How is James doing?

I get this question a LOT, and many times I forget to post about it when he is doing WELL. I have a few minutes right now - not a TON of time - but enough to say that lately he has been doing pretty good.

I got a call from the school nurse a couple of weeks ago, and she asked me if we have ever considered getting a g-tube for James. I laughed. "Yes, he has been on the brink of that his entire life!" I said...

But he's not vomiting too much anymore... I thought he would be GAINING weight, because he stopped vomiting, lost function and stopped crawling, and started on the Bright Beginnings Soy Drink (high-calorie drink) all around the same time....

However, he was down a couple of pounds recently when we had him weighed, so that was concerning... and very discouraging. I have a theory about why this is happening, but I don't really have time to go into it right now... Cora, our home nurse, helped me figure it out..

But anyway...

The school nurse just said that she has seen kids who get g-tubes start to feel a lot better and do better in a lot of different ways.

It made me realize the importance of following the prescription for his high-calorie drink, which is FOUR CANS a day. It's a LOT. It has been a struggle to follow this, and a HUGE struggle to get the school and playcare people to give him enough to drink.

Plus, he is supposed to drink other fluids like water and juice, because his body processes the high-calorie drink more like a solid, and his bladder and kidneys just need the pure, easy stuff, like water, to stay healthy!

So, I added a section to his daily report that includes a place for everyone who is caring for him to record the fluids that he drinks every day, so we can track that and make sure he's getting enough.

I also got his pediatrician to write an official doctor's order for minimum amount of fluids that he MUST drink. This has been helpful for getting the school and nurses motivated to actually follow through.

This has been SOOOOO positive for his health.

Everyone is on board now, and everyone in James' life is working at getting him the fluids he needs. He has been drinking everything by syringe - we use a 10ml. syringe, and just squirt his drinks into his mouth that way, instead of trying to get him to take sips out of his cup, which was a slow and near-impossible process that wasn't working. The syringe thing is working much better, and he is drinking a lot more, and a lot faster.

When he is hydrated and has the calories his body needs, he feels a LOT better. He has been in a great mood lately, and though he still gets frequent head and back pain, it is not coupled with a lethargic, miserable countenance. So we just help him through the pain as best we can.

His home nurse, Cora, has been working on tummy time and rolling from side to side with him, and my parents have been doing that on Tuesday nights with him as well. I hope to get him back in his stander on a regular basis soon. Seth and I have been working on range of motion exercises and stretching. His legs (especially) get sooooo stiff these days.

So that's the jist of how he's doin' !!!

I'll write more later.

I have had a TON of interruptions today.

-Lynae