ST/PT/OT/GI Oh My!

I don't know why my son can't sleep past 5 am! For the past few days, he has woken up around 4:30 or 5 am. He will NOT go back to sleep. He will bang on his gate in an effort for the rest of us to get up with him. This is so not cool and I will be going out to get this boy some melatonin shortly.

Today was not a good day for him to be exhausted because he had an exhausting day ahead of him! First was Vitalstim @ 8am, PT @ 10am, OT @ 11am, and GI @ 1pm.

He was so tired and out of it for Vitalstim. The only good part about that is that he did not fight me and Ms. Shawna too much.

PT: Ethan pushed his wheelchair over 900 feet again, up and down halls. Then, Ms. Cindy (PT) put more weight in his chair. He could push it, but had a harder time steering and tuckered out about half way- so maybe only 450 feet weighted down. I was pleasantly surprised at him walking at all since he was so tired already.

OT: This is our second week with the weighted vest and it seems to be helping. The brushing is going pretty well and Ethan even wore his glasses for over 10 minutes without a full struggle to remove them! That is HUGE! Ms. Sue and Ethan read a couple of books, sorted shapes and colors, played with squishy toys, and bounced on a bouncy ball. Again, great session with OT that thoroughly surprised me because of his tiredness.

GI: I want to scream. I don't know what to do! So now, after a GI pow wow, they have come to the semi-conclusion that Ethan should get a G-tube. They have not been able to meet up with the surgeons yet, so they have not been able to ask the question of whether the pyloroplasty can be done without a nissen. I was highly confused. The last visit, we talked about a j-tube (directly into the intestines) vs. a g-tube because Ethan's issues aren't that he won't eat by mouth, it's that his stomach is so slow to empty. Unless he has the pyloroplasty, his stomach will still be emptying at a much slower rate (we are trying erythmycin, but it is not a long-term option). So, why would we put in a g-tube directly to the stomach when I can get the food in him by mouth???

So, apparently because of Ethan's weak esophagus, it is taking even longer to get food into his stomach. He could be losing some calories along the way. It is possible that this issue is contributing to Ethan not growing. Basically, the g-tube wouldn't take place of oral feedings, it would simply be for night time supplement. I really want to talk with the surgeon before we go this route. I don't want to put in a g-tube if it's really not necessary.

I have to keep a 3-day journal of everything Ethan eats and then fax it in so the dietician can go over it to see how his diet is. All this GI stuff is stressing me out!

Ethan konked out on the way home, of course! He is still napping. I think I will join him- it's been a day for me too! Plus, it's raining and that always equals good nap time! LOL!