For the third night in a row, Gavin has struggled to go to sleep because he isn’t feeling well. Last night it was a stomachache and headache. Tonight is was a stomachache again.
I think we need to get him into his gastro again and this time look at gastroparesis. Lizze has this, it’s genetic and it’s a large part of what makes her so miserable everyday.
We do have a mark in the win column tonight. Gavin did his infusion on his own once again and did a great job. I don’t think his condition at bedtime was related to his infusion, but who knows. There weren’t any obvious side effects and he didn’t have any complaints about how it went. We do however, need to order a new infusion pump. This one has worn out and isn’t infusing consistently.
As of right now, Gavin’s sleeping but he’s sleeping with his door open. He never sleeps with his door open but he said he wanted to make sure he could get to us if he needed to. This is a major deviation of his very ridged bedtime routine, so we know he’s definitely worried.
Hopefully, he’ll feel better by morning. I hate the idea of him feeling like this tomorrow as well. Hasn’t he already been through enough?
One thing at a time.. likely you could focus on the other things first and put off the neuropsych testing for a little while.. Its alot of information at once, but you are in expert hands with this doctor and he is getting to the bottom of it. You will find answers for Gavin. Just be patient.
One thing at a time.. likely you could focus on the other things first and put off the neuropsych testing for a little while.. Its alot of information at once, but you are in expert hands with this doctor and he is getting to the bottom of it. You will find answers for Gavin. Just be patient.
One thing at a time.. likely you could focus on the other things first and put off the neuropsych testing for a little while.. Its alot of information at once, but you are in expert hands with this doctor and he is getting to the bottom of it. You will find answers for Gavin. Just be patient.