Monday, January 9, 2012

Same ole same ole

I hate to not blog but everyday is about the same here. Not that I'm complaining!

I wouldn't mind if Asa's GI issues took a break though. We spend almost every afternoon with him very sick and miserable until he pukes or we drain his belly. We've used Farrell Valves but if he eats solids the stomach contents clog the narrow tubing. I emailed Vandy and asked for urine drain bags on the recommendation of several friends. Instead of calling them in they want to look at why he gets sick. Greeeaaat! I wish they could figure it out but so far I've been describing the same issue for 3 years and I get zero answers! Anyway we are going to add an afternoon dose of Prevacid. Do I sound skeptical?! I didn't have to drain him this afternoon.....I did it before 10am! Not a great way to start his day.

He has also lost some of his gross motor surge. He won't get out of bed in mornings on his own or walk very much. At school they said he wouldnt even walk today in the gait trainer. I try not to get my hopes up when he does a new skill because then I get all disappointed when he stops.

This was after school today. I love his recliner so he can nap in it instead of on me!

I love how he props his head up on his hands. He's been doing it a lot lately. I hate that he still has a paci but if he doesn't have one then his hands are in his mouth. It's pretty gross to think about the germs he's taking in or the drool running down his arms. So the paci is the lesser of the evils!

I'd appreciate your thoughts and prayers on Thursday morning. I have a meeting at Asa's school to talk about moving him to another class. I love his class, school, teachers and therapist so much but he doesn't have any peers to challenge him. He mostly sets the pace of the class and he can benefit from a more structured class where he learns the rules and doesn't set them! In my mommy heart though, I just want him to stay where he is and be coddled and loved on! I just have to keep in mind that I want him to grow and learn and thrive. I just hope I can be a good advocate and get all his needs met at the same time I push him to grow. I hate to start a whole new routine over. I'm concerned about germs from other kids. Will he be able to keep a paci or will he be gumming toys other kids gum on? Will he be able to have a calmer, quieter class that won't stress and startle him? Will I be able to pick him up at 2 instead of 3 like I do now? Will his room be too warm? Can he keep a drink with him? Will someone feed him since he can't feed himself? Oh see there I go worrying again! See I need prayers for Thursday! Thanks!


Anonymous said...

Hey girl, we will be praying for you!


~Jana~ said...

definitely praying and dont worry about his paci. Our punkin still has his. It's nothing to worry about in the big scheme of things and its a comfort to Asa so that's a no brainer! ;)