Saturday, October 22, 2011

This is what its all about!

Today I was going to do my big reveal with a great picture of the kids in their costumes because we had a Halloween party at Disneyland last night.
But I spent the whole afternoon at the doctors office, 4 hours to be exact. The only thing done there, besides going over his life story, which takes some time, was a chest x-ray.
He's had fevers, gagging and retching, and tons of junk the last couple days. We still have no idea where the fever is coming from. He doesn't usually get a fever with a respiratory virus. Ears are fine, throat is fine. G-tube site is red, and I've also suctioned some red tinged junk from his trach, so maybe an infection in one of those places? They didn't do a VRP because it wouldn't be back this weekend, so we watch and see if it turns into more. They have the dreaded paraflu and adeno virus going around here right now. Praying its not one of those, because both have made him super sick in the past.
A lot going on with the little man right now. Kind of makes my head spin. His new ped's head will definitely be spinning soon too! Right before we left our Utah ped said she thinks his pituitary gland is not working. A few clues that made her come to that conclusion. She found a lab from a couple years ago that showed his growth hormone level was super low. She pieced it together with some other things. His chronically super low calcium levels. Times where he seemed septic, and everyone panicked, and then he was fine. She said those were probably times he needed emergency cortisol.
His legs, especially his right, are crooked. It almost looks like he knock-knee'd. His legs come together at the knee, and then go out to the sides. Its from never bearing weight on his legs. I'm not sure if its something that needs to be fixed with him or not, since he'll never bear weight. His hips pop every time I move him, another thing with no weight bearing. Hoping those don't need to be fixed. He spine is starting to poke out. Scoliosis, yet another side effect of not being upright, ever! Lots of ortho problems.
If we ever hope to feed him into his belly again, he needs yet another surgery to fix his nissen. This would be his 3rd nissen in 5 years.

Needless to say, I was a little overwhelmed yesterday. I didn't get to do Arina's hair all cute, because we were late to the party, after spending so much time at the doctor. I knew that even with robinol, Jax was going to be a junky mess at Disneyland, and we would spend the majority of our time suctioning him, and the suction would have to come with us on the rides.
Sometimes I wonder if our lives will ever be normal.
No, they never will, and that's ok, because moments like this is what life is all about. Its why we keep doing as much as we can while we can. Its why we drag tons of equipment all over the place. Its why we work so hard to keep our little man alive. Because he is the light of our lives! And he deserves to live his life, seeing as much as possible. Why, even though he is so fragile, he is not locked up in the house 24/7.

A smile from a little boy that rarely does. A sweet Peter Pan that comes right into his face, where he can see him, and talks to him. Ignores the crowd behind us, and takes the time to brighten a little boys night!

So there you have it. Peter Pan and Tinkerbell are the costumes. You were right! We were going to do Mickey and Minnie, since I already have Jax costume, but its packed in storage right now!
I personally think Jax is a much cuter Peter!!

12 comments:

Janet said...

I have never seen Jax's smile ... what an incredible gift :) He is such a handsome little guy. Yes, this IS what it's all about!

Team Carter Jay said...

Awwwww, sweet sweet pictures!

Kristin said...

He's an adorable Peter Pan!

Me ;-) said...

What a beautiful, beautiful smile! Love it!

Jeana said...

That is the most precious picture of Jax. I hope you guys get settled in soon and that your new ped will be as good as your one here in Utah. How fun that you can take Jax to that magical place! Can't wait to see little sister in her costume too.

The VW's said...

What a great costume on Jax! He looks so handsome! Love that Peter Pan stopped by to spend time with Jax! So precious! Get better soon Jax! Hugs!!

Brittney said...

You are so amazing, I absolutely love how you continue to live life, but more importantly allow/encourage Jax to live his life, instead of keeping him cooped up in the house. I have never met you but I definitely think there needs to be more people in the world just like you!! I hope Jax starts feeling better, and I hope you enjoy California.

Jessica said...

What a great picture! He is such a beautiful Peter pan! I can't wait to see tink. I think of you all often and hope that Mr Jax starts to ofeel better. I hope that you will get some rest, and please call whenever!

momof4inNY said...

Adorable!

Shelly Turpin said...

Beautiful picture of Jax - love it so very much!!!

Melissa said...

Love the costume and Jax's sweet smile!

Darren said...

I love, love, love to see Jaxson smile. Disneyland is the best!