Tuesday, November 20, 2012

Our warrior boy turns 7!

Today our warrior boy turns 7!
Wow 7, can you believe it?? Every time we go up a number, it gets stranger and stranger to tell people how old he is. The numbers keep going up but the little body just doesn't grow!
Current stats for this new 7 year old
25.10 lbs
36 inches long
pant size 2t
shirt size 3 or 4t
his tiny feet wear a 12 month shoe!
I believe last year his stats were exactly the same!

Many of Jax birthdays were spent in the hospital. The ones that weren't have never been a big party. Mostly because Jax doesn't know. He won't open presents, and he won't blow the candles out on a cake. We definitely celebrate this perfect little boy that has overcome so much. Every birthday I can't help but reminisce  I can't help but remember that 4 separate times before Jax 5th birthday we were told he would not survive. That's right, 4 times. This boy definitely has 9 lives!
I know some people won't take pictures of their children when they are really sick, and that's ok. I myself like to capture everything. I like to be able to look back and remember what we have been through. There is nothing wrong with remembering what happened. Its a time to put things in perspective!
The first time Jax was 4 months old. He had to be intubated for heart and respiratory failure. We were told then that it would be difficult to get him well enough to have his heart repaired, and he was in a very bad place. Man were they right!

   This picture was taken 4 days before Jax brain injury. After that brain injury we were told they could not fix his heart anymore, and that we needed to take him off life support! No parent should ever have to make that decision for their child!

When Jax was two he went into status, or constant seizures. despite all meds it just wouldn't stop. There was only one more med to try. Pentobarb, not to be confused with phenobarb. This med puts a person into a coma. Now some people say if there child is intubated and medicated they are in a coma. Typical drugs like versed and fentanyl that they use to sedate are NOT considered a coma. I have to set that straight to show just how truly devastating this drug is. It stops all brain activity, therefore stopping all body functions. He required medications to keep his body going while in this state. It was bad, so very bad. The ventilator was not able to adequately get air into those little lungs, and ECMO was discussed. We were told then that if the coma itself didn't kill him, that he would probably wake up still in status, and we'd have to take him home on hospice!

The summer before Jax 4th birthday was when he clotted off his SVC. Soon after his face and chest became extremely puffy, his oxygen need went through the roof, and his pulmonary hypertension was skyrocketing. He went to surgery to try and open up the SVC, which worked a little, but not enough to relieve the pressure. Because all of the other veins in his chest were also clotted, blood was having a really hard time getting back to his heart. This was when we made the gut wrenching decision to trach Jax. Most of the docs, including his ped, didn't think traching him was a good idea. They all wanted to just let him be. They wanted to let nature take its course, and once again hospice was discussed.

 I love to look at those pictures and then look at my pictures from the last two years. Despite some typical bumps, Jax has been the healthiest he has in a long time. He is the most amazing little person I know!

I think today I'll go buy a cake! I think we'll let him see the bright lights of the candles! We have a lot to celebrate!!
Happy Happy birthday Jax, you are the light of our lives!!


Alice Fraggle said...

Happy Birthday Jax!

Becca said...

SO much to celebrate!! He is an amazing and resilient little boy. Happy, happy birthday, Jax!!! We all LOVE you!!!!!

Anonymous said...

Happy Happy 7th Birthday Jax!!

unconventional said...

Love!!! Definitely--get a cake and candles :)

Mary P.

Darren said...

Wow! Seven! Jax, you are so awesome!

Sandryte said...

Happy Birthday Jax! Wishing you all the best! And the biggest cake ever!

Anonymous said...

Happy Birthday Jax!You are in my prayers each and every day.

Alison said...

Happy birthday - he definitely deserves a big birthday cake!!

Reagan Leigh said...

We always go all out for Reagan's birthdays! She's pretty similar to Jax developmentally, but I want her to have everything (and more) that a "typical" 5yo would! Not to mention each additional year we have with her is such a blessing, we like to celebrate it up!!! Happy Birthday Jax! Wishing you all the health and happiness in the world!!

Anonymous said...

happy birthday! you sure have lots to celebrate!

momof4inNY said...

Happy Birtday to your sweet, sweet boy!!!

Shelly Turpin said...

Happiest birthday little warrior!

The VW's said...

Happy 7th Birthday Jax!!!

Anonymous said...

Happy Birthday Sweet Jax!!!

kimk said...

I hope you had a very happy birthday Jaxson!!