Tuesday, February 15, 2011

Ear Infections = Bad Nights....

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

Sunday, February 13, 2011

Fevers and Not Feelin so Hot...

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

Friday, February 11, 2011

I'm Me......

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......

Friday, February 4, 2011

Holy Moly What a Week.....

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.

Friday, November 26, 2010

Growing Up...

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!!!

Monday, November 22, 2010

It's Great Being 5!!!!

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!!

Sunday, November 21, 2010

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

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.
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