The Bird Flock

Ear Infections = Bad Nights....

2011-02-15T01:07:00.001-08:00

Despite Rhett feeling off the last erm......month. We decided to go out tonight. We got free tickets to the Flash basketball game and thought it would be fun to take the kids. We had a super fun time. But at the end Rhett started complaining of his ears hurting. I thought it was just because of the loud noises and being over-stimulated.

I was wrong.

Once we got in the van and dropped daddy back off at work, Rhett started really crying. He was pulling his left ear and telling me it hurt. "weally bwad". When I got him out of the van his little ear was bright red.

Now as I lay here in the recliner holding him, I can actually hear it crackling and smell the goop coming out of it.

I feel so bad and he is so miserable. So much for a fun night.

At least we got a cute picture with Flash the Fox.....

- Posted using BlogPress from my iPhone

Fevers and Not Feelin so Hot...

2011-02-13T22:51:00.001-08:00

Rhett has been feeling really lousy. We have taken him in multiple times to the dr, and they can't find anything. He has been spiking fevers off and on for nearly a month. He doesn't eat anymore. And he sleeps tons.

We just did a holter monitor this week. Hoping this will give is some insight to what is going on. He's suffered from bradycardia since 2007, but we are not sure how badly it's affecting his body. All I know is this boy is becoming skin and bones before my eyes.....and he didn't have much to lose to begin with.

My mommy gut wonders what is going on. Because something isn't right.

- Posted using BlogPress from my iPhone

I'm Me......

2011-02-11T22:56:00.000-08:00

Sometimes I wonder if Rhett will struggle with who he is in life......you know. Lables. But tonight he surprised me.

I think this puts my worries to rest......

Holy Moly What a Week.....

2011-02-04T21:28:00.000-08:00

It's been a long time since I've had a week where I feel like I just can't handle everything. But this was one of those weeks.

Monday morning started out with a call from Andy. He had been in a car accident on the freeway. It wasn't his fault, however the girl who hit him...(at 55mph) was uninsured. He felt fine for a while afterwards, however he started hurting really bad in his neck and head after a while so he went to the Dr. They did a full work up on him, including neck X-rays. It showed that his spinal cord in his neck had reversed, so he is going to physical therapy and spinal rehab. He hurts. A lot.

To top it off our insurance are being idiots, and denying the claim we put in. We have done nothing but get the run around with them. We have been with therm for years, and all the sudden when we need something they come up with all these reasons as to why they refuse to accept our claim.

We called the girls insurance company, and they were more than happy to help, and we already have a claim number. Had I have known this on Monday, I would have skipped the 3 ring circus through our insurance. Rawr.

Rhett has not been feeling very well for the last month. He has slowly stopped eating, he sleeps way more than he used to, he gets dusky, and has had an increased need for O's. He also has had a slow heart rate. Even for him. At first I thought he was sick, however I have taken him into the Dr, and the ER. They both have ruled out any type of illness, and they are all very much in agreement that it's his heart.

Except his cardiologist. Have I ever mentioned how crazy this man makes me? One appointment he will tell me one thing, then next appointment I get told something completely different. I'm a little tired of him just doing the whole bandaid thing. Rhett doesn't seem to be the only one he has brushed off. He wanted to Trach Rhett back in 2008. Andy and I made the decision to try the UPPP surgery, and Rhett has done amazing without the trach. So I often wonder if his dr is just so over worked he just doesn't care anymore. I'm ready for a new cardiologist that's for sure.

Anyways. We are going in on Monday and going to do a 24 hr Holter test to see how low his heart rate really is. He's talked pacemaker before, and he's talking it again. I just hope they can do SOMETHING. I want my little boy back. It makes me sad watching him sleep all the time, and he missed this whole week of school because he looked and acted so awful.

To top off the week, Hunter ended up with pneumonia. He has asthma and the slightest attack sets everything in motion for him to get nasty lungs. He's spent the week at home too. He's on the mend after some hefty doses of albuterol, and cipro, as well as some loving from mom. Of course a lot of Wii time too. That always makes one happy right?

I am so glad today is Friday. I'm looking forward to a nice weekend, having decided to just put this week behind me. After typing everything out I am ready do just that.

Happy Friday Everyone!!! .........Or Saturday depending on your time zone. Heh.

Growing Up...

2010-11-26T14:11:00.000-08:00

Thanksgiving this year was fantastic!! We went down to Salina and spent the day with Andy's side of the family. We haven't been down there since before Rhett was born, and some of the family hadn't ever met him before. Just one of the many things that we had to sacrifice to make sure our sweet boy stayed healthy. Although, the last 2 years Rhett's been in the hospital either on Thanksgiving, or the couple of days before, so we were REALLY thankful he was healthy this year!! He is growing up so much, I can't even put into words how happy I am to see him becoming more independent, and growing up such a happy, sweet, and thriving little boy.

In case you were wondering just how healthy and happy he was, well I think this picture speaks not just a thousand, but a million words.......

I hope you all had just as much to be thankful for as we did.

Happy Thanksgiving Weekend!!!

It's Great Being 5!!!!

2010-11-22T21:17:00.000-08:00

During my blogging hiatus, Rhett turned 5. The big F-I-V-E.......

Can you believe it? It just kills me how quickly time has flown by. Gone is the sweet little baby who wore preemie clothes that were too big for him. Here is the sweet little boy, who has his own opinions of everything, the sweet little boy who when he doesn't want something says, "NO WAY!!"

He has lost his toddler look, and has turned into a little boy overnight.

See? I.kid.you.not!!

We recently finished up his settlement. I think I speak for both Andy and I, when I say that we are super glad to have this chapter of our lives officially closed. We were able to put the money away for him, so that when he turns 18 he will always have some type of money to use however HE wants too. We felt like as high functioning as he is, it will be really good for him. We were also able to set it up so it won't affect any SSI or Medicaid, as well as independent living assistance he may be eligible for. We were also able to get him some equipment that he needed that had been put off for so long.

He was excited to have a new car seat. Honestly I was too....his car seat was a super cheap one, and I wanted one that had passed side impact tests. Britax makes the best car seats, and I am very impressed with what they offer. Andy and I have put SO MUCH money into his health, it seemed silly that we bought him a 35 dollar car seat that wouldn't do much to protect him in the event of an accident.

We ended up choosing the Britax Marathon. It goes up to 65 lbs, and he is still just 32 lbs, so he still has a while in it. I don't think I'll ever purchase another brand again.

That being said, I think we are ready for our Thanksgiving trip to Salina. We'll be traveling about 2 hours away. I am really excited to spend it with Andy's Dad's side of the family. We haven't been down there since before Rhett was born, so this will be a great opportunity for Rhett to meet some of his cousins and Aunts!!

I hope you all have a safe and fun Thanksgiving!!

When One is Wanted, But not the Other.......

2010-11-21T21:49:00.000-08:00

I'll admit, I have taken a hiatus on my advocacy for children with Down syndrome. I needed some time to re-gather my thoughts, my feelings, my life.

However this weekend I heard about a baby boy. A little boy whom I have never met, never known, but yet have a huge unexplained love for. He was a twin born in Arkansas; a twin whose birth mother gave the ultimate sacrifice by giving him up for adoption, who tried to give him and his brother a better life, however this is only the beginning of his story.

This little boy, whom I will call Baby Doe, was born with Down syndrome. Now I'm not sure how it all played out, however I do know this; the adoptive parents decided they would only take the twin who was "perfect". The one without Down syndrome. Not only did they choose to leave Baby Doe in the hospital, they also chose to sign a DNR order. They did not relinquish their rights, they simply said the only way they would take him was if he passed away. They walked away from this child not even giving him a chance, a chance to know he is loved, a chance to fight for his life, to live and grow with his twin.

When I heard about this my heart broke into a million pieces. All I could think about was how I wanted to board a flight to Arkansas and wrap this baby in love. Take him, nurture him, let him know that he has a life worth living.

As you can imagine, news of this situation spread quickly throughout the Down syndrome community. Every one of us was outraged. Who cares if this baby is sick? If he didn't have an extra chromosome, would someone be fighting for him? Many of us made our voices heard though. We all fought hard and started questioning what had happened. Letters were written, phone calls were made, up to and including the hospital, a bio ethicist, past Governor, Mike Huckabee, and the current Governor. (Boy is HE gonna be surprised Monday morning when he has thousands of emails concerning one little baby boy in the NICU!!)

I had and still have so many questions. Who approved this adoption? Did the Doctors not explain to things to the new parents? Were they misinformed as so many parents are when it comes to an extra chromosome? I can't fathom why they would just leave this little living, breathing, baby to die.

However Baby Doe, has lots of fighters rallying for him in his corner. Even if Baby Doe has been rejected by not one, but two sets of parents in his short little life time, he is loved. We spoke loud and clear this weekend that Baby Doe will NOT be left to die. When a child with Down syndrome is born, he is loved by every other parent out there who has been blessed by an extra chromosome.

As much as my heart was breaking, it is now screaming in joy, because the DNR has been lifted. A Bio ethicist and an agency have stepped in and are looking into the situation. I know this little boy is sick, and as I wrote letters on his behalf my heart said a prayer over and over if he would just hang on long enough, we would fight, we would find him alone.

Tonight my heart soars as I hear the DNR is no longer in affect. Baby Doe might have a chance!! A chance to be snuggled, to have a rub down with lotion after a bath....to have a name. I know he still has a hard road ahead of him, he needs prayers from all of us. Not only prayers for his health, but for the chance of him finding a family fast. A prayer for the current adop0tion to be reversed, thus meaning Baby Doe will have a chance to have another family step forward to take care of him. To love him as I love Rhett, to be happy.

After going through so much with Rhett, I know what it's like to feel overwhelmed by having a sick child in the NICU, However every day I also have the reward of seeing the results of showing a child unconditional love. Every day I wake up to hugs and kisses and little raspy deep voice that tells me he needs toast and chocolate milk, My little Rhett is loved, he is thriving, He is happy, I hold him each night when he goes to bed. I just want this baby to have the life that he so much deserves,

If I were in the position to have a child, I would adopt him in a heart beat., I would put my life on hold and fly our there to be with baby Doe. Not only Baby Doe, but ANY child with Down syndrome, I don't know what's to come these next few days, however I do know that i will be following closely what is going to happen to this little Baby Doe. We have made the first step happen by having the DNR order lifted,. Now we need to find a family who will stay in Arkansas to be with this baby, I will be fighting till the end for this little child's rights, I can guarantee you that.

I've GOT to get better at this!!!

2010-11-18T20:35:00.000-08:00

Once again, it's been WAAAAYY too long since I have written a blog post. Life has just been twisting and turning so much, I can't seem to keep up with it. Plus our laptop was like going at super prehistoric mode, and it drove me nuts to even think about getting on to post.

Hunter played tackle football this year. He did amazing. He played Defensive End, improving each and every week as he played. Plus he looked SOOOO grown up in his uniform!!!

His whole team.....

Rock on....

He will be going to Football Camp in the summer, and is working on his running for next year.

We made it through Halloween, and we all had a blast.

Rhett was a Hamburger...

It's funny, we have fought so hard to get him to eat, and all the sudden he took to hamburgers like crazy. So it was kind of fitting for this stage in his life. He really got into the Trick or Treating, and ran his little heart out going from house to house. He would yell at people not to scare him, then tell him he'd give them "gestion" (indigestion)

Last weekend was my birthday. It was seriously the BEST birthday ever. Andy took me out to dinner and then surpised me at the bowling alley for a birthday party with all my friends. After that, my sister went home to watch my kids, and Andy and I went to the bar, where we all had a blast. Then Saturday we drove to Wendover and met up with Andy's sister and her sweet guy. Sunday we came home, and celebrated with the kids. It was an awesome weekend.

Andy and I are working super hard on our marriage. This time last year I thought we wouldn't make it, and today we are stronger than ever. I fel like marriage is always something you work at, sometimes it's harder than others, but if you keep working a little bit day by day you are sure to exceed. Our 13th anniversary is coming up, I hope to make it another 13 years!!

This guy is the best husband EVER!!!

I also dyed my hair. I'm no longer blonde. EEK!! I've never been dark, and I actually love the color that I am now. It's kind of a mahogany color.

My Top Gun sunglasses. Hehehe.....

I am hoping to get my camera out and take pictures in the next couple of days. Rhett has gotten so big. It's time for pictures for sure!!!

New Meds = New Kid!!!!!

2010-08-20T20:09:00.000-07:00

Any of you that have followed our blog for a while, know that we have struggled with Dakota.

Struggled with finding a happy medium for him, as well as for the family. We have tried so hard to get him into the right doctors and therapists, that are willing to help him find himself, as well as help me as a parent deal with his types of disabilities.

It's been a long hard road. He just turned 15, and we have NEVER found a perfect medication for him.

We've learned that stimulants do NOT work for him. He becomes extremely violent and anxious. We've learned that Lamictal causes him to have seizures. We've tried taking him off of medication completely. At which time he was nearly hospitalized. He has been on Risperdal for a VERY long time.

Like since he was 8.

He was on massive amounts of Risperdal. Our new therapist was so not happy with what he was on.

This therapist has listened. Really Listened to what we had to say. He has been interested in what every member of the family was experiencing in regards to Dakota's behaviors. I have explained to him how emotionally draining it is to me, knowing that I can't flip a switch and just make Dakota's life easier.

Because if I could, I would do it in a heart beat.

I've explained how heartbreaking it is to watch Dakota not be able to function with his brothers and sister. To not be able to take him to a big event, like a family reunion and just have a good time. Not getting over stimulated and ending up in a huge meltdown.

After our last session, when I explained the last few weeks, and the paranoia that he was having. The violent outbursts, the thinking that an event that happened over a year ago was happening right now, his therapist decided that the Risperdal was no longer working. (Not that it ever worked anyways.)

So we changed him to Trileptal. It's working. Like TOTALLY working. I have never seen this kid so stinking happy. He is functioning in a typical world. He is interacting with Rhett. Wanting to play with him, taking him on walks, playing games with him, loving him.

It's awesome.

I know it may not last forever. But thankfully he is mostly over his huge growth spurts. I mean the kid is 6ft tall. He can't possibly grow anymore, right?

For now, I am going to take and savor each day that is good. I don't know how long the good days will be here. Just like with Rhett, I don't know how long the healthy days will last. But I do know that these kids mean the world to me.

And I wouldn't trade them for anything.

The Heart of the Matter......

2010-08-16T22:08:00.000-07:00

Rhett had a cardiology appointment today.

It left me feeling anxious, confused, and a little angry.

His tricuspid valve is shot. His pulmonary pressures are raised again, and in the words of his cardiologist......"If he were to come down with pneumonia or an upper respiratory infection, he will have a major set back."

Well, pneumonia and Rhett are like best friends. He gets anything and it turns into pneumonia.

So I asked him what we do. As far as his pressures go. We're screwed. We can't up his meds because when they do he has major episodes of bradycardia. (Slow Heart Rate) And when I say slow, I mean slow. Like he totally sits at 45 bpm. For a typical child his age they would call a code at 55 bpm.

There is the chance of trying a different med, but right now, he wants to keep him where he's at and be a little more aggressive with the good ol O2.

Now the valve......that's tricky. They want to wait till he shows a few more symptoms. Like right now, he seems to have enough energy sitting around at home. When he starts school, it might change. His cardio didn't even discuss when to come in next. We were just told that he would probably see us in the fall or winter.

Basically what he says, is until he goes in to heart failure then we just wait. EVEN THOUGH the valve is beyond the whole severe leakage point. Over the last 4 years, I have watched it go down hill with every echo. First it was mild. Then we went to moderate. Then it was severe. Now it's shot.

I'm so not comfortable with this.

So for now we just sit and wait and see what Rhett's body decides to do.

We have had a really good summer. We've done a lot of fun stuff, but I'm ready for the kids to go back.

Dakota will be a sophomore this year, and we are going the self contained classroom route. He's not thrilled, but being mainstream in grade school vs high school is two totally different things. I'm hoping for the best, but preparing for a struggle.

Hunter will be going to Jr High. He'll be in 7th grade. He's super excited, and honestly I'm not worried about him. He makes friends like crazy, and is an easy kid to get along with. He's helped with Rhett alot this summer, and he is currently starting his first year of Tackle Football. He is loving it, and has been practicing hard for the last month. His first game is at the end of this month.

There will totally be pictures.

Chloee is going into the 3rd grade, though she acts like she's going to high school. She's way too smart for her own good. She is reading on a 8th grade level, and working hard. Her favorite books right now are Little House on the Prairie. We were in Target the other day looking for school clothes, and she found a shirt with a baby chick on it wearing glasses, that said "Nerdy Chicks Rule." She fell in love and we had to get it. She's not a nerd, but we just love her to pieces.

Rhett is still going to pre school. I am looking forward to that whole 4 hr break thing. He didn't get any summer school this year and he's been a handful. Adorable, but a handful.

Andy is starting school at UVU on the 25th. He is excited, and is going to be a teacher.

I'm currently working part time from home, and loving it. Although when school starts I will be looking for part time outside of the home. Momma needs a break!!! I had planned on going back to Hollywood Video, but they have since closed all of their stores and gone out of business.

I hope all of our little friends are all doing well. If you have a minute, and could visit sweet Ashley Kate, she needs our prayers. She is a beautiful little girl that has been fighting rejection and recently had to explant her intestines. She is the example of strength if I have ever seen one!

I Think I Raised a Rabbit.......

2010-06-27T22:18:00.001-07:00

Rhett's never been real interested in foods. I mean, he loved pedia sure for the longest time.

Now he takes Elecare through his G-tube and it's kinda smells like sweaty socks. I know. Ewwww!!!

He is so cute though. Lately his thing is salads, He LOVES lettuce. He will eat any food of the rabbit variety.

Add a lil dippy sauce, (ranch), and some cheese and crumble up some crackers and he is in pure bliss. He doesn't like meat, and he'll eat bread...and he LOVES spaghetti, but that's pretty much his diet. Gotta love walking into a restaurant and he squeals with delight when they bring out a salad.

He's not so in to junk foods. I he likes a Popsicle every now and again, but for the most part all those foods that should help him GAIN weight, he wants nothing to do with. But it's ok. Momma has tricks up her sleeve to help him gain those pounds that he needs.

He's still so little. I'm lovin it. I love those little cuddly days and I love that he still fits in my lap!!

I see so many days where he is so grown up and doing big kid things, but yet he still has that cuddly little baby part of him. I contribute it to the fact that so much of his little life has been in the hospital and it's what we lived with. The cuddling is all he's known. It makes me so very happy to snuggle.

I often wonder why I was picked to be the mom to such an amazing little boy. His strength is 10x that of which I have ever known. I am so lucky.

Today we drove up the canyon and it was so fun to watch him shake hands and talk to everyone that walked by him. He touches so many people.

If half of the people in the world knew his love there would be a lot less hatred in the world. Many can be so down right mean and nasty. They hide behind the Internet and attempt to make others miserable because the don't love themselves and their lives. It's sad.

As for me...I'm just going to sit back, relax, and enjoy my kids this summer. Gimped up or not......we have plans!!! I am so lucky to make memories with my family!!

And if Rhett grows really long ears and buck teeth.....we all know why!!!!

Up and Down and All Around

2010-06-26T01:42:00.001-07:00

It's nearly 3 am and I sit here thinking of the last 4 1/2 years. Contemplating how my life has changed. I have always hid behind a strong front, and I'm sick of being strong. I'm sick of putting on the brave face and putting on my big girl panties to face the day. I just want to lay down and let the world over run me right now.

I know. I'm depressed.

I hate living with my mom. I really do.

No. Like seriously can't stand it.

Like the whole....I.want.to.pull.my.hair.out.and.scream....type of hate.

I know I really don't have a choice in the matter right now. I mean I AM working at it. I have goals and a plan set in motion....but it's not coming soon enough. Lord knows I am not a patient woman when it comes to what I want.

If I want something....I want it now.

I feel like I have lost all control of my life. I have zero privacy. I have to tell my mom where I am coming and going at all times. She pries into my mail, she screams at my kids, and she complains about everything.

You know, kinda like I'm doing right now.........

I usually have my softball to work frustrations out on. However I'm done for the season now.

Seriously.

Memo to me: Old people can't dive into 3rd base like they used to.

Heh.

Screwed up my knee. Tore my meniscus, and who knows what else. I need to have an MRI done and all that fun stuff.

So I'm pretty much laid up at the moment.

Gotsta love getting older.

The kids are all doing well though. Including Trouble Maker Magoo.

Rhett didn't qualify for summer school this year. It's kinda sad. He loves school so much. This also means that he's not getting any type of therapy. Kinda makes me wonder if he really needs it though. He is still walking like a drunk, but that's always been him. Alot of that has to do with his tethered cord, and the damage that it caused before we caught it and it was repaired.

So will PT really help that?? I dunno.

As far as speech goes, he doesn't really qualify for it. The kid talks like a teenage girl on steroids. he yaks our heads off all day long.

In complete sentences......and randomly blurts out MOO COW!!! I think he has a tick with that one. Heeeheeeheee.

Fine motor, I know we could use help in though. He can properly use scissors....which is really scary I might add......and can draw shapes. But his hand eye coordination isn't all that grand. Of course we don't have insurance so we can't go private.

What can ya do.

We are starting a series of Dr. appointments while he is out on summer vacation, so I'm pretty sure we'll have some upcoming surgeries. He needs to have tubes put back in. They fell out and he's had ear infection after ear infection.

We see ENT on Tuesday.

Then in July we go to the Down syndrome clinic, and we are going to discuss potty training. Which he is struggling with. Not that he can't tell us when he needs to go, he is mentally ready but he can't control his bladder. He coughs, sneezes, or laughs and he pees. Might end up seeing a urinologist on that one. It could be a number of things, from as simple as just low muscle tone, to his bladder being damaged from his tethered cord.

In August we see the cardiologist. This is the appointment that keeps me up at nights. I really don't like cardiology appointments. They turn me gray. I know one day they are going to say, yep. Time to replace that valve. I just don't even want to think of it. I hate surgery.

Rhett's favorite book right now is NO DAVID. And of course his favorite page is the one where David runs down the street naked. He just giggles and laughs and falls over when he reads it. It's a pretty simple book, but to give Rhett credit, he has the whole book memorized.

Dakota is going to be in a self contained classroom in High School this upcoming year. It's something I have kind of been pushing for. Full inclusion in grade school VS full inclusion in high school is a totally different story. I know he's upset with us for doing it, but he has struggled SO MUCH in Jr. High, and I feel like he will do so much better in this type of a setting.

He is getting so big. He's 6ft tall, and 180 lbs. His voice is deep now, and he has facial hair. I'm not sure when all of this happened, but I'm pretty sure it was overnight.

Hunter and Chloee are doing well. Hunter is such a big helper. Him and Rhett still have that special bond that is unlike anything I have ever seen before. He is enjoying scouts, and hanging out with his friends this summer. I have kinda let him have run of the town on his bike, and he seems to enjoy that.

Chloee......hmmmm I might have created a monster. She can be a brat. But she is such a good kid. She blew out of second grade like a hurricane. Her reading and reading comprehension skills were crazy. She is functioning on a 5th grade level. She is 8 yrs old and reading things like Little House on the Prairie and Fablehaven. Every Time I go in to check on her when she disappears for a while she has her nose in a book. It's so cute.

She's gotten to be our "informant". I am working really hard on teaching her the difference between something important to come and tell me....(like the boys bloodying each other's noses) and things that don't need to be worried about.......(MOMMMMMMM!!! Dakota farted on hunter!!) Yeah. We have alot to work on.

But she always does what she's told, and she very seldom complains about anything......unless it's her brothers.

Hmmmm normal girl.

We've had a pretty good summer so far.

I took the kids hiking........

To the lake......

We've played in the pool at the house.....

And we even went camping......

To which I might add, that it totally rained that night and **MOM** was the only one that got completely soaked in the tent.

Ahhhh good times good times.

Hope to make lots more summer memories......if only this damned knee will heal.....

I keep saying i'm going to be a better blogger.....

2010-03-18T12:18:00.000-07:00

Sometimes life doesn't always go as planned. I think I have more than learned that lesson......and then some. I have ended up moving in with my mom. My credit sucks and it seems that everyone does credit checks before renting these days. It's been interesting......shoving 8 people into a little tiny 3 bedroom house. My bedroom ended up being in the dining room. I have zero privacy. Rhett has no bed except a little foam couch that folds out on the floor. So he generally sleeps with me.

Rhett has been sick again. He has RSV and human metapneumo virus. Which is what he had last month as well. While at the er last night I was able to talk them in to sending us home with the deep suctioning tubing. As long as he stays suctioned his sats stay up enough to stay home. We head back to the Dr tomorrow for a check up to make sure he is still doing well enough to be home. I am so very thankful that God has given me the strength to take care of him at home so that he is not in the hospital where he can catch something else on top of this. Which with his pulmonary hypertension and his chronic lung disease could be tragic for him.

We finally settled with the hospital from when he was overdosed. It's been a long hard road. We didn't get near as much as what we planned. However in the end all that matters is that my child is still here. He is walking and talking and makes me smile every day. He is my little hero wrapped up in one little short 32 lb package.

The other kids are all doing well. They finally have a big yard to play in and fields and swamp to explore in. It's fun to see them doing the same things that I did as a kid in the same place I grew up. I am waiting for the day that they come in and tell me they found a dead muskrat to poke with a stick. Or the day that they go put pennies on the train tracks. I am excited for summer.

I hope all of my bloggy friends are doing well!!!

Tap...Tap....Tap.....Does This Thing Work????

2010-02-14T18:16:00.000-08:00

Wow. I have been a no good horrible very bad blogger!!!!

Things have been really super duper stressfull on my end of the world. Somedays I wonder if I am strong enough to go on, only to find that I pick myself up and somehow make it through the day, or hour or even minute for that matter.

My computer blew up with a virus thus I was left without any way to get online other than my phone. However I just treated myself to a new laptop as I will be beginging school shortly and needed one.

Rhett has done really well this winter up until recently. He was admitted the week of Christmas briefly due to Rotovirus. Then about 3 weeks he started in with a cold. It settled in his sinuses. They put him on an antibiotic and the same cold cycled through the whole family, and then he re-caught it. However this time it ended up with a really tight cough, wheezing, and super low oxygen saturation levels.

On Friday we reached the maximum oxygen for our concentrator at home and he was still only in the 80's, so we brought him to the ER here at Primary's, where we have been ever since.

He was admitted that night and I am glad he was. He has been between 3 and 4 liters pretty much the whole time we have been here. He was diagnosed with Human Metapneumovirus. Which is basically the sister virus to RSV....however with this virus it is actually worse. With RSV they know it peaks around day 5. But this virus varies greatly with each child. And children with lung damage or Pulmonary Hypertension such as Rhett tend to struggle with it. And struggle he has.

He is miserable. He has the whole pale look with the black eyes. Yet with all of his steriods and albuterol he is bouncing off the walls at times. He has slowed down on his eating and drinking, but since he has the g-tube we have avoided the whole IV mess. Which is a good thing since he is such a hard poke!!!

As always, Rhett is winning the hearts of everyone around here. Everyone knows him and has to say hi. Even if it's from afar since he has cooties. We are in the surgical unit of all things. They don't want him catching something else on top of this virus as it will push him over the edge. This is something we really don't want. His lungs just won't tolerate it.

Everyone is being super careful and we want out as soon as possible.

The other little birds are doing well. They are hanging out with my sister and having a grand time. Chloee and Hunter are loving school. Dakota is struggling. He was actually suspended 2 weeks ago, and they are talking to moving him from his all inclusive school to a school for children with disabilites. I'm not sure how I feel about this, other than I do know that if he goes to the regular high school next year, they will freaking eat him alive. He is in the 9th grade right now and he just can't handle it.

I am trying to stay as sane as possible and not go gray. I guess they make hair color for that problem though. Hehehe!!

I hope all of our bloggy friends are doing well. I look forward to catching up with all of you!!

Loves and Hugs!!!!

Long Overdue Update..........

2009-11-27T20:28:00.000-08:00

Wow i seriously think I may have broken a Pam's World Record for time periods between blog posts.

Sorry about that. My bad.

See things have been going in a downhill spiral and yeah. I'm not picking myself up anytime soon.

Hmmmmm where to begin.

Let's start with my gallbladder. I have been having issues with it for a while now. They did some testing and during the testing found a mass on my liver. The first initial ultrasound though showed nothing abnormal, but I was still having issues so they did a different test that showed how well my gallbladder was actually functioning.

And the results were........It wasn't.

So at this point, they had already decided that the mass needed to be removed and they were going in, so why not take the gallbladder as well.

Things happened pretty quickly from the day I went and met with the surgeon to surgery day. It wasn't even 24 hrs. Of course they were worried that the mass was malignant, aka as the "C" word.

So on Tuesday the 10th, I gowned up and went under the knife. Hehehe. It was all done laparoscopically, so it's not like they sliced me open, just made a bunch of tiny stab marks all over my belly.

Cause it's funner that way don'tchya know.

A couple of hours later, and a few drinks on my part....of apple juice that is. I got up ran.........okay slowly hobbled........around the nurses station and got my walking papers.

Recovery has been another story.

Ick.

I ended up with an infection, thrush, and some serious pain.

We did get results that the small mass was just benign, but either way I am glad that pesky little thing is out of my body. Along with my gallbladder.

Granted my diet still doesn't consist of many solid foods. I have a really hard time tolerating them. But I can tolerate Applesauce and Jello and Eggs. Other than that it's Icee's all the way baby.

To top it all off, Andy and I have been separated, although he did move back in for this surgery to help take care of the kids. There is no way I could have done it on my own, especially with the complications that I had.

Rhett has been doing well. He is loving school. He is loving riding on the bus, and I am loving that his teacher is a germ freak.......

He talks to no end. His speech therapists love it, and so do all of his aides. Their comments when we did his IEP was that they had never met anyone quite like Rhett as far as his speech skills go. Which is a good thing.

He is doing well in his other areas, of course he has certain ones that he is lacking in, like his gross motor, but he is doing really well. I am so proud of him. This year he has shown us that his lungs are starting to recover from his incident back in 2007.

He is not really into the whole potty training thing yet. We almost had him there a few months back and it went kaput.

Chloee has just lost another tooth and looks so cute with her toothless grin. She is loving school and her teacher has had to find books from upper grade levels for her take home reading to keep her challenged.

Hunter is doing well all things considered. He has really struggled with our separation more than anyone. Him and Andy have always been very close, and they still are, it's just affected him more so than the other kids.

Andy has been great at stepping up and taking care of them. I am very proud of him.

Dakota is doing really well in school. I think letting him go to this school in another town was one of the very best decisions I could have ever made.

I have pictures to post. Just don't have the time to upload them right now.

I hope all of my bloggy friends are doing well, and that you all had a wonderful Thanksgiving!!!!!!

Happy Birthday Rhett!!!!

2009-10-07T22:00:00.001-07:00

Today my little boy turned 4.

I can't believe it. 4 years ago he was this little tiny 4lb package wrapped up in tubes and wires, and looked like a chicken. Now he still looks like a chicken, minus the wires.....

Oh how happy this little boy has made me. What an amazing child he is and he truly has so much to offer.

Thank you Rhett. Thank you for making me the person I am today, and thank you for choosing for me to be your mommy. I Love You Forever.

I CAN!!!

2009-10-02T21:27:00.000-07:00

Don't look at me and think of the things I can't do, because for every 1 thing that I'm not doing yet, there are 10 other things that I have already mastered.

I can eat a slice of pizza all on my own.

I can roll down a grassy hill just like my peers.

I can tell you I love you not only with my words but with my eyes as well.

I can play trucks and cars and line them up in the living room only to crash them.

I can put in a DVD all on my own...even when mommy tells me not to.

I can climb to the tippy top of the biggest slide and go down it with a huge smile on my face.

I can climb the steps of the bus all by myself each morning and wave goodbye to mommy as I head off into the world.

I can tell you that my favorite food is Spaghetti if you ask me.

I can tell when someone is hurting, and I do whatever I can to make that person better.

But most of all I can smile, and it's my smile that makes the whole world know how amazing I really am.

31 For 21....

2009-10-01T11:07:00.000-07:00

Guess what month it is?

OCTOBER!!

Why am I so excited about October?

Because it's Down syndrome awareness Month!!

Well, that, and Rhett is going to be 4 in 6 days too....wahoo!!! We're really shooting for NOT being in the hospital this year on his birthday. :D

So I will be posting every day this month about our little guy, 31 days for Trisomy 21.

Today I would like you to help out though. Please leave a comment telling me either one fact about Down syndrome, or one way that Rhett has changed your life.....and remember to hug someone you love with Down syndrome!!!

At What Point do you Wonder if the Dr's are Doing Enough For Your Child?

2009-09-20T08:54:00.000-07:00

Many of you who know me, know that we have issues with the hospital in our state. Many of you know why, and for those of you that don't, I can't really talk about it.

That being said....I am beginning to wonder if they have just given up on Rhett.

Yes. I get it, they are afraid to touch him, and we make sure that everytime we step foot in that hospital, it is crystal clear that anyone who touches him better be on their toes and not screwing things up. Maybe that's a bad thing in certain ways. But in the same breath it's a good thing as well. I won't just stand by and think that they know what's best for him anymore. I won't put my faith in someone who has no idea what this child means to me. But when you get to a point where it seems like they are letting him fall through the cracks, it makes me angry.

We've struggled with gaining weight over the last 9 months. Okay, I'll be honest...he's loosing it. Last year at this time, just before his 3rd birthday he was 37 lbs. This year he is 27 lbs....dripping wet with his clothes on.

His general health is fine. He eats well, and he gets bolus feeds of Elecare throughout the day in his feeding tube.

But his heart is wearing him out. His tricuspid valve is leaking pretty good and he's burning lot's of energy.

The above picture says it all. You can tell that just over the last month there has been a rapid decrease in how he is feeling. He's tired, you can see it in his eyes, see it in his step, as well as his sleeping habits.

I don't think it's fair that the Dr's keep wanting to put off his valve replacement until he's older. I feel like they aren't looking at the whole picture. They are just looking at the fact that the older he is the less surgeries he'll need since that valve won't grow with him.

Don't get me wrong. I totally understand that. I agree with it to a point. But the thing is, is that I don't understand why they have to let him get so sick before doing the replacement. I don't want another surgery. I don't want to ever step foot in that ICU again, knowing that just around the corner my perfect little boy is lying in a hospital bed on life support, while the rest of the world goes on with their lives.

However I don't enjoy just sitting here watching him waste away while his health declines, and the Dr's just sit on the sidelines going hmmmmmm.....

I find myself lately lying in bed with him. Running my fingers across all of the scars on his battleground of a chest. He has had to fight so hard for everything that he has accomplished. I don't think anything has ever come easy for him.....I'm not sure if anything will come easy for him. But I know that whatever he does, I will be there to fight right along with him.

I'll always pick him up when he falls, I'll never leave his bedside when he's sick or had a surgery. I'll always fight for him tooth and nail. I'll never stop.

I'm not afraid to hurt anyone's feelings....if I have to take him to a different state so that he can get the care he deserves I will.

He is my child. My life. It's why I'm here.

The Post In Which I Can't Think Of A Witty Title......

2009-09-03T20:56:00.000-07:00

So I'm sure since I am like the queen of blogging....(bwhahahaha)....oh come on, I know you're laughing.....You all have missed what I have to say.

Ahem.

Truth be told I haven't had really good news to report, so I have just been keeping my mouth...(and hands for that matter)....silent.

Ya sure I've been around on Facebook, and Twitter, but I don't know what to do with my blog. I have felt like a big fat whiney baby so therefore didn't want to keep posting oh woe is me posts. But then again I didn't want to lie to myself, that everything is all hunky dory either.

Make sense? I hope so because it sure doesn't to me.

Our biggest thing right now is that Andy and I are not working, nor can we find a job. I am working on getting my GED, and should have that in the next few weeks, (Yes I am a high school drop out....let the trolls be released.....) then I will be off to school for 12 months to become a medical assistant. However I need to find a part time job to work as well, since I will only be going to school for 15 hrs a week.

Andy is currently not working. The car industry, well we held on as long as we could, what else can I say about that?

Stupid freaking economy.

He is currently working on heading back to school as well. He can't go back to production or manufacturing which is what he has done his whole life, nor can he sit for 10-12 hrs at a call center due to his back. He still is going to need pins and rods, and have it fused together in the future, so we are trying to hold out as long as we can on that.

Anywho.....long story short, he has met with the folks at Vocational Rehab and will head to UVU in January to become a teacher. Yes, I know that teachers don't get paid a bunch, but it's not about the money anymore. We don't need alot to survive. Just our measly rent, utilities, and car insurance. Plus gas and food and other items. But that's it. That's all we have. It's all we need. Keeping it simple is much better than all of the silly big extravagant things.

Boy did we learn that the hard way.

I would be content just living in our little three bedroom apartment for the rest of our lives. It's not about moving up with monetary items/material things anymore. It's about growing together and moving up individually and as a family, spiritually and mentally. It's about being together and going for little weekend drives up the canyon. Playing softball on a warm summer evening. That type of stuff.

Things have just plain sucked, there are really no other words for it.

We are waiting for next year when we can claim medical bankruptcy again. I am hoping that we can dig ourselves out of the holes we are in. The medical bills just keep coming in, and I just keep resisting the urge to shred them up for Rat bedding.

I am bound and determined not to let the Utah headlines get me down, the ones that say that people are out numbering the amount of available jobs by 10 to 1 right now. I know that the economy sucks, but I will find a job. Andy will find a job. We just have to, it's all there is to it.

Preferably steady jobs, but ones that are close to home. It can't be so far away that it's not worth it because we pay so much in gas. It doesn't have to pay much. Just something to keep us afloat.

The calender that Andy has been working on is nearly finished. We will be selling them here on the blog in the next month or so. He as well as some of his very talented friends, have done some amazing pictures of your children. Hopefully this calender will help some with our money situation.
You can see some of the pictures here, including the most recent one which is of Rhett himself. Our goal is to sell 5,000 calenders. Which, a portion of that money will go not only go to help with Rhett's medical bills but also towards helping some of our special friends who are in need.

All of the children in this calender share one thing in common, an extra chromosome.

So ya. Alot of rambling, a not to informative update, and I think I am done with this post. I have lots more to talk about, but I am so extremely tired. The kids are tucked in bed, and Andy is waiting for me on the couch to cuddle and watch a movie with him.

I will leave you with some pictures of our latest but CHEAP family adventure.......

Ice Blocking!!!

I hope you all have a fabulous weekend. The Bird Family sends all of our love to our sick friends, and those in need.

Night Y'all.

Lowering My Expectations.....

2009-08-20T16:03:00.000-07:00

Over the last few weeks I have come to realize something.

I need to lower my expectations. I keep thinking that all of the sudden we are going to get a huge break out of the middle of nowhere.

Now. Mind you I don't want this so called break to be just handed to us, I know we have to work for it.

However.

I have expected something big to just happen to make our lives easier. After all, it was just one big thing that made our lives hard to begin with.

You know, that thing that happened back in 2007.

Our lives aren't going to magically be put back together overnight. It's just not going to happen.

Andy lost his job again, I am still not working, and it's not for lack of trying on either of our parts.

Andy can't do the things he used to do. He can't lift 50 lbs repeatedly, nor 20 lbs for that matter. His back is shot. So he has met with the folks at Vocational Rehab, and plans on going back to school. Since he has a disability now, his schooling will be funded 100%.

What does he want to be?

A teacher.

I am so proud of him. I think he would make an amazing teacher, but no matter what he decides on, he will succeed. I have no doubt about that.

I am also headed back to school as well. I am going back to be a medical assistant, it's only 15 hrs a week, for 10-12 months, and I hope to find a small part time job between that as well.

We don't need much to survive.

As I have stated before, all we have is rent, utilities, food, and gas to get back and forth to job interviews. The medical bills can wait. They have waited this long already. It's not going to hurt them to sit some more.

So when I say I am lowering my expectations, I mean that we are going to start out small, and work ourselves into something bigger.

Slowly.

Between now and then, Andy and I are loving being together. We have refocused our lives around each other rather than finances, and we are doing fun things as a family again. Playing cards, family movie night, the important things.

As for our next adventure tomorrow night?

Ice Blocking.

There will be pictures. I promise.

An AwEsOmE NiGhT!!!!!

2009-08-14T20:14:00.000-07:00

This week is the Utah County fair, and last night Andy and I took the kids. Oh my gosh it was so much fun.

I love this picture but the wind was so bad, and my poor hair was all over...oh well at least Andy looks good.

Okay, so one of our friends that plays on our coed softball team was showing her steers, and these cows were seriously like dogs they were so tame. We had so much fun messing around with them, and laughed so hard at how funny these stinking cows were.

Hey baby...wanna lick?

This cow was so awesome he kept licking me, and his tongue felt so cool. In this picture though, I think he was actually eating my shorts. Hims thought they were yummy.

This was when he first started licking me. Andy and I were both laughing so hard. Andy could hardly hold the camera steady.

Andy's Girlfriend, well, at least SHE thinks so. She says, Andy? What's up with the short one word texts? Are you trying to tell me something? Am I supposed to get the hint? ROFLMAO!!!! This sheep REALLY liked Andy. But alas the feelings weren't mutual.

Me and my bubby bear......

He is WaY too much like his father......

Daddy and Rhett playing with the cow....Daddy had to put his hand out so the cow wouldn't lick Rhett, Cow's tongues really hurt if they lick ya too long.

Um, remember the picture of Hunter? Ya, like I said. Like father like son....

Sorry, no witty caption for this one....It's alot easier to caption other people.....

There has been some serious lovin goin on here the last few days. I love that we always end up on our feet and come out on top.

Ya. My husband, the butt kisser......He said it was much better than other things that have tried kissing him in the past......Sorry, inside joke.......

Andy was on the computer last night playing Mafia wars, and I was laying on the bed cuddling with Chloee and Rhett. He looked back and grinned at me, and said, "You are so beautiful." Then went and got the camera.

Sigh. I LoVe our kids, and I must say that they are amazing and so well behaved. It's not hard to raise amazing kids. All you have to do is love them and not be so vain that all you think about is yourself instead of focusing on helping your children be the very best they can be.

We have an AmAzInG family, and I must say that even through our trials, Andy and I always seem to make it through them, and just end up loving each other more than we ever thought possible.

As off as it may sound, I am thankful for our trials. They just make us that much stronger.

Yum....

2009-08-12T18:05:00.000-07:00

Apparently when a certian 3 year old eats a penny, or in Rhett's case pennies, they come out the other end blue.

Who knew?

Wonder what else he's got in store for me?

Little turd.

Ahem....no pun intended.

I Am Sick.....

2009-08-10T21:03:00.000-07:00

Today has been a really sucky day.

I am sick of hurting.

I am sick of wondering what's going on, and feeling like I am left in the dark.

I am sick of doing things for others then feeling like a doormat afterwards.

I am sick of trying so hard for it all to be in vain.

I am sick of trying to make things right and it only being one sided.

I am sick of being stuck at home all the time and not being able to pick up and leave when I need to.

I am sick of not having friends to talk to in real life.

I am sick of my heart being an open door mat.

I am sick of the unknown.

I am sick of not knowing who or what to believe.

But most of all I am sick of hurting.

It sucks. It sucks really, really, bad.

Please Mommy????

2009-08-04T21:53:00.000-07:00

Rhett got told he couldn't throw rocks in Grandma Bird's pond anymore. So he took it upon himself to sit on the deck and pout.

Now do you all know why I have such a hard time telling him no?

I mean I do discipline him, don't get me wrong. Lord knows where I'd be if I let him walk all over me. I've been witness to that.....okay, I'm not even going there.

But still. Those baby blues, and that pouty face are enough to make my heart warm and fuzzy before he gets told "NO". I've developed a pretty darn good poker face over the last 3 years.

Chloee had surgery today. She had her tonsils and adenoids out. As well as a small growth removed from the back of her throat on the left side. We are waiting on pathology reports for that. So as soon as there's news I'll post.

I have pictures of my brave girl, but it turns out I am too tired to download and edit them tonight.

Rhett's little life as he knows it has been turned upside down with Chloee getting the attention for a while. So on top of taking care of all of Rhett's daily normal stuff that is enough to run any 1 human being into the ground, I am now taking care of Chloee and her recovery, as well as a husband who is sick as a dog, and on the verge of a heart attack.

He had his triglycerides checked, and he was at 658. Normal is around 100. So he is now on Cholesterol medication, and once those come down in 4-6 months, then they should be able to check his other Cholesterol levels that they couldn't get numbers for because his triglycerides were so high. Depending on that they will see if he needs to add another medication to his mix.

I'm tired. I'm worn out, and I am physically and emotionally exhausted.

So please don't ask me how I'm doing. You'll end up with a hysterical crazy lady on your hands.

For now? My bed is calling.

BoY's WiLl Be BoY'S

2009-08-03T20:31:00.000-07:00

You know, I often think of Andy and his brother Anthany, (Toad) as lost boys. They have a super close bond, and they still get together and wrestle and pick on each other like crazy.

Uncle Toad is a favorite around here. My kids adore him.

These "BIG" boy's won't ever grow up, and I love that.....

This one cracks me up, it was a great big giant dog pile. Rhett was standing behind me. He wasn't so sure about his Daddy getting "picked on."

So tell me? Is your husband just one great big giant ball of a little boy trapped in a grown mans body?

For me, I wOuLdN't HaVe It AnY oThEr WaY.

PiCtUrE OvErLoAd!!!!!

2009-08-01T16:14:00.001-07:00

While I have been MIA trying to pick up the pieces of our lives and move forward, we have been working really hard on focusing on being together. Here are some of the FuN things we have done the last few weeks.

We've done ToNs of swimming. (Special thanks to Ashely for taking the swimming pictures of us!!)

Then we went to a beautiful place up in the mountains called Cascade Springs. It's always been one of my very favorite places in the whole world. Even as a child. So I decided I needed to take my kids up there.

Rhett did an amazing job walking around all the trails and not trying to dive in the water.....er....too much.

Chloee had a hard time staying out of it too though.....

Sigh....I really could just eat him.

We even got a rare picture of me with the kids!!

Rhett's new favorite thing to do is wrap his arm around your neck for a pose, and say ChEEsE!!!!

Koda even cooperated with me and let me take some pictures of him!!!

Chloee is always ready to pose for the camera. She wishes I had one attached to me all the time.

Hunter helped Rhett get a drink from the drinking fountain. I nearly wet my pants I was laughing so hard at the both of them.

Hunter and Rhett really are best friends.

Don't let me fall okay Hunter?

Later that weekend we had the Bird Family reunion.

Which included some AwEsOmE Karaoke....

This is Andy and his cousin Tim. Tim is the one who has taught Andy how to draw and helped him so much with his art. They sang Whiskey for my Men, and Beer for my Horses.....Again, I almost wet my pants.

Hunter got into some serious Arm Wrestling matches with our other cousin, Craig.

They had a bounce house/obstacle course that the kids got to play on. They all had oodles and oodles of fun!!

We had alot of fun, and it was so great to be together as a family.

Even if Rhett did end up with RSV this week. Ya.RSV.In.August.

The doctor told us this was the 4th case he had seen, which makes me really worry for what is in store for this winter. Not just for us, but for everyone.

We are working hard on keeping things together and looking on the bright side of things. Praying for a steady paycheck and a job that allows us to be together.

That's the most important thing in life. BeInG tOgEtHeR.

Questions Answered, Time, and Starting Over....

2009-07-30T21:23:00.000-07:00

I think I am ready to get back into blogging.

I think.

I have had many emails and questions asking me what is going on, and to the best of my abilities I have tried to answer them. However some may have been over looked, because for a while I didn't want to talk to anyone.

I have been on FaceBook and Twitter, and keeping up with close friends, but other than that I just needed time to gather myself, rediscover who I am, and who I want to be.

Raising children with special needs is hard. Although I consider Dakota and Rhett in every way to be an amazing part of our family, it has taken it's toll on us. Especially Andy and I. Since Rhett's incident in 2007 Andy and I have struggled. Really bad. Me, trying to focus all of my time and energy on getting Rhett better so that he can live the very best life possible, and Andy spending all of his time and energy on keeping food on the table and a roof over our heads.

Well Rhett has gotten better. He is doing great. He is in school, he loves to play on his own, and with his siblings, but all of the sudden I didn't know what to do anymore. So I went into a depression.

A depression that took a huge toll on my family and those who love me.

Long story short, Andy and I have not been focusing on us. We have just followed the motions in life and forgotten who each other are, why we are married, and what our goals for the future are. You can't make a marriage work if you are just in it for the kids. A marriage is a partnership and you need to focus on each other so that you CAN be there for the kids.

Does that even make sense?

I don't mean to sound selfish, but I believe it says in the Bible somewhere, that God comes first, then your marriage then the children. I now have seen first hand why that is. Because Andy and I lost focus on each other, we nearly lost each other. A couple of weeks ago our marriage was all but over.

However we have decided that we do love each other and we really want to make this work.

Are things perfect?

No.

Will it take time?

You betchya.

Things don't just change and hearts don't heal overnight.

One thing I do know is this. Andy has been there for me for the last 12 years. He has helped mold me into the person I am. Before I met him I was in an abusive relationship and had no self esteem. He made me strong, and showed me that I am worth something.

He has been an amazing father to our 4 children, and stepped up to take care of Dakota when he wouldn't have had a father otherwise.

The best part of my day is waking up next to Andy each morning and cuddling up next to him at night. Knowing that when he has a nightmare just the touch of my hand will calm him down so he can sleep again.

I love it that even when he is upset with me come bedtime, even if he doesn't want to cuddle, by the time he is asleep his feet have wandered over and wrapped themselves around mine.

I love watching the kids get excited for him to come in the door each night as they jump into his arms yelling "Daddy!"

I love that as soon as those hugs and kisses are done he comes up to me, puts his arms around me and kisses me.

I love the smell of him after he gets out of the shower and is all squeaky clean. Wherever he walks in the apartment he leaves that scent behind.

I love the way he makes people laugh. His laugh is contagious. There have been so many times in the past that we have gone to the movie and he has laughed so hard and loud that even after the funny part is over, people are still cracking up....either that or waiting for us out in the parking lot to beat him up.....(Of course they take one look at him and decide against it.) :D

Finally, I love that he has sacrificed so much for us. It would be so easy to just get up and walk away and I know many men wouldn't be able to handle the stress of it all. But he has been there. He has protected his children, and always listened to me when I need him.

So yeah. Things may not be 100% okay in our lives right now. But they will be.

Love like this just doesn't go away.

The Rest Of The Photos From Yesterday's Shoot.

2009-07-22T19:31:00.000-07:00

Be honest....would you hire me to take you family picutres?

This Could Seriously Be My Most Favorite Photo Evah..

2009-07-21T21:25:00.000-07:00

And yes....I did it on my own!!

Life and Such....

2009-07-18T10:27:00.000-07:00

I'm not sure what direction my life is going in at the moment, and I need to take a break. I know I have taken breaks in the past, but things have never been so complicated before.

There are alot of things I need to be focusing on, and my heart has alot of healing after a really rough week. I need to work on some things to make my life better and to find who I am. I have alot of time with my thoughts, and I'm not sure if it's a good thing or a bad thing. Some days are better than others, and today is a not so good day.

I'm not sure why, other than by the events over the last week, but my life has completely changed. In many ways for the better, but I still hurt, and I still need to heal....I hope that I can heal.

The road in life is long and winding and always changing. There are always bumps, and in my case mountians that seem to need to be overcome.

Right now my heart isn't into blogging. In fact, I don't know where my heart is. Really. I don't.

I know that I am the only person on this earth who can make myself happy, so I need to work on me I guess.

If anyone needs me for anything, my email is mom2rhett@hotmail.com please don't be upset if I don't get right back to you. I have been overwhelmed with Emails the last little bit.

Loves,

Musical Beds....

2009-07-10T12:29:00.000-07:00

Last night was just, well....weird.

It started out all fine and dandy. Hunter and Chloee decided they wanted to sleep in the living room. They got out all of their blankets, and made beds. Chloee got her stuffed animals that she has to sleep with every night and they were all set.

Rhett and I sat in the recliner and watched Malcolm in the Middle while he went to sleep. When he was finally out, I put him in his bed, which is on the bottom bunk in the room that him and Chloee share.

Andy and I talked for a bit and then we were out as well.

Oh and I was out-out. I mean I haven't been so dead to the world in a looooonnnnnggggg time. I went to sleep and the next thing I know it's 5:30 am. I'm not sure what the sound was that woke me up, but after lying there for a minute I could hear Rhett fussing and calling for me.

I was still so flippin tired I couldn't walk straight.

You know how it is, you get out of bed, stumble around, walk like a drunk, and run into a few walls, maybe even stub your toe on the toy truck thats in the hallway and say a few choice words.

Anyways. So I walk/stumble into the bedroom over to Rhett's bed, mind you it's still dark, and go to pick up Rhett. As I am picking him up, I am thinking, "How the H-E-double-hockey-sticks did he get so dang heavy?" Then I stand there and the world spins around a few times, and I realize.......This isn't Rhett!

Though I'll be honest the thing that finally made me realize I had the wrong kid was that I knew Rhett didn't have that much hair.....

For some reason Chloee was sleeping in Rhett's bed.

Now I am wondering where Rhett is. I stumble back out into the hall, because I am still half asleep, and turn on the light. After hitting a few walls, and running into the doorknob, I walk back in the room to look for Rhett. I couldn't see him anywhere, and was getting a little worried. Then I saw a blanket off the side of the bed move, and a foot stick out.

Rhett was nearly completely under the bed with his little toes hanging out just enough for me to realize it was him.

I pulled him out, and brought him into bed with me.

We both slept really well for the next 2 1/2 hrs, and then my alarm went off. I got up to get Hunter up so he could go with Andy when he left for work. (Hunter is staying with Andy's mom this weekend.) I walk into the living room, which is where I left the kid last night, and he's not there.

Seriously?!?! Did I miss some type of game of musical beds or something?

I walked into his bedroom and sure enough he's up on his bed fast asleep. I told him it was time to wake up and get ready to go. He looks at me and says, "How did I get up here?"

Pfthhh, your guess is as good as mine kid.

I wandered back into bed and laid back down thinking that I could possibly have the strangest kids on the face of the earth. Then I slowly reached over and flicked Andy on the head.

You know. Just to make sure he was still there.

I Think the Universe Hates Me....

2009-07-08T10:06:00.000-07:00

Yesterday was nuts, literally, (and you'll know why in a minute.) Ah, who am I kidding everyday is nuts around here, but yesterday was especially insane it seemed.

It started with the cable guy.

Our Cable and Internet are included in our rent. They aren't the best services, but they're free, so I don't care. I don't complain too much. Well recently the cable company needed to upgrade the boxes, and went around to all of the condos installing them.

They missed us.

So fast forward three weeks, and I finally get someone to come out to switch our boxes. On Twitter I always get tweets from people saying how cute their cable guy is, former marine, dark hair, buff body....you get the picture.

But this is me we are talking about people. I get the scary looking fat guy that has greasy hair and way more body hair than any human should ever have. Never mind the fact that he has absoutley NO idea what he is doing.

Seriously.

He kept hooking up the cables, and couldn't get the sound to work. Everything he tried seemed to fail. He was breaking a sweat while messing with the cables. As I was sitting on the couch ~~Totally tweeting about it.~~ watching him, he reached down and scratched his ~~nuts~~ unit.

I sat there for a second before thinking to myself, "This guy did NOT just scratch himself in MY living room."

My breakfast quickly started rising in the back of my throat. I so wanted to hand him some hand sanitizer, offer him some scalding hot soap and water, something.

After some more messing around with the cables and eventually calling for reinforcements we finally got the cable to work, however all of my HD channels still don't come in. So something isn't hooked up right.

Oh well. I would much rather be without my HD than watch Mr. Scratchy Scratch sitting in my living room, while I sit there and wonder where else those nasty hands have been.

After he left I got out the trusty Clorox wipes and wiped down everything he touched. Then I got out the Lysol and sprayed everything again, for good measure.

Of course my Tweet friends wanted to know why I didn't get a picture. Simple answer is that I really did think about it, but my phone makes this little clicky sound when you take a picture.

What was I supposed to say? "Hey dude I really can't believe you just scratched your nuts in my living room, do you care if I snap your picture? Because my Tweeps are never going to believe this....Oh, and while I'm at it, let me give you this twenty gallon back up container that I have of hand sanitizer."

Welcome to my life people. Welcome to my life.

After the whole Cable Guy incident, I thought things couldn't get any worse.

There I go thinking again. Why don't people remind me how dangerous it is for me to think?

Rhett was playing on my bed, and all the sudden I hear that dreaded gooey gurgling sound, and then Hunter. "Ewwwww gross!!! Mom his G-tube!!"

Rhett jumps off the bed and goes running down the hall gurgling.

I run and grab him, get his emergency gastrostomy kit, as well as his two tubs that we keep on hand and full of medical supplies at all times.

It's like a scene from ER with me ripping open gauze with my teeth to cover his stoma hole, holding him down with one hand, filling up a syringe with the other hand, using my elbow to keep his gauze over his stoma, then filling up the balloon of his mickey button to see if it just fell out, or if it has a hole.

Well of course it has a hole in it.

I open up a box that has a brand new Mickey Button in it, and fill that one up as well to make sure there are no holes in it.

This one has a hole too.

So out comes the ghetto Foley catheter. Thank you God, this one doesn't have a hole in it!! I lube it up with KY Jelly and slide that sucker in. Rhett flips out and crunches up his stomach muscles and pushes really hard. The plug that is in the Foley Catheter pops out, and since you know, I just fed the kid, he has plenty of goo to push out.

The plug wouldn't stay in so I ended up clamping the tube by bending it and taping it to his chest. I know-I have totally awesome Macguyver skills.

All of this is done by myself, with a squirming three year old who, during this time has sprouted 8 arms and legs and become an octopus.....and it was done in under 7 minutes.

There should be an Olympics for special needs moms or something.....

-How fast can you switch out a G-tube?
-How quickly can you put in an NG tube AND get it in the right position?
-Can you hold down a 3 yr old and change a poopy diaper that's filled full without getting it all over the carpet and/or bedspread, all the while trying to keep the dog from licking everything?

I could win some serious gold medals.

This is what the aftermath looks like when you have a g-tube emergency and you are all by yourself.

Fortunately Home Health was able to bring out a new button.

Unfortunately for us, our insurance only covers 1 button every 3 months, and the spare we had was just received last month. We had to order two buttons, one to put in now, and another back up, so we just paid for two buttons out of pocket. And really, at $156.00 a pop, we didn't have the money to pay for it.

There went gas and groceries. Sigh.

All I can say is why Universe, what did I ever do to you?

I am adding a Pay Pal button, mainly because we are going through a super tough time right now financially. Andy's pay checks take home have only been around $150-$300 take home. Our insurance premiums are killing us, but we have to have it.

Car sales aren't the best. We are currently looking for a new job, myself included, but until then I don't know what to do. We have sold everything we own over the last three years, lost our home, depleted any savings and 401k that we once had. We still have to pay rent, utilities, have gas and feed our kids. Our family can only help so much.

When you take into account that any extra money we get usually seems to go towards medical stuff. (Rhett's buttons, Chloee's new glasses, etc...) It becomes super frustrating.

I am also working on doing some raffles, and we have some great products that companies have donated, so look for that in the coming week.

Above all thank you for sticking this out with us, through the good times and bad. We appreciate all the prayers and the friendships that we have found.

God Bless

Turtles, Rachel Jammies, and Best Buds.....

2009-07-06T23:54:00.000-07:00

Okay first of all I have no idea why this picture keeps showing upside down. I am blaming it on blogger, because everywhere else I post it, it's right side up. Don't believe me? Look HERE.

Just for reference, no I DO NOT make my kid sleep on his head.

Okay. On with the post. These are Rhett's Rachel Coleman jammies!! Aren't they just cute? They have been hanging out over at my friend Amanda's house for a while, but we just got them back.

I do however make Chloee sleep among MANY pink things. She is so girl.

Her and Rhett now share a room. She sleeps on the top bunk and Rhett sleeps on the bottom bunk. Rhett's secure enough in his masculinity that he's cool to be in a room filled with pink fluffy things.

Hunter and Rhett are having a blast this summer. Rhett loves having Hunter home with him all day. He looks up to his big brother, and thinks he walks on water. Best friends, that's for sure.

We hang out at the pool alot.

"Am I not turtle enough for the turtle club? Turtle Turtle!" (Ten points to whoever can name that movie quote.)

Memo to me....Swimming is much easier with the tongue out.

Chicky Boo lurves to cheese it up for the camera!

Rhett-a-tett hanging out by the pool watchin' all the hotties.

Hunter has been eating me out of house and home. The proof is in the pictures people. See that? TWO. Count em. One. Two. Ice cream cones! Okay, maybe one was Rhett's that he was opening.

Sugar and Spice and Everything Nice....and Snips and Snails and Puppy Dog Tails....

Boo-A-Roo is really enjoying the fact that she can see. Her headaches are much better, and she just looks so darn cute in those glasses!

I had an ultrasound done today for my gallbladder. As soon as we get the results back we will decide to take it out or not. Chloee will have her tonsils out next month, and I still need to get Rhett's surgery scheduled to have the wire removed from his chest.

Right now though I am just enjoying the summer with my kidlets.

That's the most important thing.

How Do You Get Rid Of ANTIVIRUS BEST?

2009-07-06T12:14:00.001-07:00

This stupid program has overtaken my computer and keeps shutting it down. It first appeared on facebook, and I can't delete it in my control panel. I thinthinks it's malware but not sure? Any thougts?

The Three Stooges....

2009-07-03T21:21:00.000-07:00

These guys crack me up. This first picture kills me. Talk about Bird Beaks. They all have the same nose. I don't think I've ever really noticed how much they look alike. Poor kids. With schnauzes like mine and Andy's they don't stand a chance.

This one was from tonight. They were sitting on the ceader chest in my room watching the fireworks out the window. For some reason our neighborhood sounds like Bagdhad. The dog is under my bed whining and Rhett keeps trying to pull her out telling her it's okay.

Things still suck right now. But maybe just maybe there could be light at the end of the tunnel. Anyone work for any manufacturing companies that are hiring right now? Car sales suck.

That's all I'm sayin.

May you all have a happy 4th of July.

Now go eat a cherry snow cone, light a sparkler, and enjoy the holiday!!

I've Had Enough of This Emotional Roller Coaster....I'd Like To Get Off Now Please.

2009-06-30T21:55:00.000-07:00

I'm done.

I've had it, and if everything could just go our way for a while, I would be ever so grateful.

Is it too much to ask? You know that saying "God never gives you more than you can handle?"

Yah, well I've had enough and I can't handle anymore.

I'm a mess.

I haven't posted for a while because I haven't had anything great to post. I wanted to write a good post, an upbeat post. But everytime I sat down to do it the words wouldn't flow, and I realized it's because in trying to be upbeat I wasn't being honest, not with myself, not with anyone.

Things aren't great. In fact they suck rocks right now.

Thank.you.very.much.

It's not like there is one major thing going on that I am upset about, it's everything. All the stupid little things that are eating away at us are making it so I can't function. I'm sick to my stomach all the time with worry. That and Gallbladder issues still, but mostly worry.

I hate walking around wondering to myself all the time, what is going to happen to us from month to month, week to week, day by day.

I am thankful for Andy's job, but in the same breath I hate it. They are always finding someway to dock his pay for one thing or another. Saying he gets bonus money, then when he only makes the minimum wage instead of above, they take out his bonus money from the paycheck. Somebody please tell me how we are supposed to take care of a family of 6 on 149.00 for two weeks. Then you think, oh well I can get help from the state. Woah ho. No sir, everything is by gross income, and we make juuussssttttt enough over the limit on gross so that we don't qualify for help. Sucks to be us that we have insurance premiums and stupid people that come up with ways to make your paycheck out to be nothing.

Then there is all of these issues going on with the kids.

Dakota is on testosterone and holy cow talk about mood swings. Maybe the whole thing with him not going through puberty would have not been so bad. (He has Klinefelter's syndrome, which is a chromosome disorder. He is XXY instead of XY.) So with these supplements it's causing his body to be in a huge rage of hormones, and by golly he knows everything.

I know. Welcome to being the mom of a teenager. All of the sudden he has a mustache, so I found myself in the shaving aisle at Walmart thinking, I am only 30 yrs old. How is it that I have a son who is shaving.

Well, I know how it happened, but still it's a big wake up call.

Hunter is doing well, but he is the type of kid that thinks it's up to him to make peace with everything. He has become more like a parent to Rhett than a brother, and I am finding myself thinking that I haven't let him just be a kid lately. He hasn't made many friends over here, mainly because there aren't many boys his age. They are all girls. But I depend on him alot because there is no one else to help me with Rhett, and I know it's bad. It's really bad. I just don't know what to do.

He worries about Andy and I. He thinks we are going to get divorced because of all of the stress in our lives. I am beginning to wonder if he has really been asleep late at night when Andy and I have been talking about things. We try to keep the grown up stuff away from the kids, but we do need to talk about things, and late at night seems to be the best time to do it.

Hunter carries the weight of the world on his shoulders, and it makes my heart hurt.

Chloee. Ugh. Many of you know that we have been fighting headaches with her for the last year or so. We have had MRI's scheduled, but they always seem to fall through for some stupid reason or another. Referrals not filled out right, no money to pay for it upfront due to no insurance, blah blah blah.

I have gotten so sick of the run around. I have asked the Dr's if it was really necessary, given that the CT she had came out normal. Well, they were worried given her past neck issues and thought that she possibly had a Chari Malformation. Now I'm not saying that she doesn't, and she DOES certainly have symptoms of it, but I kept thinking, I feel like I am just sitting here not doing anything for her headaches, there has to me something else that can be done besides doping her up with pain medication and Zofran.

So I took her into the Eye Dr.

The girl is blind.

Translation=Guess who got glasses?

She looks cute as a button.

Her prescription is very near what mine is, and I am telling you right now that I am blind. I can't see anything 1 ft in front of me. She is nearsighted just like her momma.

When they first put her up in the chair and asked her to read the letters, starting with the 3rd row down, she couldn't do it, nor the 2nd row, nor the 1st row.

But. She did get the very two top letters.

You know the ones that look like this.....

SL

So I guess she can kinda see right?

Based on these findings I can see why this could have been the culprit for her headaches.

Will it completely cure them? I don't know.

Is $170.00 for glasses better than $2000.00 for an MRI? Most certainly.

As of today she still is having the headaches. But new glasses alone could cause that. She has been wearing them for a few hours, then taking them off for an hour to get used to them. She only has had them since yesterday, so time will tell.

Life would be beautiful if this was the simple answer to our question.

Last but not least, Rhett. Oh Mr. Rhett. I am sure if you follow me on Twitter or Facebook you know all about what is going on with Rhett. Last week we had a cardiology appointment. He had an Echo done, an EKG, and chest xray.

This was the first time we have ever attempted doing an echo without sedating him. He actually did really well. He kept sticking his finger in the goo and wiping it on me, but other than that, he held still and did everything we told him to. I was impressed.

We discussed the leakage around his tricuspid valve, and I know in the past I have said it was his mitral valve. For some reason I kept thinking that was the valve that had the issues. I dunno. However the Mitral valve is the one that is working well, and the tricuspid valve is the one that is giving us grief.

Anyhow. He has some pretty serious leakage going on there. Dr D said that he wouldn't go so far as to call it severe right now, but it's getting there, and with each echo it gets worse.

Which would explain his being tired, the mottling, and the black circles around his eyes all the time. It's not something that needs to be fixed right this second, but we are preparing for another OHS in the future. We don't know exactly when it will be, just that it will happen.

We were also there to discuss the possible narrowing of the coronary artery that Dr. D had suspected, however when we looked at the chest xray we noticed something that could be causing Rhett's chest pain.

See when you have OHS, after they crack you open, (sorry for the visual, I just can't think of anything else to say. It's late. Sue me.) They have to wire you shut. Well given that Rhett was only 4 months old, and 7lbs at the time of his OHS, he has grown quite a bit. It's common for the wires to break as a child grows, but because they are actually in the bone, they generally don't cause any issues.

However. This is Rhett we are talking about. Murphy's Law according to him, is that if something generally doesn't cause an issue in the general population it will be an issue for him.

Such is the case with the pesky wire at the bottom of his sternum right before it ends. He has a wire that has broken and is actually protruding every which way you can think of and poking him in 2 different spots.

Guess who needs surgery to remove that darn wire.

Gah. I know huh?

But before we can do that, Rhett decided that he couldn't just keep things calm around here so he decided to develop a raging infection around a tooth, up into his upper lip, and all the way across the right side of his face into his eye.

See? Under his right eye, how swollen it is? Kinda looked like someone socked him.

A full head shot. You can see his upper lip is swollen too. We call him a Whomodo, which is a cross between a Who and Quasimodo.

Apparently Loratab makes you fall asleep in unusual places.

Not one of better days.

Apparently Loratab can also make you feel extremely happy as well.

Sitting on the living room floor watching Signing Time, and signing "Cow". Leah's farm is still his all time fave.

Yah, so that is what landed us in the ER over the weekend, and in the dentist office this week.

Good news? Rhett did everything the dentist asked him to do, including opening and closing his mouth and keeping his mouth closed and biting down on the little card thing for an xray. In fact he left teeth marks in it he bit down so hard.

I have a hard time biting on those things without gagging, but Rhett was a champ.

Long story short we go in a week from Thursday to have it extracted. It will be done just in the office and not under general anesthesia in the OR. He is on some heavy duty antibiotics and Loratab for pain, and he looks like a cross between a Who and Quasimodo, but he is hanging in there.

I wish I could say the same for me. I have hung in there for so long that all of this crap has me at my wits end. It's alot for 1 person to deal with. Especially when you add in our normal stuff, which for the typical family would be abnormal.

I'm not quite sure what to do anymore. You would think that this hanging by a thread would stop after a while, but it doesn't. I just keep on hanging.

I really am ready for our lives to calm down. I wish I could take a lesson in Rhett's philosophy of life, and continue to battle everything and smile through it all. But I'm tired.

Super.Duper.Tired.

Long 2 Days.....

2009-06-18T16:47:00.000-07:00

Heh. Sorry for the lack of updates. I have a new growth on my side that's about 31 lbs, 36" tall, and has a mohawk.

So we ended up getting to the ER about 9 pm, and didn't get back to a room until after 10:30. When we were triaged they put in a 6" foley catheter in his stoma, it was the smallest they had, and it barley fit.

He was the slightest bit perturbed with that.

We went and sat in the xray waiting room away from all the disgusting kids that were in the ER.

Seriously, this lady had 5 little girls under the age of 6 and she should not have been a mom. Those poor little girls had snot caked on their faces, their hair was ratty as could be, and it was 65* out there and the mom had them dressed in hats, coats, and gloves. The poor things were sweating to death and hacking up a lung all over the ER. They were running around and looking at all the babies in car seats and strollers and coughing all over them. The mom just sat there and laughed at them.

I think once they were triaged we all took a vote and it was unanimous that they get the next available room. Thank heavens the nurses agreed and shuffled them out as quickly as she could.

I then proceeded to grab the wipes that were sitting at the check in desk and wiped Rhett's chair down. I kept walking away whenever the girls would come up to us, and telling them that Rhett was really sick and they didn't want to come near him.

Ya. I lied. But I'll be damned if they were going to touch my kid.

I don't blame the girls. I blame the parents.

So anyways, we walk down to the xray waiting room where there are not so many cooties, and sit down. Not 5 min after that I realize that Rhett's gurgling from his gut again and his foley catheter is dangling from his wheel.

So. I head back into cootie land and this time the nurse grabs a 10" catheter because his stoma has opened up a bit.

We meander our way back to xray, and watch the fish for a bit, then they come and get us and take us to our room. Not 5 seconds after we get into the room the foley falls out again.

Now for those of you that don't know, the catheter is inserted and there is a balloon at the end of it that you fill up with 5cc of water. These balloons kept popping. Which is what happened with his original Mickey Button. So just to get you up to date, this is the 5th balloon that has popped in him since 6 pm that night. (He popped his foley catheter that I put in him at home as well.)

I hit the nurses button and they come in with a bunch of different sizes of foley's to try with him. They try a 12" but can't get it in so they go back to a 10". We get it in and get him all taped up and put him in his chair. We settle down and watch some TV for a bit.

Then he explodes.

All.over.both.of.us.

I never knew that a little body could hold so much poo.

I open the door, (before him and I both die of noxious fumes) hit the nurse button, and start the clean up. As the nurse walks in guess what falls out?

His freaking catheter.

I was so done at this point.

The attending came in during all of this and wondered aloud after hearing how many catheters he had gone through wondered aloud if for some reason he had super high acidity in his stomach for some reason. Maybe a bug, who knows. So she decided to give him some antacid.

So this time they are able to get a 12" in. Which is only 4" away from his usual 16" button. It was a tight fit, and he bled a little but it worked.

So after Rhett is all cleaned up, we decide to keep him semi naked for the time being. You know. In Case he tries to explode again.

I leave him in with the nurse, and go into the bathroom to change into a purdy pair of scrub pants that they were nice enough to hand me.

He hangs out for a bit and we watch some more TV. No more explosions, and his catheter stays in.

By now the resident is feeling cocky and decides that we can put the 16" button in. I sigh and tell them okay, but if it doesn't go in easily then I want to talk to surgery.

Well, he starts pushing it in slowly, and he gets it half way in and it gets stuck. He tries pushing it in, but doesn't want to put too much pressure on it, so then he tries to pull it out. Well when he pulls on it Rhett freaks more than putting the pressure on it to stick it in. So I tell the resident, "Here just let me do it. and I push down on it really quick. Rhett jumps and then is fine.

We fill up the balloon and he cries, but I don't blame him. He's been through a lot.

So all in all, his stoma is super irritated, and I wonder if it hadn't have been better just to leave the smaller foley in for a while, and then follow up with general surgery the next day.

You know, someone who deals with this stuff all the time and knows what they are doing.

Anywho. He's super sore. He's very clingy and once again completely traumatized. He's also sleeping a ton. I'm hoping we don't end up with an infection.

Here he is just after he exploded. He feels much better can you tell?

Awww, nuts....totally busted playing with my "No, No's".

This was just after they put the 10" in. Not a happy camper.

This is a close up of his stoma. You can see how irritated it is, after being stretched so much. You can also see how the tissue came right over the hole trying to close up. Sorry, kinda graphic I know.

This is what he has been doing a lot of since the whole situation. He likes my bed. It's a little more comfy I guess.

Today his stoma is still bleeding and he's not feeling the best. He's super grumpy, and cusses me in 3 yr old language each time we change his dressing.

Yesterday we did a lot of cuddling and not much else.

These are the days of our lives.

Helloooo PCMC....

2009-06-16T18:06:00.000-07:00

We are headed up to the ER. Little stinker snot pulled out his G-tube and it won't go back in. It's almost all the way closed over.

Puh-leeze say a prayer that they can get it reinserted w/out surgery. He uses his g-tube ALOT, and can't be without it right now.

Gah! If it's not one thing it's another eh?

Sleeping Among Stuffies.....

2009-06-15T21:22:00.000-07:00

My kids are big stuffed animal lovers. Our house is plumb full of stuffed animals.

Big ones, little ones, and every thing in between we have them all. Chloee would rather play house and use one of her Build A Bears than use a doll any day. Most of her animals have clothes, and bottles and diapers, and ya. It goes on and on.

Rhett is the same thing too. His favorite is stuffed dinosaurs. However stuffed dinosaurs are a little tricky to find. Granted Rhett loves all things dinosaurs. He will play dinosaurs for hours.

Anyways, off subject here. Chloee loves her stuffed animals so much that she can often be found sleeping amongst them. Sometimes it can be hard to find her in the pile.

She kinda reminds me of ET. I just pray that one day I don't go into her room and find an alien amongst them.

I might just wet my pants if I do.

When it comes time to weed toys out around Christmas and Birthdays we always have a hard time getting rid of the stuffies. Each one is loved and has it's own place in our family.

Although many days I can be found kicking them out of the way and telling the kids if they don't pick them up I will throw them away, in all reality I wouldn't do it.

Every dog, cat, bear, dinosaur, bunny, giraffe, duck, and everything else in between is a part of us. We wouldn't be complete without them.

Just so you know.

I blame it all on Build A Bear.

Who would have ever thought to dress up stuffies in regular clothes and have every type of accessory under the sun?

And of course I wouldn't have fallen prey to their evil ways and thought OMG!! How cute is this?!?!?

Okay maybe I did. Sue me.

Random Things That Make Me Go Hmmmmm....

2009-06-11T22:02:00.000-07:00

I have been on the Internet non stop for the last few days. My retinas are becoming detached and my eyes are burning from reading so much.

So tonight when the dog barfed on the bed and I realized that it was time to wake up and smell the, well.....barf, I went into the kitchen and realized just how out of it I have been.

I mean, I haven't been neglecting things like the kids or other important stuff, but I can tell that my mind was elsewhere when doing certain things.

Like the salt for instance.

I started making Mac and Cheese, and realized I had put the salt in the cupboard upside down with the little twisty top open. I lifted it to find a nice salt pile awaiting me.

Then there was the whole diaper thing. Apparently I put Rhett's wet diaper in the dirty clothes hamper rather than the diaper pail. (In all defense it was a cloth diaper, not a disposable so I was thinking in the right general area.)

The potty trained thing? Well, we had a major setback with that after my mom watched Rhett for a day. She got upset at him because he stood up from the potty and pooped on the floor, so now he is afraid to use the potty.

SIGHS.

So after all of this, I started to wonder about random things.

Like am I the only one to pick up a washcloth thats hanging off of the tap from the sink and wipe down counters or the kitchen table only to smell your hands afterwards and it smells like mildew?

Does anyone else forget that last load of laundry for the week and leave it in the washer for a few days, and every time you walk past the laundry room think, what the H-E-double-hockey-sticks is that smell?!?!

What about forgetting to hang up towels in the bathroom after you have taken them down and put them in the laundry. Are you often found running buck a** naked through the house to the laundry room where the towels are stored just to get a clean towel?

What about drinking milk from the carton? Do you ever smell it and take a swig before pouring it in your kids glass "just to make sure it's safe to drink?"

Have you ever looked at your kids sitting in the middle of the floor watching TV with a box of Cheez Its and think, "Eh, they have been eating all day. That will do for dinner."

Also, can I count swimming as their bath for the day?

I know. Eww huh?

I'm just keepin it real folks. Keepin it real.

Oh, and for the record? I am totally back in my blogging mood and coming out of this funk.

Oh how good it feels.

RIP Sesame Street Couch....

2009-06-11T15:10:00.000-07:00

See this couch?

Ya, Rhett loved that couch. He sat on it every day and it's even sat on my side of the bed at night folded out ,so he has somewhere to sleep when he is too sick to be in his room alone at night.

Last night I realized that the foam was all stinky and looking moldy on the inside. I opened it up, and some how...Probably from the gagillion sippy cups of water and rotten milk that are always laying around....it got soaked into the couch and the foam is all ruined.

I can't complain though. I mean we have had it for over 2 years, and for 30.00 I really think we got our use out of it, ya know?

We will get him another couch for sure. Hopefully we can find another one with at least Elmo on it.

RIP little couchy. We will miss you.

Probably Opening A Can Of Worms Here....

2009-06-10T14:18:00.000-07:00

However in the past I have many conversations with fellow bloggers who have often wondered why some of the big name bloggers get so much attention when they're stories are just a few of many out there who have gone through the same thing.

In fact many have gone through much worse.

I can think of 10 people off the top of my head who deserve so much recognition for the trials that they or their families have gone through. Yet they are out there not to exploit their children or make money off of them, but to raise awareness.

These people don't have ads all over their sites. It's all just a part of a united front of moms who have children with either special needs or whom have medical challenges.

While reading through the bloggy world today, I came across this paragraph written by a fellow blogger, and thought that I would share it here, as I completely agree with what she has said.

I just want to say that there is an element of fame that comes in when someone has a blog with a huge readership. I'm sure it is very hard to stay down-to-earth when you have people literally worshipping the ground you walk on. It's always seemed off to me. I think these are real women who get get sucked in to what everyone is saying about them. Their egos are affected, just like a movie star who is suddenly thrust into the limelight.

I would ask everyone to step back and take it all with a grain of salt. These are REAL women. They have their faults and shortcomings like the rest of us. No amount of great writing (accompanied by beautiful photographs) is going to change that. They do not necessarily know more than you do, about life and raising children. They are not better wives and mothers than you are. There is no reason for you to look UP to them. I think it is dangerous when they are placed on a pedestal and constantly told, "You're so funny, you're so smart, you're so great!" They put their nursing bras on one strap at a time, like the rest of us.

The internet creates an environment that is very, very unique. You can pick and choose what you want to show people. You pick the pictures going out there. You edit them, you make everything look the best it possibly can. It's NOT totally genuine. I do the same thing. If I have a pile of laundry on my sofa and my kids' dirty socks and shoes on the floor, do I include all that in a picture of my new coffee table? No! It gets cropped.

Please take into consideration that most bloggers are "cropping" their lives for you. They're taking out some of the bad, and then adjusting the lighting and color and putting a nice rosy glow on everything. I know so many women who feel inferior and feel that they just aren't good enough, because they compare themselves to bloggers.

Please, please, please stop looking at the big bloggers as if they are leaders. They're not! They're just regular old people like you and I. They yell at their kids sometimes. They skip showers. They argue with their husbands. They forget homework assignments and bills and playdates. They're HUMAN like we are! Their creative talent is what sets them apart. That is only one aspect of a full life.

I thought this was so true, and I know so many other mom's out there who have amazing creative talent, even more so than these big name bloggers.

But what sets us little folks apart is that we are out there to raise awareness. It's not about how many hits we have or how many followers. It's not a show about who has the most perfect life.

It's about life in itself.

My life is not perfect, and I hope I have never portrayed that, as sometimes I myself have sat there and thought, should I sugar coat this so that I don't sound like a desperate fool?

But in all reality this blog is for us. It's so that we can look back at our past and see how far we have come. If we make a few friends along the way, all the better.

I know for me, my life has seemed to me to be in shambles the last few months. I feel like my relationship with Andy has gone to the pits becuase he is never home. My heart hurts because I am begining to resent the fact that he can come and go as he pleases, and just the fact that he knows where nothing in our house is makes me feel like I am failing as a wife.

I have gone to some of the big blog sites and read about how perfect their lives are with their husbands, and how they fix organic meals for their kids every night, and I look at my kids eating Ramen Noodles for the 4th night in a row because it's all we can afford. It makes me wonder what I have done wrong.

After reading the above paragraph though it made me feel so much better.

I am normal. I am human. I blog because I love to, and it helps me sort things out.
It's not about attention, money, or portraying an "I am better than you" type of lifestyle.

It's a history, and it sure saves me from getting some serious cramps in my hand from writing in a journal.

Granted I am sure that I will eventually end up with carpral tunnel.

Murphy's law ya know.

Am I guilty of cropping out a messy living room or bedroom?

Oh yeah.

Am I guilty of photoshoping myself so that I look presentable to my online friends?

Of course! That big pimple on my nose....buh bye!!

But when it comes down to it, my writing is honest. I don't care who thinks what of me.

I sincerley hope that I didn't offend anyone. It's not about trashing people. Far from that. It's just that that paragraph touched me, and I felt like I needed to share it.

Two Super Hero's and a Butterfly...

2009-06-09T17:47:00.000-07:00

Saturday we had a chance to go to a kids fair at Wheeler Farm in Salt Lake.

It was cheap fun, what can I say. For 2.00 per person you got a wrist band and got to do activities all day long.

Including Face Painting.

Chloee was a very pretty Butterfly.

Dakota was Spiderman. I had to make Chloee stand next to him though so that he would let me take his picture. He really dislikes cameras.

And Rhett was The Hulk.

Rhett's done The Hulk impression since he was just a little guy. Like when he was just a year old. It's so funny. He puts his arms out, squeezes his eyes shut, puffs himself up, and goes GRRRRRRRR!!!!

He doesn't turn green though....we are still working on that.

We have been spending alot of time swimming in the pool at our condo. It was closed for a while due to the fact that alot of the condos sat vacant over the winter. Now however it seems like we have new neighbors moving in each weekend. The kids have made some good friends, although it still surprises me how many people new people we meet.

I have gotten into a bad habit of not wanting to take Rhett outside and on the playground without wiping the whole playground off with Clorox wipes. When I do take him out the second I see someone coming I tend to go inside.

I'm beginning to think I am a bit OCD when it comes to germs.

Oh sure I'll take him out into public, but for the most part he is in the confines of his chair, and I don't let him get down too much in crowds. If we do go somewhere, like to the aquarium we try to go on weekdays when it isn't crowded.

Last week when we spent time in the ER I was freaking out as we were triaged. There were so many sick kids in there, and Rhett was up there for heart issues. He hasn't been sick in months. <---Totally knocking on wood.....

I was so thankful for our awesome RN Dave, who watches out for Rhett so much. He told us to go wait in the xray waiting room so that we weren't around so many sickos.

That same night there was a child that passed away from the Swine Flu just one floor above us.

It's that kind of stuff that just scares the beejeebers out of me.

The MTC in Provo has over 43 missionaries quarantined, and 4 confirmed cases of Swine Flu. We have a friend who works there, and she is disabled. She has a disease that whenever she gets sick, it targets her brain. She wasn't supposed to live past the age of 2, and she is now 21. She has been kept home from work for the last couple of weeks until they have no more missionaries with symptoms.

Over the last week or so the cases in our state have jumped from the 200's to the 700's. It seems to be spreading quickly. I mean I know that it is acting much like the regular flu, however with all of Rhett's underlying health issues, the flu could be so much more for him.

For now we will just say our prayers each night that we continue with our healthy streak.

We don't need any of them bad boy germs coming around.

Good thing I have some superheros to fight them off for us eh?

Two Can Play At This Game.....

2009-06-07T23:17:00.000-07:00

Rhett has been eating by mouth really well the last few months.

So much in fact, I haven't been using his g-tube except at night every now and again, and of course for meds.

We rely heavily on his g-tube for meds. He is awful at taking them.

Ever seen Spiderwick Chronicles where Hogsqueal spits in Jared's face to give him "The Sight"?

Ya. That's pretty close to exactly what Rhett does when you stick any type of syringe into his mouth.

But for serious, do you blame him? Not only does he have some awful tasting meds, but he has had so much of them, that he is pretty much traumatized for life.

I can just see him now, an old man with no teeth...(cuz his teeth are crap now, so they will probably be rotted out of his head when he is all old and wrinkly too.)...spitting his meds all over us. By then I'll be old and wrinkly too, even more so and I'll probably be senile as well, so I'll just smack him on the head with my purse.

Who knows? Maybe between Andy, Rhett, and I, we will all have three recliners in a row in our living room, and each have our own oxygen concentrator sitting beside each of us. It will be like our own little symphony of oxygen.

Humm, Humm, Poof, Humm, Humm, Poof, Humm, Humm, Poof.

Maybe I can spit my meds on him too.

Dang. I have so much to look forward too. I am getting overly excited here......

So anyhow, the G-tube.

We haven't used it for feeds much, but lately Rhett seems to be developing an oral averison and I'm not quite sure why. There are only certain things he will eat, and I know he's not getting the nutrition he needs, because he is starting to loose weight. He is down to 31.8 lbs from the 33 lbs he was a few months ago.

He has a fascination with chips. Or as he calls them blips.

He will eat blips all day if you will let him. The second his beady little eyes are open each day he is asking for blips. He loves blips and salsa. He can't get enough of that stuff.

He also likes Chicken in a Biscuit crackers.

Those seem to be his staples in life.

He will still eat bread, and will eat a peanut butter and jelly sandwich every day of his life if we would let him.

That and fruit. He is in love with peaches.

But that is pretty much it. He has never really eaten meat, but he used to love carrots, corn, green beans, fruit snacks, cabbage, cauliflower, pizza, spaghetti, mac and cheese, and eggs. But now he just refuses them. Turns his nose up, and throws them on the floor.

I get so sick of just watching him eat chips.

I have withheld them from him to see if he would eat a meal, and he still refuses.

This has been going on for about 2 months now, so today I decided that his minimal diet needed something more. If he wants to play the "I don't want to eat game," then I will play the "You are totally back to bolus feeds through your G-tube during the day buddy, game".

He's gotta have some type of nutrition don'tchya know.

I know some kids go through spurts where they will only eat a certain food, but this has gone on for so long, and I have been trying to get him to try different things, and failing for so long, that I have taken things into my own hands.

My only thought though is this. Is it just a phase? Or is it something that I need to address with his GI dr, or his ped?

I know they are going to tell me just to continue what I am doing, but could there be a reason that he doesn't want to eat? I don't want to put him through more testing, and any time I bring something like this up with any dr, they always err on the side of caution given Rhett's history, and will poke and prod him to no end, just to be on the safe side.

Some days I want him to just "be" ya know?

He tolerates his feeds well, albeit he needs a little more burping, which is fine, I don't mind venting him one bit. His stools are normal, he has normal wet diapers, even more so now that he has his diuretics on board again....holy schmoly can that kid pee.

I dunno know what to do. He has been really grumpy, like head spinning in circles grumpy, for the last month, but I wonder if it is related to this or if it's all behavior.

He misses school. He asks to get on the bus every day.

He will start summer school on the 16th of this month for a few hours two days a week, so I am hoping that will help.

Do I read into things too much?

Sometimes I wonder if I should just leave him alone and let him be a typical kid. But he's not typical health wise, and some things can't just be overlooked.

Maybe his recent heart issues are at the center of all of this not eating stuff. In fact now that I have emptied my brain, it makes sense. When he had his heart issues before his surgery we struggled to get him to eat as well. He had little if any appetite.

For Pete's sake he was only 7 lbs at 4 months old.

Huh. Maybe I answered my own questions.

Have you ever had a kid who stopped eating for no apparent reason?

I would love to hear your experiences.

And In Other News.....

2009-06-05T14:17:00.001-07:00

So yesterday we spent alot of the day going back and forth between cardiology. So much to take in. So much.

Rhett is in 2nd degree heart block. We know this. They have added some drugs to his list of things that he already takes. It seems to be helping. Which is what we want. Medication vs Surgery is always a much better route.

I know that eventually he will have to have a pacemaker. I know that more than likely he is going to need a mitral valve replacement.

It doesn't mean that I have to like it.

I guess the good thing about all of this, is that we know about it, and it's not something that is all of the sudden going to become an acute illness that has to be done **NOW**.

We can prepare for it, and know that it is coming in the future. We just don't know how far in the future it will be.

However after looking at chest xrays, bloodwork, and EKG's Rhett's cardiologist has a new worry. He thinks that there is either a narrowing of the coronary artery, or there is, and I don't know if I am explaining it right or not, but he thinks there could be something that is squishing the coronary artery as Rhett exercises, (plays, runs around, acts like a wild banshee).

So we have an appointment at the end of the month, and will go over everything again. Run EKG's , bloodwork, and chest xrays. We will also be doing and Echo.

Then, and this is what scares me, they want to do a heart cath on him.

I know it sounds stupid that after everything Rhett has been through that I would be afraid of a heart cath.

But would you believe that with all of Rhett's heart issues, he has never had a cath done?

Nope, not one.

I don't like the risks involved, but at the same time we need to know what is going on, and it's also a great time to just go ahead and get an accurate number on his pulmonary pressures for his Pulmonary Hypertension.

You know. Just for good measure.

His medications that he has been on seem to have been working well for his pulmonary pressures. His chest xrays show that his heart is not super enlarged as it has been in the past. Which is great.

It's so hard being a heart mom. You get so much information all at once. Then you have to decide what to celebrate and what to be worried about. I don't think we have ever been able to just celebrate anything with Rhett's heart. There has always been the "This is looking great. But...."

I don't like the buts.

I have never quite been on a roller coaster ride such as this one.

However through it all Rhett is a trooper. He is thriving. He is a big boy and has come so far developmentally. He is so much like a typical 3 yr old, and considering all of his battles he has fought, and that he has Down syndrome, he seems to be kicking some serious butt down here.

I truly believe he has a mission, and he is here for a reason. I'm not sure why he has to go through all of these health issues, and I'll be honest I think it sucks for him. His health issues are not a blessing. But Rhett is a blessing. He is an amazing fighter and loves life, living it to the fullest with every single breath he takes.

I think we could all learn alot from this three year old.

Rhett, Put The Dog Down!!

2009-06-02T23:01:00.000-07:00

Rhett loves our little Yorkie, Roxy. In fact sometimes I wonder if Roxy is another Rhett trapped in a dogs body.

They shred papers together.
They eat dog food together.
They lick each other.
They both bark when someone comes to the door. (Okay Rhett hollers DOOR!!!!)
They both eat sand.
They are both obsessed with water.
They run around in circles at night just before bedtime.
They share fruit snacks.
They share an obsession with poop.

You get the idea.

We are lucky to have such an amazing dog that will tolerate pretty much anything Rhett dishes out.

She weighs about 5 lbs and so she makes an easy target for Rhett to pick up and pack around the house like a rag doll. We have finally got him to pick her up under her front legs now though. Before he would grab her by the head.

Ahem.

If you were to come to our house on any given day this is what you would find.

"Rhett, be careful with the dog....

"Rhett, let go of the dog...."

"Rhett, put the dog down..."

"Rhett, get out of the cupboards and come get dressed, you can have a fruit snack later..."

"Roxy? Seriously you get out too!!"

A boy and his dog, haven't decided yet who is more trouble. It's probably sixes both ways.

On another note, Chloee won a bike from school!! Every time she did her reading for the month she would get to put her name on a token and put it in a box in the office. Then at the end of the year they do a drawing for a boys and girls bike.

Chloee happened to be the one who won the girls bike. She was so excited. She needed a new bike bad. Her other one was broken and really worn out.

Now she has this pretty new one!!

I'm telling you the girl has a lucky streak in her. We have decided that Rhett needs to rub her belly each day for good luck.

Speaking of luck, we spent Monday night in the ER with Rhett. He is in 2nd degree heart block, which is good for the fact that he isn't in complete heart block which would be 3rd degree, that would require a pacemaker.

He's been in 1st degree since his open heart surgery, so this is a development we didn't really want, but are thankful that he doesn't need a pacemaker quite yet.

Anyhow. There is alot more to this post, but I don't really want to get into it right now. It's a post for another day.

For now, have a Happy Wednesday!

Rhett's Favorite Song From Pre-School

2009-05-31T14:02:00.000-07:00

This kid has learned so much from pre-school in the short 2 months that he went. He thrives around other kids who are more advanced than him.

Today it's Tiny Tim, Tomorrow the World.....

After all, there ain't no mountain high enough that this kid can't concur it.

What's Happened To Me?

2009-05-30T10:39:00.000-07:00

Do you remember the days when I wouldn't miss a day of blogging unless something was seriously wrong?

Yah, well, that's not the case so much anymore.

My heart just hasn't been into blogging, and I'm not sure why.

I think about a ton of things that are blog worthy in my daily life, funny things the kids say or do, stressful thing that are happening to us, milestones that the kids have hit, stupid things with Andy's job that are making me insane.

All sorts of stuff.

But when I think about sitting down on the computer and actually typing it out, I just dread it.

Blogging for me has been a sort of a release. Something to clear my muddled mind when I can't think straight.

There have been many times when I have had some tough decisions to make regarding Rhett's care, and once I lay it all out on the blog, I have been able to go back and read through it, and the answer is right there staring me in the face.

Blogging has been good.

Which is why I can't figure out why I have no desire to do it much these days.

Maybe it's just a phase, maybe it's something that I am just done with for a while....however I am leaning more towards the phase thing.

It's not really that our lives are any less stressful, I mean, things are super stressful right now. It's just that I haven't felt like sharing all of our financial issues.

I know it's weird, since I have always been brutally honest on my blog.

It's just that I don't want to sound like we are the only people in the world who have the only child with special needs, and who have lost everything they own, because we're not. There are many out there who are struggling.

Ours is just an on going battle that sometimes I wonder if there will ever be relief in sight.

Now don't get me wrong, I am not worried about not being able to handle Rhett's health issues. I know that will always be a part of our lives, and I am prepared to deal with that. But the financial stuff is bound to end, right? Please tell me it will end.

I don't want to be rich. I don't care about toys and vacations and all of those silly things.

I just want to be able to pay rent and utilities and put food on the table for our kids.

Is that too much to ask? Is that too much to get down on my knees and beg for at night?

A steady income, and a little nest egg for emergencies. That's all.

I am trying super hard not to be bitter and angry at God. But I really need this prayer answered.

I can't handle it anymore.

Andy can't handle it anymore.

It's just gone on for so long and we have tried so hard.

We are both just tired and worn out.

I almost want to end this post saying at least things can't get worse, but I think I've learned my lesson in never saying that.

So pretend you never heard that okay?

Dear My Wonderful Anonymous Friend....

2009-05-22T20:44:00.000-07:00

Generally I would delete your comment and move on, you know, just because you are not worth talking to. However IF you had read that post you would have seen that when we do these "exclusive" events as you call them they are either with Make-A-Wish or Hope Kids, which are two organizations that provide fun events not just for our child who has a life threatening illness, but for ALL of our children.

In this case it was Hope Kids that we went with.

Hint: The matching black shirts that all my kids are wearing that say Got Hope, and Hope Kids, ya we didn't just have those made up for fun.

Unless you have been living under a rock, you would realize that many celebrities love to do things for charitable organizations. Whether it be for publicity or just because they are genuinely good people who care about what families like ours goes through.

Now I didn't just go to these organiziations and say, hey!! My kid is sick I want to be part of you guys. They actually have forms that are filled out by Rhett's doctors stating that he does indeed have a life threatening illness.

That's the only reason we are able to do these things, and my dammit my kids deserve it.

Also, just thought I might want to warn you that come Tuesday there's going to be alot of Taylor Swift concert pictures and alot of talk, because we got some awesome seats to her concert.

You should also be warned that Chloee sung her heart out for those tickets, and her posing with David Osmond is because he was one of the judges of that contest. It wasn't an "exclusive event" either. The whole public was invitedm and it was all free.

Did you need me to mail you our medical bills and Andy's 500 dollar check that he just got for working 2 weeks, along with our rent, and our utilities, not to mention food, and gas too?

I sure would like to see how you can magically stretch that money to pay for everything.

And, um it's been a while since we claimed poverty in fact not until today have I been upset at our low income when Andy's check from the dealership was pretty damn close to nil.

In fact I do believe that I was upset that we lost our insurance for Rhett because Andy made too much, and that Rhett's medical supplies were so expensive.

Ya, I bitched and moaned, and picked myself up and dealt with it.

Just like we will now.

At least with this small check we should get medicaid. See, I do see the bright side of things my dear anonymous friend.

I'm not dealing with anything that a billion other parents who have children with special needs are. But, I will continue to be apart of these amazing organizations who have come together to provide some amazing activities for our family to help us deal with all the crap in our lives.

And dammit, I won't let people like you make me feel guilty for having fun with my kids.

We aren't going on big extravagant vacations, and we aren't living in a beautiful luxury home and own lots of toys and expensive cars.

If I ever have or do any of that stuff, and claim poverty, by all means slam me, because then I need it.

I love that you call me a liar, because everything that has come out of my mouth is the truth. I don't lie.

Oooh...Looky here, how did this get on my blog?

Would that be back up to the fact that we really have lost our home?

Oh no, now what's this?

Oh my goodness it's just one of the many letters stating that Rhett no longer has coverage, and we have to pay the rent on his oxygen concentrator.

That's just the letter for the concentrator...that doesn't account for all of his other medical supplies we had to pay for the last two months.

Sheesh, when you take into account all of that, even if you are making good money, once the medical supplies are paid for, which do come first before any other bills, then that doesn't leave much leeway for food, rent, utilities and gas.

So I'm just sayin, before you get all high and mighty hiding behind your sweet little computer, try getting your facts straight.

I know alot of people who are out there begging for money and have stuff all over their blogs saying how bad they need money, yet have beautiful homes expensive cars, and get a salary every month, where as our pay is based on commission and we never know how it will be from month to month.

Yes, and before you go off on Andy getting a new job, he is working on it. The auto industry is going downhill fast, and it's time to get out.

However on the other hand we are so thankful that he has had a job that he has actually been able to do since he had his back surgery. All though selling cars is high stress in other areas, it did provide him with some income while he was giving his back time to heal and strengthen.

We have sold everything we own. All we have is the nessicties that we need. We have zero debt. Not one credit card, no car payments, nothing.

We just try to survive, and our lives are so much better than when we had all the toys. We are better because we realzie that we just need each other.

And Chocolate.

A Pretty Fun Week....

2009-05-17T20:08:00.001-07:00

We got to hang out with a pretty cool guy this week.

Twice actually. Thursday and Friday.

Anyone recognize him? Here's a hint.

Ya, that's Frankie Muniz. Who is now a professional race car driver.....and a pretty dang good one at that, I might add.

He races for Team Stargate Worlds, with his partner Simona, who has been racing since she was 5 years old.

She.is.amazing.

The kids got to sit in her car, and they had a blast.

Rhett tried to pull the fire extinguisher.

Then on Saturday we went to Lagoon and Chloee was finally tall enough to ride all of the roller coasters.

Of course I had to video it.

Make an on-line slide show at www.OneTrueMedia.com

They have these little boats that have been there since I was a kid for the little kids to ride in. It's probably one of the most simple rides at Lagoon.

Rhett got kicked off of them.

He wouldn't stay out of the water and kept reaching over the side and splashing the other kids and trying to drink the water.

Ya I know. I'm raising a three year old hoodlum.

Truth be told I laughed my ass off. He did good on all of the other rides though. He loved the little whales that go up and down and in a circle. I think he rode those like 15 times.

It's been a good week.

I am so thankful for Hope Kids, who made our days with Frankie Muniz possible, and for my sister Kristie, who took us to Lagoon.

After being cooped up for the winter, it's been a really fun week full of activities.

I just wish Andy could have gone with us. I hate the car dealership. I want them to give me my husband back.

Dakota was with us at Lagoon, however he would not let me video him no matter how hard I tried. As far as the days at the race track and hanging out with Frankie, well, he had absolutely no interest in it at all, and wouldn't go with us.

Sigh.

It's hard sometimes backing off and just letting him not come when he doesn't want to go to an activity. Part of me wants to force him to go just to see if he will like it, but I've pushed him for 13 years, and it always ends up in him having a miserable time. I sure miss him when we do stuff like this though, and I really wish he didn't hate the camera so much.

But I have to respect him, and I do.

He is doing really well and just thriving in his new school. Getting almost all A's. Why? Because the teachers don't just shove him under the rug and pretend he doesn't exist.

So as hard as it is on me, and as much as I struggle every day with the choices that we have made, I know it is the right thing to do.

I just wish he was here with me more.

I hope you all had an amazing weekend, just like us.

So Much Going On....

2009-05-12T16:40:00.000-07:00

So we opted out of them admitting Rhett to have testing done. After confirming that it isn't cancer, which they won't give me a 100% no he really doesn't have it, although at this point I think it's just a CYA type of thing, I decided that we could just wait until we get insurance through Andy's work on the 1st of June.

It's pointless to rack up a huge hospital bill when we are only a couple of weeks away from being insured. It may not be the best insurance, but at least it's something. Something is always better than nothing I say.

I have decided that I am just sick of doctors. Not that I don't fully appreciate everything they do for us, and have done in the past, just that I am sick of watching my son get test after test after test. Then to add all the procedures and surgeries on top of it.

When is enough just enough, ya know?

I figure if it's not life threatening then it can wait a while. After looking at the statistics on a cord actually retethering I am also hesitant about it. I mean the odds are so few and far between.

My thoughts are that maybe his feet are the way they are because they were damaged before when his spinal cord was tethered. There was alot of tension, and they were quite surprised when they got in there, and since it's been winter and Rhett has been in shoes 98% of the time, we just haven't noticed how bad his feet really were.

He has orthotics, which I am pretty sure he has out grown by now, but we could get him some new ones, and I am sure that would help him considerably.

Can you tell I'm looking for the easy way out?

Ya, well it's because I totally am.

Regardless of when an MRI comes, he will have to have one by July as that's when he is due to have one on his brain anyways. This is to check on that Colloid Cyst that has made it's home in the third ventricle of his little melon.

So all the medical jargon aside, he did really well over the weekend till last night when he decided to give me a heart attack by his sats dropping to the 80's for a prolonged period of time.

Nothing a little Oxygen didn't cure though.

I had a great Mother's Day. We put Rhett's sand table that he got for his birthday last October together, and got him some colored sand for it. I was super excited to find out that Crayola makes colored sand. We got him some green and blue. He loves it, and I love that it fits just right on our balcony and he can go out and play in it without escaping.

Chloee loves to sit on the bathroom sink and do Roxy's hair. They are so cute together.

Rhett has been doing super at potty training. We are on day 5 of zero accidents. He still needs prompting to go pee, but will tell us when he has to poop. I LOVE this Fisher Price Frog potty. It only has two pieces, and the eyeballs come up enough so that he doesn't squirt all over the floor. It's super easy to clean, and doesn't have little nooks and crannies that soak up that pee smell.

Sunday night Rhett and Hunter fell asleep in our bed, and I thought it was so cute that they were holding hands. They are so sweet together.

So I am sure that many of you already know of the Traveling Afghan Project. But did you know that Rhett kind of started it all? Go here to CJ's Blog and read about it. CJ also sent Rhett this CUTE afghan that she made, and he slept with it all night last night. We got it yesterday and it's already been washed twice it's so loved!!

Hunter made me this cute card in school.

Chloee made me this cute little hand print butterfly.

And Rhett made me lip gloss with sprinkles!!

Dakota didn't make me anything, pfth...he's almost 14 he's soooo beyond that. ;)

Instead he gave me the greatest gift by cleaning up around the house and doing dishes without being asked. For him that is HUGE.

So, it's been crazy. Lot's going on, and Rhett is still pretty low on his oxygen saturation's today. Just something we'll watch. Probably something viral.

Again.

Frustrated......

2009-05-08T19:22:00.000-07:00

So we don't think it's cancer. That's good. His WBC is in normal range, however the dr's kind of think it should be on the high side since he still has a RAGING ear infection.

Right now we are leaning more on the side that we all kind of think his spinal cord has retethered.

Which is MUCH better than cancer.

However we don't have insurance.

To confirm the retethering we have to have an MRI. They won't do an MRI unless we pay for it up front.

His ped also wants some more tests ran, but the hospital won't do it on an outpatient basis without us payin an arm and a leg and our first born.

So we might be admitted Monday for testing inpatient.

So I have a whole weekend of sitting here worrying and worrying.

Thanks for the prayers. I know they have helped. I will update more when I know more.

Please Send Prayers Positve Thoughts, Anything.

2009-05-08T11:25:00.000-07:00

When Rhett had his fungal infection in his ear they did a blood draw. They ran a CBC, just because they always run it on him as well as a thyroid check.

The Dr. called me last week on Friday, and told me that Rhett's white blood count was a little on the low side. But nothing to alarm her. She just said that they wanted it re done in a week.

I'll admit, I thought WBC being low was actually good. It meant that he wasn't fighting some type of serious infection.

Never in my wildest dreams did I think it meant the "C" word.

The last 4 days Rhett has been falling down every time I turn around. His poor body is covered with bruises.

BIG bruises. When I called the dr today to get the order for his follow up blood draw I was just mentioning that I thought maybe Rhett was going through a growth spurt because he couldn't stay on his feet.

She paused for a second and asked if I could bring him in.

We still don't have a, I think this is cancer word out of her. But I'm not dumb. I know how to use google.

So we are headed into the Dr and for testing. Please pray that there was a mistake of some kind on that last CBC, and that Rhett's WBC is back in the normal range. This is just not something that I can go through right now.

I would love for those bruises on his knees elbows and head just to be from a growth spurt. It's what I'm counting on. I won't let myself believe anything else.

This has to be one of those, we're just covering our bases type of things. I have debated about blogging about this because I don't want to overeact, but really, I think at this point we could just use all the prayers we can get.

I'll update later.

Sweet Wee E.....

2009-05-07T15:03:00.001-07:00

Any of you that have followed us for any amount of time, know that Michelle, Elliot's momma and I have a very special relationship.

Michelle has been there for me so much throughout the last few years. She has been my rock when I needed her most. She is an amazing mother, and friend. I couldn't ask for anyone better.

Now it's my turn to support her.

Sweet Elliot has had health issues over the last year or so. He recently had his galbladder out, and had a liver biopsy done. The results from the biopsoy didn't turn out so great and him and Michelle could really use your prayers.

Michelle has pushed and pushed for something to be done, and the Dr's have ignored her even up to the point of her pediatrican telling her to find somewhere else to go. If it weren't for Michelle advocating for her son, things would still be on hold, and that scares me. You just don't mess around with a child's health. Ya know?

Please keep Michelle and Elliot in your prayers.

To read more about Elliot and his amazing mommy, please visit HERE.

Taylor Swift Here We Come!!!

2009-05-05T21:59:00.000-07:00

We played hooky today. Well, not the whole day. Rhett actually went to school, then when he got home I went and picked up Hunter and Chloee because we had somewhere to be.

Anyone recognize this guy?

That just happens to be David Osmond whom you might recognize from this season of American Idol. Ya, too bad he got thrown off just because he had a case of laryngitis, because seriously, the guy can sing, and he is so sweet too.

Anyways, I'm getting side tracked.

So, since we found out that Taylor Swift is coming to Utah, and I wasn't able to buy tickets for Chloee due to our financial situation...(yes, I did look on craiglist at the scalpers and about choked on my Coke, nothing like ripping desperate people off)...I have been trying my heart out to win some tickets on KBULL, which is a country station in our state.

I have gotten really frustrated as I can never get through on the line when they were doing like Taylor Tuba and such.

So the other day I saw on their website that they were doing a contest at one of the malls in Salt Lake today, partnering with Operation Smile. All you had to do was send in a photo of your best smile, and tell them why you and your BFF wanted to go to see Taylor.

Of course Chloee and I are BFF's for many reasons.

The catch was, that you had to be present to win. So Chloee, Hunter, Rhett, and I all went and sat around the KBULL table for 2 hours today waiting for the chance to have Chloee meet with the judges, which was one of the DJ's from KBULL, The owner of Mrs Fields Cookies, and David Osmond.

Chloee kept asking me what to say to them, and I told her just to be herself and answer their questions, show them what a true Taylor Swift fan she is. So she got a minute and a half to plead her case.

She started out by singing the first part of Love Story before even talking to them. Then she told them how her brother has been in the hospital alot, and she wants time with just mom. (I am BEAMING with pride by now, bless her heart.) she told them how old she was, and that she really loved Taylor. Then she gave them a great smile, and that was that.

So we waited a bit more, and then they gathered all of the contestants around and told us how impressed they were about all of our knowledge of an artist who hasn't been around for very long, and they said they were impressed with every one's unique story.

Then, they announced that Chloee was the winner.

She was so excited. She was jumping up and down, and you couldn't wipe that smile off of her face for anything. It was amazing.

One of the questions that the judges asked was, if we didn't win the tickets who we would choose that was in line to have them, and there were these really cute girls in front of us who were friends. Chloee really liked them, so she chose them.

However according to the judges, nearly everyone who was in line said that they would choose Chloee to win if they couldn't.

She is such an amazing little girl, and makes a huge impact on everyone she meets. I am so blessed to be her mommy.

So on May 26th, Chloee and I will be heading to see Taylor Swift in concert.

I am so proud that my little singer gets to go, she deserves it so much. Especially since the Friday after the concert is her surgery for her tonsils and adenoids.

Today was a reminder to me, that anything you set your mind to it can be done. Now I wonder if I should set my mind to winning back stage passes.

Nah. I won't be greedy. This turned out far better than I ever thought it would.

Dreams really do come true, and there is always a silver lining.

MY Vote For The Next American Idol.....

2009-05-04T18:01:00.000-07:00

She might sing a tad better if her tonsils weren't playing kissy kissy and touching each other, but she's still the cutest little singer I know.

She's scheduled for surgery at the end of this month to have those babies taken out since she is choking on anything she eats. Until then it's mashed up food in little bites for her and LOTS of milk shakes.

However before we do all that we have to have her MRI done on her neck and spine to make sure it's okay to intubate her with her head, neck, and spinal cord issues. Anyone wanna add her to their insurance policy for a while until we get our insurance?

Pretty Please?

Embarrassment 101 By Rhett.....

2009-05-03T22:53:00.000-07:00

1. When the door bell rings, and it's your Ward's Bishop stopping by to check on your family after hearing that your little one ( that would be me) has been sick again, make sure that you go running to the door with your Mommy's white lacy panties on your head, take them off, and shake them up and down at your Bishop.

(It's hilarious to see mom go bright red and grab them from you as fast as she can.)

2. When out in public and Mommy is wearing a low cut shirt, grab her shirt and pull it down as fast and as hard as you can when she least expects it, thus showing her boobies to the world.

(Daddy kinda gets after me for this one. He says they're his....but I dunno I remember a time not so long ago that I thought they were mine. Life is so confusing.)

3. If you go outside to play with the neighbor kids at the playground, when you trip on the stairs going up to the slide, just say "Ah Sh**" clear as day so that the other mommies look at your mommy like she is super naughty.

(I can get away with it because I'm cute.)

4. When mom forgets the Desitin and leaves you in the living room alone for a few seconds all nakey and such, open the door and go out onto the balcony. Tell the neighbors that are walking their dog that you have a Mimi, and proceed to stretch it out and show it to them.

(Mom was REALLY steamin at this one, cause she didn't know I could open the door all by myself.)

Now remember, these are just the few things I have done in the last couple of days. If you would like some more tutoring, please feel free to contact me.

Thank You...

2009-05-01T16:13:00.000-07:00

I just wanted to thank everyone who has commented, and who has sent private emails offering to help.

Please know that in writing that post I wasn't trying to get any help, as heaven knows we have already been so blessed in the past. I have been truly amazed at the people who have reached out to us. Not only financially but emotionally as well.

Chloee had an amazing birthday thanks to some of our great blog readers, and now we have had offeres to help us through the month of May.

For those of you that asked, here is our PO Box address.

The Bird Family
PO Box 731
Springville, UT 84663

As I said before I would much rather be on the giving end. It's hard accepting help. But we are so thankful for those of you who care about our little family.

Also, if you could please keep Rhett in your prayers, he has this fungus in his ear, and it seems to be resistant to the meds that they have been using. There is the chance that it could go to his brain, and cause some major issues, and where it is not at that point yet, we really don't even want to go there with this.

I joke that he is a moldy kid with a smelly ear, but this can potentially be dangerous.

Thanks, and we lubs you all.

Random Post in Which I Whine Alot.....

2009-04-30T21:22:00.000-07:00

Disclaimer: If you don't want to listen to a whiny 30 yr old woman then please carry on and find another blog post to read. In no way shape or form do I claim to be perfect, and we all have bad days. Today is one of mine.

So. That being said. I am super stressed. I am.sick.and.freaking.tired.of wondering how we are going to pay bills each month, because each month we get thrown a curve ball in one way or another.

It can really wear on ones nerves ya know?

The end of the month/first of the month just makes me friggin crazy.

Rhett has been sick again. He has some type of weird fungus growing in his ear. It's draining and growing white things out of it.

My kid is moldy and he stinks.

Not that I don't love him and cuddle him every chance I get, but Eww.

We got word today that Medicaid is done. Andy makes too much. But it's not that much more than the income limit.

Story of our lives. We are trying to figure out what to do since we don't have any insurance until the 1st of June. At that point we will have insurance from Andy's work, and we will qualify for a program through the state that will help pay our insurance premiums.

It's been a rough month food wise. My kids are sick of Ramen Noodles, Mac and Cheese, and Peanut Butter and Jelly sandwiches.

Quite frankly so am I.

Going two months without insurance, and all that money going to pay for needed things not only for Rhett but for Dakota as well really takes a huge chunk out of our budget, and it's not something we can put off. Just like the bills.

Rhett has been into the Dr's office 3 times this last month, and those visits are 62.00 a pop. Then you add in different meds, which are NOT cheap, along with regular meds and various medical supplies, and you get slammed. Hard.

Dakota's meds are pricey to say the least.

I have had some offers through emails that I am going to check up, as far as getting samples of Rhett's Elecare, as well as some great tips about reusing medical supplies. I wish there was a way to reuse Cavilon, the barrier that helps Rhett's tape stick to his belly. That stuff is precious here.

Thanks to those of you who have offered to help find ways to get samples and such. We are so blessed to have such an amazing support system.

Niksmom? You are my lifeline during the rough times and always have the best ideas, and we lubs you.

I know everyone is struggling right now, and I wish so bad that I could help others. I am sick of being on the receiving end. I want to be on the giving end. It always feels so much better to give than to receive ya know?

But you know what? It sure feels good to get all of it out of my head and blog about it. Somehow it makes it that much easier to deal with.

Things always work out in the end. I know we won't strike gold and become millionaires any time soon. But just as long as we are able to make the necessities I will be okay.

I'm a simple person. We're a simple family.

We don't need much. Mostly just each other.

And chocolate. Chocolate makes it all better too.

Of course Rhett would say that fruit snacks make everything better. The boy loves his fruit snacks.

Anyhow, just getting things out of my melon so I can sleep.

Tomorrow is a new day. On days like these, I like tomorrows.

The Joy's of Growing Up....

2009-04-25T21:03:00.000-07:00

Remember when you were in the 5th grade?

Well I do. Vividly.

It was the year I started wearing a bra. I actually started wearing one in the 4th grade, but I was so embarrassed that, after my mom would make sure I had it on in the mornings, I would get to school and run into the girls bathroom and take it off.

The summer between 4th and 5th I couldn't get away with that anymore so I finally bit the bullet and started wearing it.

See, here's the thing. I was a tomboy. For as long as I can remember my friends have always been boys. I hated girls. They were mean and you couldn't trust them. If you had friends that were boys all you had to worry about was who could kick the ball in kick ball the hardest. Not who was going to be your friend one day and not the next day.

I didn't have any problems like that with boys. They always had my back.

Hell, even up until I graduated high school I could out burp any guy out there.

Anyways, I am getting totally side tracked here.

The first day of 5th grade I remember getting off the bus and walking to my classroom. All of "the guys" were hanging out by the outside doors so I walked up to them and said, "Hey."

There was always the loud guy of the group, we'll call him Fred.

Fred looked at me and said, "Holy Cow!! Pam's wearing a bra!!!"

My face went flaming hot and I was so mad at my stupid boobs. How dare they come out so early.

I looked at Fred and said, "It is not a bra. It's my swimming suit!!" I then went on to explain that I had swimming lessons right after school and didn't have time to go home and change.

All of the "guys" accepted that and we all went about our normal day figuring out who was going to kick who's butt at kick ball during recess. I'm sure they all believe it to this very day. ~~ya right~~ Especially since I got on the bus after school and went home rather than having someone pick me up to take me to swimming lessons.

I'm such a freaking liar. But desperate times call for desperate measures.

Another thing that I remember around 5th grade was the whole Maturation Program.

Which is the whole reason I am writing this blog post.

The year is winding down, and it's the time of year for the 5th graders across the country to be learning all about puberty and maturing.

Now generally I check our kids back packs every day. I looked in Hunter's and never saw any type of note or anything.

So imagine my surprise when last week his teacher calls me and informs me that it's the Maturation Program that day, and asks if I will give permission for Hunter to go.

Now I totally know what that paper that went through the wash the week before in Hunter's pants, that suspiciously looked like a note from school, was.

I laughed an evil laugh inside and told his teacher that of course he could go.

See Hunter is drama. All the way from the tips of his hair down to his tippy toes. He freaks out over girls, and gets so embarrassed when you talk about anything to do with puberty.

Unless it's with Andy. Apparently him and Andy have quite the conversations.

So anyhow, I go pick up Hunter from school and this is how the conversation goes.

Me: So, Hunter, how was your day at school?

Hunter: Fine. Why?

Me: Did you do anything special? Is there anything that you would like to tell me?

Hunter: Ummmm, No. (Totally avoiding my eyes so I know he is lying)

Me: Your teacher called me this morning and asked me if I would give permission for you to go to a program.

Hunter: SHE DID? Oh.my.gosh.mom!! Why did you tell her I could go. It was the stupid maturation program. They showed us how big and hairy it's going to get!!!

Me: (I am laughing my arse off by now) Why didn't you just give dad and I the note to sign. Did you really think you were going to get out of it?

Hunter: Well, ya. I can't believe my teacher called you. That is so wrong. What's even worse was that you told her I could go.

Me: Do you think if she talked to your dad he wouldn't have made you go?

Hunter: Ummm. Hello. Do you know how cool dad is? There is no way he would have made me go.

Me: Oh Really? Why don't you text him and see what he has to say.

Hunter: (Gets out his phone and texts Andy) Oh, I guess dad would have made me go.

Me: We're rotten parents aren't we?

Hunter: Yep. Big time.

So Andy calls me a few hours later and asks me what the text is about. I started telling him all about how Hunter purposely didn't bring the note home thinking he wouldn't have to go, and that his teacher called me that morning asking if it was okay if Hunter went. By the time I finished I was in tears I was laughing so hard, and Andy was in the same position. When Andy got home we talked with Hunter about it together and we were all laughing so hard we nearly wet our pants.

Hunter is absolutely hilarious and he always keeps us laughing. He is so awesome with Rhett, and so grown up. We love his drama, and the fact that he is going to break alot of hearts some day real soon.

I know some of you are thinking that I am totally sick and demented for writing about this subject, and my answer is, it's true.

But if you have followed me on the blog, Facebook, or Twitter, well, you already know that by now. <---Insert evil mom laugh here.

I love being a parent. Man, I wouldn't trade it for anything.

Oh and an FYI? Even in my adult years I have often found it to be better to be friends with men rather than women. I have still been burned by women, the last one just about a year ago. I hate the gossipy flah de dah crap that goes on with women.

I do lubs my girlfriends that I have though. I just don't get too close to fast. It's just me. I probably have some major issues that I need to work out one of these days.

Then again? Maybe not.

Seeing The Fishy's and Touching the Butt Boat.....

2009-04-23T20:57:00.000-07:00

We've had an aquarium in our state for a while now. Not sure when it opened, but I have never been. My sister took my kids a while back, but it was while Rhett was in the hospital so he didn't get to go.

Any of you that know Rhett, know that he loves anything animal. He has no fear of them and has a pure love for anything that breathes. So I decided that today was the day him and I were going to the aquarium so he could get up close and personal with some of his buddies of the swimmy type. Of course my sister came along to help keep Rhett from becoming the swimmy type himself.

By far his favorite were the neon fish. Not sure why that surprised me. Rhett loves bright colors, which is why you see him in orange alot in his pictures. He is just a flashy kid.

Flashy with bright blue eyes.

Some of these pictures I am none to happy with, but I am posting them for the sake of his many faces that he pulled while watching hims fishy's. Like this one his hand is all blurry and it drives me bananas.

And this one the shadowing surrounding him is too dark. But it shows just how mesmerized he was with the fish, so I couldn't leave that one out.

Okay, I'll quit picking. I'll just shut up and enjoy this one.

Of course we couldn't go see some fish without him trying to lick the glass.

This was in the shark tank. He was standing there watching them, and they were pretty far back and all of the sudden one came up and swam right in front of him and headed up the glass. I think he dang near soiled himself right then and there.

After getting attacked by sharks, we went and hung out with some starfish. They're a little calmer......and smaller.

After we calmed down with the starfish we decided to get a little braver and head over to the big pool with the big fishy's.

Annnnnddd......Rhett tried to jump in with them and go "Whimming!!" Told you it was a good idea for my sister to go.

This is what he was trying to get. It's a stingray just in case you were wondering. Have you ever felt one of those things? WAY cool. It's all squishy and slimy, and gooey, and ya. We liked those.

Before we left we had to take a trip over to the big ~~butt~~ boat so Rhett could do some cruising. He finally got to touch a ~~butt~~ boat. (He loves Nemo)

At last it was time to say good bye to the fishy's and give them one last lick.

Side Note:
Yes, my child was wearing a leash, and at one point some demon of a boy looked at his parents and said,"Oh my GAWD that kid has a leash on!!" After the initial urge to run over and wash his naughty little mouth out with soap, I just smiled at him and said, "Don't worry. It's just so he won't bite you."

The dad laughed his hiney off, and the mom gave me a disgusted look and stuck her snotty nose in the air and walked away.

However it just so happens that Rhett's leash gave him the freedom of running around the building without constantly holding my hand which is like pure torture for him.

Seriously.

Stick the kid in an oven and turn it on 450 for 2 hours and he wouldn't even flinch, but ask him to hold your hand while you're walking with him and not around any cars? Well that's just cruel and unusual punishment.

He had freedom yet I had control so I wasn't running after him the whole time, and he wasn't biting little boys who have potty mouths.

'Nuff said.

History.....

2009-04-22T17:19:00.000-07:00

I have been asked recently by a few moms that are new to our blog if I would go over the history of Rhett and what he has been through thus far. I know many of you are long time readers and have been through this with us for the long haul, so just bare with me here okay?

Sure. Thanks.

Anyhow. Rhett came into the world with a bang on Oct 7, 2005. He fell out into the nurses arms and then my OB came in 5 min later. He finished delivering the placenta then went down to the ER and had a heart attack.

Seriously. I couldn't make this stuff up.

Rhett was a tiny little thing complete with Chicken Legs and all. He was 34 weeks gestation, and weighed 4lbs 14 oz. They brought him to me and as he layed in my arms tasting the air with his teeny tongue, I looked into his cute little almond shaped eyes, and knew that he had Down syndrome.

After holding him for a bit, I had a deep sense that something was wrong so I quickly handed him off to the nurse to take him down and get his bath. Andy went with him and came in around 2 am to report that nothing was wrong. However after he left Rhett started having trouble. (I figure he was just showing off for dad.)

They took him up to the NICU and started running tests on him. They found that he had an issue with his blood where he was making too many red blood cells and his blood was too thick. It was like pumping oil through his body. They had to go in and slowly take the blood out of his body, then thin it out with saline solution, and then put the thinner blood back in.

His EKG also showed that the right side of his heart was enlarged.

Long NICU story short, they discovered that not only did he have a heart condition that would require open heart surgery, but he also did indeed have Down syndrome.

No our world wasn't crushed or anything. He was too flippin cute for us not to be totally and utterly head over heels in love with him.

They told us all the bad things that could happen, Blah blah blah. He won't eat, he will struggle developmentally.

BUT they didn't tell us how awesome he would be and how much of a fighter/tornado/crazy and wild toddler he would be.

Funny how they leave out the good stuff.

Anyhow, at 4 months old Rhett had open heart surgery. He was still a peanut. Only 7lbs, and he had a rough go with the surgery. Rhett likes to write his only rules, and I think he has some little creed somewhere that states that he has to give us a heart attack at least once a year, if not more.

He actually ended up with 3 different heart defects that they didn't find out until they had him opened up in the operating room. He had a complete balanced AV Canal, PDA, and Pulmonary Stenosis. They fixed him all up as best they could, but he still struggles with his Mitral valve leaking. They weren't able to reconstruct it as well as they would have liked, so he may end up with an artificial valve in the future.

Rhett put a twist to the end of the surgery by fighting them to stay on the heart lung bypass machine. But they finally convinced him to come off of it if they promised to leave his chest open for a few days.

That would be one of those, give mom and dad a heart attack incidents.

He was in the PICU for about a month or so and then we were able to bring him home.

Things went well for the first year after his heart surgery. He was able to come off of oxygen during the day, and finally put some chunk on his little body.

Funny how a working heart will do that.

Then in January of 2007 he got really sick. We took him up to PCMC, and they found that he had a hernia where his intestines went up into his chest.

Awesome.

We took him in for surgery and he did well. They tucked him into the ICU for the night for observation and the next day we had a major incident that set us back for a while. A really long while.

But I can't talk about that for certain reasons, just know that it was a horrible incident and has affected our lives from that point on.

The rest of that year was filled with all sorts of crap from all different directions, not only health wise, but emotionally as well.

We spent time in PCMC off and on through out the year for various health issues. Mostly due to issues with his lungs due to Pulmonary Hypertension and problems resulting from the incident earlier in the year.

So 2008 came and it was to be a year filled with more hospital stays and surgeries than ever before.

In March he had surgery on his airway to take out his tonsils, part of his uvula, reconstruct his palate, and lift up some throat muscles. This surgery affected his ability to swallow thus starting our pathway to NG and G-tubes.

He was hospitalized alot throughout March, April, and May of that year. We were there more than not. In June they did a Nissen on him to stop him from refluxing. A Nissen is where they take his stomach and wrap it around his esophagus so that he can't bring anything up. Which means he can't even throw up when he is sick anymore. They also put in a g-tube through his stomach so that we could feed him. Up to this point, he had had an NG tube which went through his nose and down into his stomach.

Bet you're thinking wow!! That's enough already huh?

Well during all this time we also found out that Rhett had a tethered spinal cord. Which meant that in August he had back surgery.

He has been in the hospital off and on since then for various reasons mostly aspiration pneumonia.

We joke around here that he aspirates on air. If you know him it's true.

The kid has more scars on him from holes that they have put in him than any other kid I know.

We often tell people that if you were to put a bunch of water in him he would leak like a sponge.

I have had a crash course in medical training. I know all about lab results what is normal what isn't, I can place an NG and a G-tube on my own with no help. I routinely monitor oxygen saturation levels, and hook up feeds. I figure how many calories Rhett takes in by mouth each day, then give him the rest of what he needs at night through his G-tube. We deal with oxygen on a nightly, and sometimes daily basis. We have a suction machine, and I do constant suctioning on him, and sometimes deep suction depending on if he is sick or not. I give nebulizer treatments, and I have done chest therapy to break things up in his lungs. We do CPAP at night, although he has had sinus issues the last month, so he hasn't been on that.

I am sure there are many other things I have done, or will do in the future. It's become our new normal. I don't even think twice about it anymore.

I'll admit that it's been hard trying to balance all of our kids, and Rhett's medical needs. But we have done it, and we seem to come out on top.

Finances are a mess, and have been for a while. We lost our 5 bedroom huge home, and now are squished into a tiny 3 bedroom apartment. It just means that we can love each other more now that we are all on top of each other.

See. I know how to be positive.

I could go on and on about everything that has happened, but it would be a book.

Maybe I should write a book.

But I wouldn't change anything about our lives. We are stronger people because of the trials that we have been through. Our relationship with our kids, and mine and Andy's marriage has been strengthened beyond belief.

We appreciate the little things in life.

We have learned to laugh at things.

Like when mom gives Rhett a bad haircut and Rhett ends up with a Fo'Hawk.

That I think is pretty dang cute on him if I do say so myself.

Oh, and the no teeth thing? That's from previous head banging incidents.

Rhett thinks teeth are way over rated.

Nutt Ball.

Lost For Words.....

2009-04-21T19:30:00.001-07:00

My heart hasn't really been into blogging lately. I just don't want to and don't feel like writing. I don't know why. Just a phase probably.

But have no fear oh sweet bloggers of mine. I am going to be spending my time reading others blogs and catching up on all of you that I have been missing so much.

While I may not be writing, I am going to be posting our lives in picutres. So there will still be blog posts. Just more pictures and less writing.

I know, you are all probably on your knees saying THANK YOU GOD!!!

I couldn't agree more.

Pow Pow!!

2009-04-20T21:58:00.000-07:00

Rhett is such a boy. I don't think the kid has any type of feminine bone in his body.

When he gets older and someone tells him he needs to get in touch with his feminine side, the closest he will get is smacking a friend on the butt after a good play in sports or something.

I know. He has a disablity. He's still gonna play sports. Even if it can't be contact sports, he will play. I just know it.

So there.

A day in our house can be full of phrases that many would think are off the wall, and wondering why we teach our kids these things.

The answer is simple.

It's funny as hell.

Rhett loves to come up to you and say "Whaddup Homey!!!" He'll ask you to "Give Me Some Skin!!", and "Knuckles Dude."

He can also sing the theme songs to Signing Time, Jacks Big Music Show, Sesame Street, Sponge Bob, and iCarly. In fact Carly is one of his favorites. You know how at the end of the song they show the clips Carly, Sam, Freddie, and Spencer all rubbing their belly's?

Ya. If your not careful Rhett will lift your shirt up in public and go "Woo Woo Woo!!"

I am quite sure that there are many people who have been going about their day minding their own damn business when they have gotten a shot of my ~~stretch marky flabby~~ awesome belly.

Many may now be traumatized for life.

Ahem.

Now that I have gotten totally side tracked, and you are wondering what the Pow Pow!! title is all about, let me get right to that.

See Hunter and Rhett play alot. Hunter is 10 going on 18, so he teaches Rhett alot of things. Some good and some not so good. Right now they are into guns.

I know. My 3 year old is playing guns with my 10 year old, condemn me now.

Anyhow, Hunter has taught Rhett to say "Pow Pow!!" When he is shooting a gun. ~~or anything that looks like a gun for that matter~~. So when Rhett shoots Hunter, Hunter rolls his eyes in the back of this head and falls to the ground, sticks his tounge out and says, "BLEH!!!"

Recently Rhett has decided that he can play dead just as well, so Hunter has been shooting him, and Rhett has been awesome at playing dead. He does it just as well if not more dramatic than Hunter does.

Heh. Forget sports, maybe acting is in Rhett's future.....

But seriously you should see it. It's hilarious. These kids are so freaking funny together and the bond they have is amazing.

Of course this whole playing dead thing has lead to certian issues, like at my Grandma's funeral someone was telling one of their kids that Grandma H had died, and Rhett signed Grandma and fell to the floor, lolled his tounge out and said "BLEH".

Somehow I think Grandma was laughing at how funny Rhett is and telling everyone how impressed she is with how well he has done thus far in life.

Granted I am also super thankful that nobody but Andy, my sister, my mom, and I were the only ones who knew what he was doing.

Lesson Learned on that one, and of course Andy and I didn't come home and laugh till our guts hurt about it either.

Even in the toughest situations our family has learned that humor is a great way to get through things.

We laugh alot around here.

Anyhow. I know I have been slacking on my blogging. You can all beat me over the head. I don't know why but my heart hasn't been into it lately. I think I have just needed a break to regroup who I am now that my life isn't revolving 24/7 around Rhett.

I don't want to say I am getting comftroable with everything, because when I do that something generally happens.

But you know, things have been good. Much better than the last three years. The past few weeks Rhett has had some type of a cold or virus or whatever, and last year at this time he would have been in the hospital. However this year he seems to kick them pretty good. He's had Rotovirus, Pink Eye, a Sinus Infection, and Bronchitis. But he has done amazingly well.

I'll admit there were a few times I wondered if I should take him to the ER, but we only needed to go get loaded up on fluids to make it through another week or so of diarreha.

I am super impressed at how well his little body is kicking some serious butt at all of these illnesses.

I know it's silly to say I am proud of his little body, but it's true I am. He is an amazing kid with an amazing will to live. We each one of our kids, and are so blessed to have them in our lives.

Andy and I must have been some pretty boring people till these miracles were sent to us.

Upside Down and All Around...

2009-04-15T20:40:00.001-07:00

The last few weeks have been full.

Full of happiness, full of tears, full of grief, full of worry, full of pride, full of joy.

I have found myself some days wondering which way is up and which way is down. The days are flying by and the moments of our lives are passing too quickly.

Chloee has been filled with alot of questions about Grandma Hjorth, and how we know that she is in heaven. Sometimes I find it hard to explain. She asked me what Faith is. I told her that its when we can't see something but we know it is there.

As usual her words of wisdom caught me off guard. "Oh, so like when Rhett was in the hospital and we thought he might die, but we knew that he would be okay."

She has endured more than any other 7 yr old should ever have to endure. She is very wise, and sometimes I think she understands more than I will ever know.

I have debated on posting this photo, as a funeral is a very private affair, however this is a happy and peaceful picture to me, as Chloee said her last good-bye to her Grandma. After she was done, she looked at me and said, "Mommy she's happy. She's okay."

My Chloee and my Grandma had such a special bond. I'm glad that Chloee is at peace with everything.

The days leading up to my Grandma's death were very hard. I keep thinking back to the conversation that we had. For many days before she passed she was in and out of it so much. Mostly out of it. She was very ill and really didn't know who was coming or going.

However the Thursday that I went in she was very well coherent, and even sat up and put her glasses on. Our conversation was one of the most amazing and yet private conversations that I had ever had with her. Of course I won't tell all of the details here as they are so very special to me and not meant to be shared.

But she was able to tell me how proud she was of me. How I was an example to her, and how after seeing me with my children she wished she would have done more for her children as they were growing up.

What an honor for her to day that. I have always looked up to my grandma, and have held her on a pedestal. They way she kept her house so clean, the way she has always been there for my mom when there was no one else. My grandma played a huge part in the person I am today. It feels good knowing that she is in a better place, and she won't have to worry about anyone catching her in her "bed clothes" again. She was so funny that way. Oh how I love her and miss her.

Even though I have been coming to terms with our loss, there have been enjoying some fun times as a family.

I have come to realize that Hunter is a teenager now. Even if he is only 10. He is growing like a weed and I can't keep him in his clothes or shoes for that matter. He is eating us out of house and home, and has that wonderful mouthy attitude that only a teenager can have, and that only a mother can love.

He has lost his little boy look, and is growing so fast. I find that sometimes my heart aches for the cuddles and hugs that we used to share. He has always been such an amazing kid.

Dakota is still doing well for the most part. He is having some issues with learning how to tell if something has been done to him intentionally or on accident especially during PE at school. He sees things so different than most and we are working with him to help him function better.

I can't imagine what it is like living in his world. If only I could make things better.

He's still a turkey and doesn't like his picture taken. I have to really sneak up on him, and 90% of the time I don't get his face. He is growing up as well, and is nearly 14. Oh my how time flies.

We were able to spend Easter over at my Mother In Laws house. She has been such a huge blessing to our family. I think she has done Easter for our kids every year since Rhett has been born. Last year she was able to throw it all together on a moments notice as Rhett and I found ourselves admitted to the hospital for the umpteenth time that year.

This year was different though. This year he got to go on the Easter Egg Hunt, and he got to find his own eggs.

He was excited when he found a bag of Malted Milk Balls. He loves these things.

He was also excited to see his Easter Basket and all of the goodies in it. Of course the favorite was his bubbles. The boy loves bubbles.

Chloee was very protective of her eggs and this is the look she wore most of the time. She has learned how to defend herself in a house full of brothers quite well.

After eating brunch we all walked down to the school and the boys, which included Andy, Hunter, Grandpa, Uncle Mychal, and Grumpy, played basket ball for a while.

I ended up cutting out early and taking Rhett home. He had jumped into a few muddy puddles and I thought he was just wet and cold.

Heh. Wishful thinking.

His crabbiness lasted throughout the day and by that night he had a fever and some pretty nasty poop going on. As the days have gone on he has gotten progressively worse, with today being a nightmare for all of us.

He has been crying alot and doubling over in pain saying "Mommy help me!!"

I am not sure what is going on, other than he has some nasty bug that is just really hanging on to him like crazy. He's having trouble sleeping and we have gone through more diapers than I can count. His bum is one big fat open sore, even though I change him as soon as he poops and have been putting a barrier cream on it with each diaper change.

Of course Murphy's law at the Bird house is that he will get sick during the month that we don't have insurance.

Oh how I long for the day when our income doesn't matter and he is insured no matter what. It's such a roller coaster with all of these insurance issues.

We'll get through it. We always do, and somehow or another we end up on our feet.

We do have two new family members though.

Meet Roxy:

And Mitzy:

Long story that I will share another day. Just know that these two puppies are exactly what Rhett has needed and his head banging has nearly come to a stop again, and he is sleeping through the night. We are working on getting Roxy certified to be his service dog as she has helped him so much. Most service dogs are big dogs, but never underestimate the power of love in a tiny little body.

My Brain Hurts....

2009-04-10T22:55:00.000-07:00

So if you haven't noticed, it's been a while since I posted. Not like me, but I'll be honest. I'm tired.

It's been a really long and emotional week. There was alot to do to get ready for the funeral, like buying clothes. My kids have all grown so much their church clothes just no longer fit. I was excited to find some cute things in The Children's Place at the mall.

Chloee looked absoutley beautiful in her pink dress with polk a dots, and Rhett and Hunter looked so handsome in their orange shirts and sweater vests. Dakota has grown so much. We actually ended up getting him clothes in the mens section which made him look like a young man rather than my little boy. He is taller than I am.

It's amazing how fast our children grow. I sat and watched them today, thinking that I have missed so much of their childhood. Just being busy with life in general, and thinking that I need to step back and slow down. Take it all in, because I don't ever want to forget how my children feel in my arms, or the feeling of pure sweet joy that I get when they call me mommy.

I want to remember everything about this chapter in our lives.

My grandma's funeral was beautiful. She was happy and peaceful. You could just feel it everywhere around you. She is where she needs to be now. Her poor body was so frail and so worn out. Now she is free from it all. She is healed from her heart problems and her skin issues. She doesn't have to throw up anymore. My heart just broke the last few months as she couldn't keep anything down. She was so tired.

I know that she is with my grandpa again. She is with her son who passed away 2 years ago, and she is with her twin sister whom she loved so much. I will miss her, my kids will miss her. They all had such a special bond.

I am tired too. But just emotionally. It will get better, and although there will forever be a void in my heart, I know that this is the way things are supposed to be. I know that I will see her again some day.

Saying Good Bye, a Birthday, and No Insurance....AGAIN.

2009-04-06T18:12:00.001-07:00

Have I ever mentioned how bad I hate Mondays?

Cause I do.

Especially this week.

Today we lost my grandma. I'll be honest. It hurts. Alot.

My grandma was there for me when my mom had to be at work to provide for us kids. She would pick me up everyday after school all through elementray and and middle school.

We would sneak to Mcdonalds without my grandpa knowing and she would get a Hamburger, no pickles, and I would get a Happy Meal. Everytime on the way home she would say, "Now Remember, Grandpa doesn't need to know about this."

I would just giggle and zip my lips and throw away the key.

The last three years I haven't been able to be there for her as much as I wanted to. I know she has been going downhill, but let's face it, when you pretty much live at Primary Children's Hospital for those three years you kind of loose touch with alot of your family members.

My life the last three years has been centered on keeping Rhett with us.

Of course we would always pick up the phone and call each other. We'd laugh about how much Andy and my Grandpa were alike, and how they drove us crazy sometimes, but we just can't help but love them.

My grandma played a big part in who I am today.

This is the last time my family was able to be with her together.

Thanksgiving Day 2008

It's been a rough day. Every once in a while a memory will come on strong, and it hurts to breathe.

I know she is in a better place. She's had a beautiful reunion with my grandpa, and my uncle, as well as her twin sister who she loved so much.

Still doesn't mean that I don't hurt knowing that I can no longer touch her sweet fragile skin, nor smell her smell. Things that I never want to forget.

What an amazing woman she was, and how much she will be missed.

-----------------------------------------------------

Tomorrow is Chloee's Birthday. She is going to be 7.

Yeah, I know she is growing up so fast. My only little girl.

The one who holds me when I cry in a house full of testosterone. The one who shares my love of shoes, my love of shopping, and my love of all things pink.

We wanted to do something special for her for her birthday, and had planned on getting her tickets to Taylor Swift.

The girl eats sleeps and breathes Taylor. She knows every word to every song Taylor has ever sang.

I thought it would be a great way to spend some one on one time with my little girl who has fought some of her own battles, and been put through so much with her little brother.

However, we found out today that Rhett lost his insurance again, and whaddya know, we have to use the money for medical supplies for this month.

Don't get me wrong. I am so thankful that we have the money to spend for Rhett's supplies. It could be so much worse. It has been so much worse.

I think I'm more dissapointed than Chloee will be about the whole concert thing. She will be happy with just a birthday cake and knowing that she gets to spend the day with us.

I'll decorate the house for her and make a special dinner. Andy has the day off, so knowing that her Daddy will be here will be exactly what she wants.

Remember? This is the little girl who told Santa that all she wanted for Christmas was for her family to have the best Christmas ever.

She gets what life is about. More than most kids her age.

She is so beautiful, and I am so happy I have such an amazing little girl.

--------------------------------------------------

So the whole no insurance thing.

It should be just temporary. Andy just made a little too much, so we didn't qualify.

We are on the waiting list for DSPD, which once Rhett gets on that, the insurance will go by the fact that he has a disability, not by our income.

That day can't come soon enough I tell ya.

If it's one thing I have learned, it's been that things always work out in the end.

No matter how much we worry and how much we stress, it isn't going to change how things are.

--------------------------------------------

Andy and I also celebrated our 11 yr anniversary yesterday. We stayed home and were sick together.

We are Par-tay animals I tell ya.

Either that or we have just come to realize that no matter what you do to celebrate, as long as you are together, that is truly all that matters.

New Me..and More Snot...

2009-04-04T21:31:00.000-07:00

I haven't updated in a few days. Nothing new going on. Rhett was super sick for a while, he missed school all last week. Thought we might end up at PCMC but because I am such an awesome mom ~~Puhleeze~~ we were able to keep him home.

One of those times when I am kind of glad that I have had a crash course in the medical field I guess. Lord knows we don't need to be at the hospital exposing the little goober to more cooties.

Now Chloee has the crud, and so do I. We both feel like poo. Chloee has a pretty nasty fever that spiked about 5 am this morning. Everytime the Motrin wears off it gets really high again. She's been delerious, and ~~I think it's hilarious~~ it's sad that she keeps asking for Taylor School Musical, which is a mix of Taylor Swift and High School Musical. Her two very favorite things.

So far Hunter and Dakota haven't gotten sick which is good because they can chase after Rhett while I lay on the couch and ~~pretend they don't exisit~~ sleep.

This hit me this morning. I was fine last night but woke up with my nose and snot feeling hot. You know that feeling? It's that feeling of aww crap...I really don't have time for this.

I'm hungry but nothing sounds good since I can't taste anything.

Sheesh I'm whiney when I'm sick huh?

Anyways, like I said nothing going on.

I did change my look yesterday though. New glasses and a new hairdo is cause for a picture right?

Promise not to laugh?

Cause if you do I'll cry. It's not nice to pick on sick people ya know.

There. Now you all know what I look like. Was it just like you imagined?

Wow...I need to go to bed now.....

Night.

Rhett's Stompin Grounds....

2009-04-01T17:41:00.001-07:00

Ever wonder where Rhett hangs out all day? I thought we would give you a tour. He has two rooms that he plays in since we all squished into this three bedroom condo. I actually have to keep him out of his room because all of his medical equipment is in there.

Rhett + Medical Equipment = Naughty

Like today? He ate, not just chewed, but ate his sensor for his oxygen saturation monitor.

You know, just in case you were wondering what little Rhett Bird's are made out of.

Seriously. I couldn't make this stuff up.

Rhett's favorite place to hang out is in the living room. That's where his TV is, and where we watch oodles and oodles of Signing Time, Spongebob, iCarly, and CSI.

Okay, so maybe I watch CSI when Rhett takes a nap. But all of the other shows are Rhett's favorites. Especially iCarly. He can totally sing the theme song, well, actually he can sing all of the theme songs, but iCarly is the fav right now.

I'm getting side tracked here. On to the photos...

This is the living room where his TV and slide are. The shelf above the slide holds his Make A Wish box that has his special key to the wishing room inside it, as well as the wishes that our family have written down for him. There is also, the saying Live Laugh and Love, written on some blocks, and above that is the word Believe. The star hanging on the wall says Believe on it was well. The pictures off to the side of the shelf are of Rhett when he was in the NICU, as well as a picture of him the day he came home, lying next to our cordless phone. Ya, he was the size of a phone.

Next is the other side of the living room looking into the kitchen. The blocks on the wall say Faith, and the picture above the arch is of Rhett the day before he had his open heart surgery. The pictures below the Faith blocks are some of my favorites of all of our little baby birds...that really aren't baby birds anymore...In the archway itself is another Believe saying, as well as one that says, Faith, Hope, and Pray. The Winnie The Pooh was a gift to me from one of my High School teachers when Dakota was born. We all LOVE that Winnie The Pooh. He's one of us.

This is where the recliners and love seat are. Some of Rhett's toys live behind the recliner. On the wall is an iron heart hanging from a red ribbon to represent the strength of Rhett's heart since being repaired over 2 years ago. On the black shelf with the star is another Believe sign, and then a picture of Chloee, and above that is the word Faith again.

This is where Rhett's trike hangs out. He doesn't get to ride it too often outside, so he mostly rides it in the house. Andy's deer is hanging on the wall, as well as his Buffalo drawing, and his clock on the wall that has panda bears on it. Andy's nick name is Anda Panda Green Bear Bird. So Panda Bears are kind of his thing. Then there is our key rack which says Live A Good Life. This is our reminder as we walk out the door to remember to live each day to it's fullest.

This is the kitchen, which is where our little turkey likes to pull things out of drawers and throw things in the sink. He also likes to eat in there for some reason....haven't quite figured that one out yet....Notice no chairs around the kitchen table? That's so he can't get up there and do a table dance. They are all stacked away in the corner.

This is another shot of the kitchen, with emphasis on the oven. Rhett loves to look in the glass and pull faces. Then he will get right up to it and say, "Ittle Boy!! Are you???" Which means that he wants to know where the little boy is in the glass. He hasn't quite caught on that it's him in there. But don't tell him, because it might just break his heart that he doesn't have a friend.

Okay, and last but not least, here is the little dude last week as I went in to put his oxygen on him. Hims sleeps in a big boy bed now, and he doesn't even fall out on his melon. Hunter and him share a room and he sleeps on the bottom bunk. Sigh. He's growing up.

Our family motto has been Faith and Believe and Faith since Rhett was born. We have all sorts of reminders all over the house to remind us that we have a little miracle living amongst us.

Of course the Believe motto also helps me to remember to believe in my kids...~~like I believe that one day my kids will eventually learn how to clean up after themselves.~~

Cause sometimes on those really bad days, I need a kick in the butt to remember that everything I am doing I am doing for a reason. I want my kids to know that they can be anything they want to be, and that we are here behind them 110%.

I believe that everything happens for a reason, and that we chose this life before we came to this earth. We didn't come into it blind. I am so thankful for all of the little miracles in my life.

Glow In The Dark Snot Anyone?

2009-03-30T22:14:00.000-07:00

Hopefully you weren't eating when you read that title, but truth be told that's what Rhett and I are wearing right now.

Rhett's sick. He's got green creepy crawly crap coming out of his nose his eyes, and his throat. His lungs sound yucky, and he's just plain miserable.

He has been bathing both of us in snot all day. I have suctioned him to no end and it doesn't help but for an hour or so. During that hour he is sleeping, but yet tossing and turning at the same time.

I hate it when he's like this. Generally for most people snot isn't too terribly scary, but Rhett likes to aspirate his, and well....I'm not too keen on the idea that he will more than likely end up with pneumonia.

Today has been a day of me pacing the floor, holding his little hands, and rubbing his feet. We have read his favorite book 'Hand Hand Finger Thumb' about 15 bajillion times. I have tried to read other ones but he just grabs them out of my hands and throws them on the floor. Then he gets off my lap and goes into his bedroom and gets his Jack book. (Hello Jack ,Hello Jake, shake hands, shake hands, shake, shake, shake!) I'm going to be dreaming of monkey's tonight.

Tonight as I sit and type, the hum and the little puffs from the oxygen concentrator fill my ears. He's getting more oxygen than normal, so the puffs come faster than they usually do. The pulse ox keeps beeping whenever he turns onto his back, because his nose fills up and his oxygen levels drop. I listen to him cough and gasp, as he realizes that he has to breath through his mouth. More than likely I will sleep in the recliner with him tonight so that he can be propped up.

He missed school today.

It made him sad. He knew he was supposed to go. He kept going to my bedroom window and watching for the bus. He'd put his pudgy little hands on the window and ask me when his bus was coming.

Colds for so many kids are just colds. But for us? It always leaves us wondering if it's going to turn into something more. Something that is going to land us in the hospital again.

For now we will just sit and wait it out, watching him carefully and loving on him every minute of the day.

Little Giggle Gut.....

2009-03-28T22:10:00.000-07:00

You know, most parents would flip out when walking into a room only to see your 6 yr old and 3 yr old throwing a package of diapers around.

However, I've learned to enjoy the little things in life, and this belly laugh is something that I can never get enough of.

(Don't mind the boxes, I was unpacking the last little tid bits of our room, which I am now done with. YAY!!)

So for those of you that are demanding more Rhett videos?

~~Shut Up.~~

Here you go!

Prayer Request.....

2009-03-28T10:47:00.000-07:00

My cousin has a 7 yr old little boy who is extremely sick right now. On Thursday he saw the Dr and was Dx'd with strep and influenza. That night they took him back to the hospital and found that he had pneumonia. His little lungs were so full that they life flighted him up to PCMC.

He has been in the ICU up there, they have done a chest tube, and he had surgery this morning to retract the fluid off of his lung that had collapsed. He is also septic, and is having a really rough time. As of right now both lungs have fluid in them and they have been told that he might not make it.

PLEASE keep this family in your prayers. Please wrap little Alex in your prayers as well , as his little body fights off this infection.

I know that your prayers, as well as the love of our Heavenly Father have helped to work miracles. Rhett is living proof of that.

Alex is the same age as Chloee, and it just breaks my heart thinking about it. I know all to well the feelings of the unknown. It just plain sucks, and it's not fair.

Drum Roll......

2009-03-27T18:42:00.000-07:00

Okay, I know that all of you have been dying for this, so here it is.

The winner of the FLIP Video Camera, chosen by Random.org is....Carey from DREAM BIG!!

The winner of the See Kai Run shoes, is Brynn, from JOINED BY OUR HEART STRINGS!!

The winner for the Toy Wrangler. is Dawn, Ali Rae, Our Crazy Life, James and Summer, and Becky!!

Congrats, and I have some exciting stuff to give away next week, so don't go away!!

Hope you all have a great weekend!!

Head Shoulders Knees and Toes.....

2009-03-26T21:13:00.000-07:00

Okay all of you people who have been bugging me....and you totally know who you are. Don't sit there at your computer screen looking all innocent.

Sheesh.

Here is the long awaited video of Rhett. Pay no attention to the crazy lady singing in the background.

See. Proof to his teachers that he really does talk, and know his body parts. One day he'll open up at school.

So whadd'ya think? Wanna squeeze him?

What's Wrong With This Picture?

2009-03-25T21:18:00.000-07:00

This week in pre-school they are starting a unit on firemen. This should be good for Rhett since he loves fire trucks and police cars. After his trip in the ambulance up to Primary's a few weeks ago, he's not too keen on those though.

Today he came home from school with this picture......

Did you notice anything wrong with it?

Like maybe the little girl lying underneath the fire truck?

I wonder what that naughty little girl did to deserve being run over by a fire truck anyways?

I asked him to tell me about the picture, and he showed me the one eared dog. When I asked him where the doggy's ear went he told me he ate it. Sigh. Guess that's what I get for asking.

Only my kid would put an innocent little girl under a fire truck, and eat a dogs ear.

And, last but not least here are 2 out of my 4 favoritest guys in the world.....

Sometimes Things Don't Always Go As Planned.....

2009-03-25T12:16:00.000-07:00

I have debated over writing this post or not for a while now. I guess for fear that I will be judged, and I have had a hard enough time dealing with it as it is, so I guess I have felt like I wouldn't be able to handle the judgement that was sure to come.

So I ask those of you who read this, to not judge until you have walked in our shoes, and know what it's like to have a child with an emotional and mental disorder.

Many of you know how we have struggled with Dakota and his issues. We have been doing alot of testing, and working on getting a DX for him, since we know that there is more going on than just simple Asperger syndrome. After some extensive tests we have found that not only does he have Asperger syndrome, but he also is Bi-polar, has Klinefelter syndrome, and has issues with his central auditory processing in his brain.

It's been hard dealing with everything. I mean, just the fact that he has so many things going on, when on the outside he looks so perfect.

Dakota has always kept to himself. He doesn't like doing things together with the family, and now we know why. Because he simply can't handle it. He can't deal with the confusion of three other kids running around, being loud, and playing. He can't deal with sitting down and having a family dinner and the sound of six peoples forks scraping on plates. It literally drives him crazy.

It breaks my heart to know what he has been going through for the past 13 years. It's no wonder he couldn't stand being passed around as a baby, and would only let me or my mom or sister hold him.

I can't imagaine what life has been like for him.

So when things started going down hill at his current school, and he wasn't getting the help that he needs, he had kids sexually harrassing him, and the school chose to turn their heads, I knew that I had to do something.

I met with his therapist, and discussed something that I never thought I would be able to do, but knowing that it would be best for Dakota, decided that I had to do it.

When we lived in our previous town, the Jr. High that Dakota went to was amazing. He thrived there, and got straight A grades. They worked with him, and knew his needs. They bent over backwards to help him succeed. This should be done for any child with special needs, and you shouldn't have to fight for it to happen.

So anyways, after much debating, and talking with therapists, Dakota, Andy, my Mom, and my Sister, we decided that it would be best for Dakota to move in with my mom so that he could go to his old school. Not only that, but living with my mom helps him so that he isn't always in the chaos of a large family.

This has been the hardest thing that I have ever done. I feel like I have failed as a mom. His therapists keep commending me for doing what's best for Dakota, and not being selfish, but I still am having such a hard time with this.

He is only 10 min away from us, and he comes home on the weekends, or whenever he doesn't have school, and I love it when he is here. I miss him so much, so do the other kids and Andy.

But Dakota is happy. He is doing so well, and is thriving with my mom and my sister. He is in a house of adults, and that is who he gets along with. He is doing amazingly well in school, and he is making headway in his therapy where as before he seemed to be stuck.

We have even been able to back off on some of his medications.

I never planned for this to happen. I didn't want it to happen.

Maybe it won't be permanent, maybe it will, I don't know. We just have to take things one day at a time.

Our only other option was to send him to a group home, and I just couldn't do that to him. We are so blessed that my mom and sister were willing to take him in and work with him. Not many families have that option.

Dakota is no longer a danger to himself, or our other children. He is happy, and no matter how awful I feel inside, and how hard this is on me, the only thing that matters is that he is thriving.

Still doesn't mean that I don't miss him.

Could It Be?

2009-03-23T23:56:00.000-07:00

I'm not quite sure why, but I have had writers block lately. It seems like there isn't much going on these days.

Well you know, other than sitting here listening to my husband switch back and forth between Ultimate Combat Fighting, and some silly western movie on TV.

Seriously~This is my life people.

I remember writing a post a while back on Rhett's previous blog about how I longed for a boring life. A life filled with no drama, no major health issues, no hospital trips in the middle of the night, you know, kind of a normal life.

Well it seems that I have gotten my wish. <----Totally knocking on wood here.

Things are good. They are settling down, and we are getting back into a regular rhythm again.

I get up in the morning, feed the kids, send them off to school, get Andy off to work, and then I go about my day doing normal person things until the kids come home from school.

I know. It sounds so funny that I say normal person things, but you have to remember that for the last three years I have been given a crash course on health care that I really didn't plan on taking.

I mean, ya, I still have to suction, give meds, change dressings, mix up feeds, hook up the feeding pump, monitor oxygen saturation's, put oxygen on my favorite little three year old at night, and calculate calories, and all that jazz. But see, that's normal for me now. It's part of who I am. Who Rhett is, who our whole family is.

It's normal for Rhett to have a bath every night, and for Hunter to sit down with him and play patty cake or the itsy bitsy spider while I put Rhett's dressing around his G-tube site.

It's normal for Chloee to sit on the counter and read to me while I'll figure out how much Rhett has eaten orally for the day, subtract that from what he needs, and supplement him with his formula at night through his feeding tube.

It's just a typical night in our house to listen to the steady hum of the oxygen concentrator as we sleep. It's become soothing and peaceful in a way. A security of sorts, knowing that our little buddah is sleeping in his bed, and that his oxygen helps his heart relax.

I mean, this kid is kicking some serious Pulmonary Hypertension butt here.

So although some would think that we are still in the midst of craziness when they look at our floating ER of a house, well, for us it's life. It's how things are. It's normal.

I am super happy with the way things are going.

Things are boring, and I like that. It's nice not to have an elephant sitting on my chest, and a knot in my stomach, all the while wondering what is coming next.

We haven't been out doing anything exciting, but we are loving every minute of sitting at home being a family. I can't think of anything else I would rather do.

So sorry for not posting exciting things, we aren't doing anything exciting.....and I love it.

Wee Steps Review and Give Away...

2009-03-22T23:02:00.001-07:00

Okay, so I admit it, I am totally obsessed with shoes. It's not just a small obsession, no, it's HUGE.

I have so many shoes it's ridiculous. So do my kids. Chloee and Rhett share my shoe obsession too. We all have shoes that go with every outfit.

But my favorites for Rhett are these shoes......

I first became addicted to these while on a quest to find something that Rhett could not take off of his feet. He hates shoes, and refuses to wear them the majority of the time. But I also found that I could put them on at night when he has his pulse ox monitor on, and he can't take his probe off.

So needless to say I was beyond thrilled when the wonderful folks at Wee Steps offered to let us review their shoes. Of course since we are huge softball fanatics, and play every chance we get, we picked the Grand Slam design, and since Rhett's nickname is Tad Pole, we chose the Olive Green Froggy's.

Rhett loves both of these shoes, and he wears them whenever we are in the house, as well as when we go to pick up the older kids from school. It's so nice to have a set of slippers to walk around the house in, especially during the colder months, that he can't pull off.

No more lost socks in the grocery store, or stuffed in the couch cushions. LOVE it.

Of course since the folks at Wee Steps are SO awesome, they have offered to give away a pair of their adorable little shoes to one of our lucky readers.

To enter, just head on over to their site, which is located HERE, and come back here, leave me a comment with your favorite shoe design, and your email address and wa-la! You are entered.

Of course you can also gain extra entries by....

1. Follow this blog

2. Follow me on Twitter (mom2rhett)

3. Blog or tweet about this giveaway.

Please remember to leave a comment for each entry.

This give away is open until March 31 at 5 pm MST.

First Parent Teacher Conference.....

2009-03-20T10:16:00.000-07:00

Rhett has been in school for about three weeks now. I know it's not very long, especially considering him and I have been joined at the hip since birth. He hasn't been anywhere by himself before. I'm sure school is scary and different to him.

So why am I surprised that he doesn't talk in school?

Truth be told, I never even thought about the fact that he would shut down in the classroom. I mean, here at home he talks non stop. Not just a word here or there, but full blown sentences. When he needs something, he tells me he needs it. If he needs help, he comes to me and says "Mommy 'mere, HELP!!!"

But apparently in the classroom setting he signs alot, but isn't to interested in talking. Nor is he really all that interested in playing with the other kids.

Which is fine, I mean he is at least a head smaller than the rest of his class, and is quite a bit behind compared to a typical three year old. He will go up and see what they are playing, and the kids try to include him, but in the end he would rather just play on his own.

Again this surprises me because here at home he is always right in the middle of anything that his siblings are doing.

He also won't pass off his body parts, which I know he knows. We have worked on them for months, and here he does it all the time, even without prompting.

So my question to you, my dear blog readers, is this:

What was pre-school like for your child with special needs when they first started? Did it take them a while to get used to it?

Why do you think Rhett is in a shell at school?

I know he likes school. He gets super excited whenever we talk about it, and he loves getting on the bus. He loves his teacher as well. That was apparent last night.

I just want him to be at his full potential at school. Am I pushing too hard?

Maybe I expect too much out of him after all he has been through.

Come on bloggy friends. Lay your advice on me.

FLIP Video Review and Give Away!!

2009-03-19T23:20:00.000-07:00

THIS GIVEAWAY IS NOW CLOSED

Okay, I know you have all been waiting for this one for a while, aaannnddd, here it is!!

We recently received a FLIP Video camera for review. I have never really owned a video camera other than the one on my camera, which takes pretty crappy videos.

So I was excited to get this one, but at the same time was worried how long it would take me to learn how to use it.

However-I need not worry my friends. This thing was so easy to use. Even Hunter and Chloee figured it out quickly. Granted they are more tech savvy than I am.

We have really needed this video camera in our lives. There have been so many things that I would have loved to show Andy and the kids while Rhett and I were hanging out in the hospital, like when Rhett was there for his birthday, and he had his cupcake and blew out his candle for the first time.

What I really loved is that there are no extra cords or anything to pack with you. All I have to do is flip out the port, and hook it onto the laptop. And there you have it, all ready to download. It was awesome.

I am a huge fan of FLIP, and already we have many videos of some firsts with Rhett that we would not have captured had the folks at FLIP not been so amazing. They have also donated a camera for you to win!

Now here is your chance....

Go to the FLIP website, which would be HERE, and tell me your favorite feature or color. Come back and leave a comment with your email.

Of course there are extra ways to win. Remember to leave a comment for each entry.

1. Follow this blog.

2. Follow me on Twitter

3. Write a post on your blog about this awesome giveaway.

4. Tweet about it.

That's it!! Contest is open until March 27th at 6 pm.

Good Luck!

See Kai Run Give Away!!

2009-03-19T23:02:00.000-07:00

THIS GIVEAWAY IS NOW CLOSED

We recently had the chance to review some awesome sandals from See Kai Run. Can I just tell you how much I LOVE these shoes? They are super flexible and they bend really well so that Rhett doesn't have to pick up his feet so much.

Even after his tethered cord release he still struggles with dragging his right foot. So we are all about flexible here.

But the best thing is, is that they are sturdy enough for him to run outside in.

Seriously. LOVE them.

Of course we wouldn't tell you how great these are without offering you a chance to get a pair for your very own.

See Kai Run has graciously offered a pair of shoes to one lucky reader.

All you have to do is go to their website, which would be HERE, and pick a pair of shoes that you would choose if you won. It needs to be from the See Kai Run, or the Smaller shoes, not from Eleven.

Come back here and leave a comment telling me which ones you like, and don't forget to leave your Email address.

There are a few more ways to win.

1. Follow this blog, leave a separate comment telling me you follow.

2. Follow me on Twitter, (mom2rhett) again leave me a comment.

3. Post about our giveaway on your blog, and/or tweet it and leave a comment with the link.

Good Luck!! This give away ends on March 27th at 6pm.

Random Ramblings.....

2009-03-17T21:16:00.000-07:00

Fine. I admit it.

I have been neglecting the blog world. Not just my wonderful friends and your blogs, but my own blog as well.

Life is busy. I am busy. I have been doing some soul searching and trying to figure out who I am now that my life doesn't revolve around taking care of a sick child 24/7.

The last 3 years it seems that I have forgotten someone important.

Me.

Of course I wouldn't trade it for anything. I mean, where would Rhett be today had I not quit my full time job to be his mommy/nurse. I threw myself into making sure that he has the very best life that he can, and that included many surgeries and hospital stays to get to where he is now.

But he is soaring higher than I ever thought possible.

When he was first born I was told by many specialists that he would do most of his learning in the first 8 years of his life, and then he would start to taper off a bit, and won't learn so rapidly. I was also told that during those 8 years, that the first 3 were the most important to his learning and development.

I have often felt that we have lost precious learning time due to so many health issues. I had in my mind these visions of sitting with him spending one on one time going over letters of the alphabet, learning colors, and maybe even working on reading.

I don't think I ever envisioned his first 3 years fighting for his life.

But, things don't ever really work out like we plan. I have learned that first hand.

Even when life is filled with trials and ups and downs, we have a chance to change things and make things better.

You are the only person that can make you happy. Even if you are being dragged around and thrown under semi after semi, you can either choose to be happy, or choose to feel sorry for yourself.

Me? I want to be happy.

But how do I make myself happy? Who is Pam? What does she want for herself, not those around her.

For so long I have held off on my dreams, and now I am ready to pursue them. Not all at once, just little by little.

Our condo has a clubhouse with a gym, so I am going to start working out and eating more healthy. Whenever I play softball in the spring and summer, I always am energized because I am exercising. So simple solution is to start exercising again.

I have been having some woman health issues lately. I don't know what will happen or where this path will lead, but for now it's time to take care of my body.

Anyhow, that's where I am in life. Now that I have decided that this is what I need to do for me, well, I hope to be back to blogging. I miss it. I miss my friends, I miss reading about all of you.

Okay, enough about me. I bet you are all wondering what Sir Rhett has been up to.

Well.....

ALOT.

I cannot believe how much he has changed since he started school. He is so grown up, and this little boy has himself some very good big boy manners. He even listens when I tell him no.

Sweet.

He has also learned some things that are not so good. Like, digging for gold....

Not the best picture, it was taken with my cell phone.

Rhett has also learned to open his own fruit snacks and Pop Tart wrappers. He is quite the little teaser, and will come up to you act like he is gonna give you a kiss, then say. "Heyyyyyyy" and turn around and run away.

He's also into the "mine" stage. You'd think I'd hate it, but I don't. I love it that he is acting just like any other child who is 3. I have to grin every time he does it. Granted, not while he's watching.

Hard to put on a straight face when I am so proud of even the naughty things he does. There have been so many times I never thought we would make it this far, yet here we are, and I am loving every minute of it.

He loves the bus, and gets on it with a great big smile, and a "Hi" to his driver and tech. His teachers love him, just like anyone else who has ever met him. I'm telling you, one glance into those baby blues and you're a goner.

Life is good, and things always work out in the end.

Today is Andy's birthday and we got to spend the day together. We went on a date which consisted of Bowling, Eating at Marley's, and wandering around the Harley Davidson shop. Then we went to a movie, and got to sit through the whole thing without taking kids to the bathroom. It was awesome. I'd forgotten how much fun we have together.

Things are looking up, and we are heading towards a new chapter in our lives. I can't wait to see how it all plays out.

Trials, Love and Tears.....

2009-03-11T14:59:00.000-07:00

I know everyone is struggling with the economy and life sucks for pretty much everyone right now.

Andy and I are blessed. We have each other and our children. We struggle financially. I think anyone with a child that has special needs, and who has a plethora of medical issues does. It becomes your new normal, and you can't remember what it was like before everything happened, nor would you have it any other way.

Andy's a car salesman. That means he gets straight commission. For a few months he did really well. The struggling economy hadn't hit Utah too hard. But now things are rough. Now we are really worried about how we are going to pay rent and utilities.

Last night I was really stressed about it. I was lying in bed wondering what we are going to do, how we are going to do it, and what the future will hold. I was watching TV, and everyone else in the house was asleep.

About 2 am I heard my favorite little three year old feet, padding down the hall into our room. I wish you all could hear that little sound, and share the joy of knowing what is coming as soon as those little feet reach you.

I laid there for the 3 or 4 seconds that it took for Rhett to reach me, and marveled in the joy of the sounds that make my heart soar. As soon as he saw me, he gave me a sleepy grin. He rubbed his droopy eyes with his chubby little hands and raised his arms to me. "Up Mommy", he says.

I picked him up and was the lucky recipient of one of his gigantic bear hugs. Then I laid him in between Andy and I. He pulled up the covers and snuggled down in between us, and put one hand on Andy's back, and one hand on my arm. He looked at me and grinned that sleepy grin again. "Happy, Mommy."

Through my tears I said, "Yeah buddy. This is what happiness is all about"

My sad tears turned into happy tears.

I love each one of my kids so much. I am so blessed to have such an amazing husband, and a strong marriage. We might get on each others nerves once in a while, and Andy may be gone alot trying to provide for our family, but the moments that we spend together are so precious.

Rhett's favorite treat has always been M&M's.

I have always told him that I love him more than all the M'n'M's in the world.

Chloee is loved more than all the Daisy's in the world.

Hunter is loved more than all the stars in the sky.

Dakota is loved more than all the fish in the sea.

And Andy. Andy is my knight in shining armour. My soul mate. I love him with my whole heart and soul.

After pondering this, it helped me to realize that once again, money really didn't matter. It usually works out in the end.

Besides, I have faith.

Faith guides us through the tough times, and Love guides us through everything.

Hobos and Buses......

2009-03-09T10:07:00.000-07:00

Chloee is home from school today again due to her icky rash. After we got the rest of the kids off to school we decided we wanted Mcdonald's for Breakfast.

Because Chloee looks like blotchy scary monster (her words not mine.), we went to the drive up window. As we were sitting there waiting for our food she asks me:

"Mom? What if they had a walk up window for Hobos?"

After I spit my coke out and changed my underpants from laughing so hard, I looked back at her and said,

"Um I don't think Hobos have the money to eat at Mcdonalds."

She pondered that for a second and said,

"Oh. Well, maybe they can walk up and say, 'Hey give me some money so I can buy a double cheeseburger with extra mustard and pickles.' "

Sigh. I have no idea where she gets this stuff. What a goof.

We did get lab results back on her and she does not have Lupus. Just some type of a nasty virus going on.

Rhett got on the bus for school for the first time today. He wasn't too happy. I felt so bad seeing his little chubby hands reaching out to me, and the big tears rolling down his cheeks. I just hope he did well. He should be home soon, and I am sitting here biting my nails waiting for him.

Buses are scary. They are big and they make alot of noise. I can't imagine what it's like for a three year old with special needs getting on one, and being surrounded by strangers. I hope I didn't traumatize him too much. We'll try it out this week, and if he doesn't like it, then I will take him until he's ready.

I know that there are times that I am more worried about things than he is. I am hoping this is one of those times. He understands so much more than I give him credit for.

I am way too over protective of him.

Anyhow, that's how my Monday morning is going. What are you up to this week?

Toy Wrangler Review and Giveaway!!!

2009-03-06T12:09:00.000-08:00

Who's ready for another giveaway?

While browsing the Internet in search of a product that would keep Rhett from hurling sippy cups, binky's and toys at innocent old ladies while out shopping, I came across the Toy Wrangler. This product is amazing I tell you. Amazing!!

The folks at Toy Wrangler generously offered to send us a large and a mini to try out.

This is what the Mini looks like.

What I love about this, is that you can use either end of it. Check this out....

The cloth end works great for cups, and larger toys. You just clip the linky to the stroller or shopping cart, or the handle on an infant car seat, and you have a holder for a bottle or a cup! Or, you can use the stretchy end and attach that to something, and the linky part can hold a binky, or you can attach at smaller toy to it.

But wait, because it totally gets better. Check out the large one.

This actually attaches to the shopping cart, and the beauty of it, is that it stops Rhett from sucking on those nasty germ infested shopping carts, and from injuring old ladies.

What more could you ask for in a product?

So Kristy who is super sweet by the way, has offered to give away 5 mini Toy Wranglers to my readers!! The Mini's come with two attached to each package, so that's 5 sets of two. How cool is that?

Winning is Simple.

Head on over to the Toy Wrangler Website, come back here and leave me a comment telling me something that you learned about this product that I didn't write in my review.

If you want an extra entry, as always you can:

1. Tweet about this contest on Twitter.
2. Follow my blog.
3. Follow me on Twitter.
4. Post about this contest on FaceBook.

This contest will close on March 19th at 5 pm MST.

Good Luck!!

Kimochis Winner.....

2009-03-06T11:55:00.000-08:00

Okay, I know I am totally slacking on this, but I have good reason. At this point we think Chloee may have Lupus, and I have been running around getting lab work and all sorts of other tests done on her. Add that into taking Hunter and Rhett too and from different schools all at different times, and well let's just say that I have been running around like a chicken with it's head cut off.

So without further ado, here is the winner of the Kimochis chosen by random.org.

Megan of the Carter Zoo Chronicals!! YAY Megan!!!!

If you didn't win, please consider going over to Kimochis and purchasing a bug. I cannot tell you how much this darling little bug has made a difference in our household. We even send it to school with him to aide his teachers in helping him sort out his emotions to avoid head banging. I love this product, and I stand behind it 110 %. I am so grateful to this amazing company for changing our lives.

Thanks for entering and keep entering our giveaways. We have some great things coming up in the month of march!!

Totally Didn't See This One Coming.....

2009-03-03T18:18:00.000-08:00

So yesterday we got a phone call.

It was a good phone call. A really good phone call.

It seems that since Rhett has had a relatively good winter with hardly any major illnesses, he got to do something today.

Can you guess what it is?

Ya. I know. I am just bursting with pride too.

He started Pre-school today.

See? Here he is with Daddy in the parking lot of the school....

Here he is in the parking lot again, showing off his super cute new "Uppy" backpack.

I cannot believe how grown up he is, and how freaking red his hair is getting!!

"Hey dad, I got this...I can open this door on my own...I am a big boy now."

Hanging up his back pack with his teacher Miss Laura.

Wow. Pre-school.

I remember back in October when he turned three and was supposed to go, but the Dr's thought he needed to stay home so we could watch him and see how he did health wise. I felt so jipped that he didn't get to go when I knew that he would just love making new friends.

So when we talked with our pediatrician during Rhett's well child check last week, and we discussed how well he had done throughout the winter, (I mean he really has considering what he went through the last two winters...) We got the go ahead to let Rhett take a giant step in his progress by heading off to school.

I didn't expect it to be so soon, but yesterday his teacher called and said if I was willing to bring him this week, until they get bus services set up, he could start today.

This morning we got Rhett out of bed and dressed him in his cute new clothes...the kid has outgrown everything he owns...and took him to school.

When Hunter found out that Rhett would be going to school, he looked at me and said..."Wow, I hope for the teachers sake everything in that classroom is secure."

It took me a good 15 min to assure him that these teachers handle kids like Rhett all the time, and that they would be okay.

I had to giggle that he was more worried about the teachers than Rhett.

We dropped him off, and he looked like he was going to cry, but he didn't. The note at the end of the day said that he cried for about 5 minutes when he had to go back inside after recess.

Yah, that's about Rhett in a nutshell.

It also said that he is a good kid....a "busy" good kid.....

So, in other words it probably took all they had to keep him from dumping everything in sight out, and they were chasing him around from one mess to the other.

~Just like at home.

All I know is that this kid has gotsta himself some structure in his life. Hopefully that is what school will do for him. He's smart as can be, but he thinks he rules the world.

At the end of the day when I went to pick him up he was sitting on the carpet singing songs. I watched him from the window, and he looked at the teacher, looked at his aide, and when he realized they weren't looking he reached up to the little girl in front of him and ripped the clippies out of her pretty long brown hair.

I busted out laughing.

I think school is going to be great for him. At the very least he'll have a little girl to steal clippies from. What more could a 3 year old little boy ask for?

An Angel Gets Her Wings.....

2009-03-02T10:34:00.000-08:00

I was going to post another review and give away this morning. But I can't do it.

See when Rhett was up at PCMC a while back we found a beautiful family that had the most adorable little girl.

Her name was Gracie. I love the name Gracie. If Rhett would have been a little girl that would have been his name.

This little Gracie was born with Hypoplastic Left Heart Syndrome, and she has had it so rough from the very begining. A couple of weeks ago, this beautiful little family found out that Gracie was not a candidate for the 3 step surgeries. At that time they listed her for a heart transplant. After just three days of being on the list, Gracie recieved her new heart.

But the heart didn't work right, and she has been struggling and on ECMO.

They have decided that Gracie's little heart is not going to recover, and today she will earn her angel wings.

My heart is breaking for this family. Nothing has been easy for them, and Gracie is the most beautiful little girl. Her smile and her eyes just melt my heart.

Please, if you pray, say a prayer for this family that they will have the comfort and strength to go on without their Gracie. Go and read their blog from the begining. Fall in love with this little girl, and be inspired by her parents and the strength and faith that they have.

Gracie has touched our lives, and we will never forget her.

To view their blog go HERE.

Zarbees Cough Syrup Giveaway winners!!

2009-02-27T22:03:00.000-08:00

Okay, and now for the Zarbees Cough Syrup winners.

April, from Salisbury 8

Lisa L

and

Nancy!!

Great job you guys!! Just email me your addresses and they will be there soon!

Fuzzi Bunz Contest Winners!!

2009-02-27T21:52:00.000-08:00

Okay, I know you are all crossing your fingers and jumping up and down waiting for this one, so drumroll please....

Lyndi from the Shupp Family is the winner!!

Please email me your addy and your final color choices, and I will let Tereson know. Thanks for entering!!

This was chosen by random.org.

Signing Time DVD Winners!!

2009-02-27T21:41:00.001-08:00

Okay, so I tallied up all the votes, and here are the winners.....

Photo's: Jacob!! Congrats Jacob, your DVD will be on it's way soon!

Blog: The Ellinger Enquirer!! Congrats and your DVD will be on it's way soon as well!!

Thank you to everyone who entered, and I hope you enjoy your new Signing Time DVD's!!

For those of you that didn't win be sure to check out the Signing Time website for all of their great products!!