So, I haven't updated little man's blog in a while. Man, he has a lot going on.
Let's start with EI.
He is getting ready to age out---onced they hit 3, you gotta move on out. We had him evaluated by the county preschool program. He did fairly well. We do not know if he was delayed enough to get in or not yet. Our meeting with them is coming up at the end of May. Honestly, even he got in, we probably wouldn't be sending him. While it's great for social skills, which he needs of course, it's just a lot of time away. It's 8-3ish Monday-Thurs. They really don't focus on feeding, his biggest issue of course--His speech is pretty good....he tested in Dec, at a 3.5 yr old level. I hear speech is what really gets a kid into their program, as feeding doesn't really effect his learning in a school enviroment. So, what we will probably do is his current SLP/Feeding Therapist sees kids outpatient at Kosiar and we will keep him going 1 hr a week with her. He knows her, really likes her and she knows him.
His birthday is less than a month away! June 6th...crazy. 3! It's been a long, tough road at times, but he is pretty amazing.....most days :) He is getting a little sassy though!
Coming up closer, May 17th, he will be inpatient for motility testing. He will be having an antro-duodenal manometry. "Manometry is the measurement of pressure or contractions in the small intestine.
The purpose of antro-duodenal manometry is to determine how well the antrum and
the duodenum work together." So, basically to see how his stomach and intestines work together....it is an overnight stay at Cincinnati Children's and he will be put under GA to get all the probes placed then we will be sent to a room to hang out while they do the testing. He will be connected to a small pump, which pushes water slowly through the tube
and into your child's small intestine. This in turn is connected to a computer. As the small intestine contracts and tightens around the tube, it
stops water flow. This contraction is recorded on the computer monitor and gives
the doctor a pattern of activity.
Sounds fun hu? sigh, no, really dreading it. I hate having him put under, I hate making him go through things that might not show an answer. The botox was a fail, I hate I put him through that. I am afraid this will be the same. I really went back and forth on even doing it, but Albert and I think it may give us some answers that 'could' explain things. I really think his not eating is medial. There has to be something going on GI wise that is causing this. While I am happy things come back normal, it sucks having no answers to anything almost 3 years into this. I am going to push again for genetic testing. We keep getting told no he doesn't "look a kid with genetic issues." really?? That's just silly. There is SOMETHING going on. It's beyond time to figure it out.
Trying to think what else, he has a ton of OT and Feeding appointments coming up--trying to get the most in we can before his plan runs out. Oh, we have restarted allergy shots with his new vials in hopes that helps with the gross congestion. Feed wise--we are working with the feeding team at Cincy and the dietician on a new blenderized diet for him. He would just barf up elecare all day---we would thicken 4 oz of elecare and right after he would puke and just say "im sorry mommy, I sorry." Heartbreaking. He does do better on a BD, but will still throw up. Of course my goal would be to get him on a full day of BD and not being hooked up to his pump all night. That would be a FREAKING dream. He has been on his new BD for about 3 days with only ONE SPIT UP! like a real just he burped and up come a tiny bit. He was even impressed! He said "mom, not throw up!" lol Poor kiddo. It has to be miserable to feel so bad with food. He is doing really, really well, fingers crossed. We have cut a lot of the fats that use to be in his blends, to help with digesting better, seems to be helping. He is up to...ready for....... this 5oz every 3 hrs!! It's pretty amazing for him. I just hope he keeps on this path. I LOVE making his food as dumb as that sounds. I like the calorie counting, the figuring out healthy junk I can throw in, Silly I know. His weight is good and he is growing well, he is is full of energy and spunk....what more could I want?
