Monday, January 4, 2010

1/4/10

We're back on our normal routine now that the holidays are done. Jax had physical therapy this morning, but he didn't do very well. He was really sick. He had two episodes in the course of 30 minutes, so we cut it short. He's been bad in the mornings again. He sleeps pretty good until 6am - ish. Although he was up randomly the other night at 2am, but it seemed to have been a random occurrence, and not the start of something. I brought him into the chiropractor this evening, and his lower back and neck were out of alignment, hopefully the adjustment may help. He had an episode in the waiting room, and I swear everyone around us thought he had the flu...I'm starting to find myself not caring to explain to the strangers around us anymore that he's not sick and they can all relax. I think I'm crabby...I don't know. His prolapse (the stomach lining coming out of his tube site) is getting worse by the day and now leaking. I'm DREADING the thought of calling for an appointment to look into it. I can't stand thinking they would put another hole into Jax. I've had a nagging feeling lately about him, and it's freaking me out. 

It may be because Jason and I just saw the movie 'My Sister's Keeper'...that was really hard to watch, and not to mention PAUSE to run upstairs and help Jax through a violent episode twice. I know a little bit of it is because baby Grant who also suffers from this disease has been admitted back into the hospital. He's getting a blood transfusion tonight, and can't fight off a high fever. He's so sick again, and it's breaking my heart (please send good thoughts/prayers/wishes to their family).

We have an appointment with the alternative pediatric MD on Monday to discuss the latest test results (that were submitted in Oct) and see if there are any other supplements that could help. I pray we find that missing key. I haven't heard back from Children's Hospital about his last lab tests, but you know I'll let you all know.
Let's look at some cuteness...

The boys enjoying snack time and books on their big boy table.
They're discussing the book...
Jaxon letting out his man-chest after his bath!
Ahhh yes, stair gates...one of the necessities of our household.
Caught you stinkers!

2 comments:

Melissa said...

Sorry to hear Jax is having a tough time, when my daughter had a g-tube she had leaking as well. We had to use part of a diaper and some netting to keep it in place to soak up the leaking because she would get so gross with stomach contents. Praying for your little man.

Jenn said...

I am so sorry that Jax is having some troubles again. At least he was doing well through the holidays so you could enjoy those some?

I am thinking I should NOT watch My Sister's Keeper. I have a friend who has a child with some acute illness and she said she was all worried after watching that movie...I don't need more reason to worry...I do enough!

I will be keeping you in my thoughts and prayers...

Thanks for the tip on the play kitchen....I am looking into it!