Sunday, April 28, 2013

Big long update

Gabe had a GI appointment about 2 weeks ago.  When he has RSV in December, he lost a ton of weight.  Luckily, he rebounded well and was 27.8lbs.  That's slightly under 50th percentile on the Down Syndrome curve.  He is eating very well (as long as he's healthy).  We have started giving him more substantial breakfasts with a 200 calorie goal.  He continues to drink about 8oz of Pediasure a day.  I'm hoping I can ween the Pediasure this summer.  The drinking is still our biggest concern, and the reason he has the feeding tube still.  Gabe still can't really drink through a straw.  He doesn't have the suck in concept and usually blows bubbles out into the cup.  He is drinking well with an Avent cup.  He doesn't drool or pool liquid in his mouth, so I feel like the muscle tone in his mouth is much better.  He still tongue thrusts some when he swallows and chews, but is improving with this as well.  I think Gabe just really knows he doesn't need to drink b/c we help him out by giving water thru his tube and he doesn't often feel thirst.  At the GI doctor, they upped his fluid goal to 30oz/day.  They said we could do 3 day trials of giving him minimal volume thru the tube to see if this helps.  Their idea of minimal volume was 25oz/day.  25oz is our current fluid goal, and that isn't making him thirsty.  I really don't think they understand the issue.  So, I'm trying some things on my own.  The doctor said that if he has at least 3 episodes of urination/day, he's perfectly safe for a couple days, so I'm following that philosophy.  He can get up to about 17 oz by mouth.  Last summer when it was hot outside, he made it up to 20.  I think we just need to reset the expectation in his head and really have him feel thirst, and then relief when he takes drinks from his cup.  Frustrating.  We were hoping to have the tube removed this spring.  The GI doc said that would not be an option since Gabe was so sick this winter and we were dependent on the tube. 
Gabe had a dentist appointment 2 weeks ago as well.  He has all his teeth.  They are crowded, so he may have oral surgery once permanent ones come in, but for now, keep brushing and doing our thing.
Gabe had an ENT appointment 3 weeks ago.  One of his ear tubes was missing and the other was completely occluded.  He also failed the hearing test for low tones because of the fluid in his ears.  I'm waiting for surgery dept to call us to schedule another PE tube placement.  They said once the new tubes are in, he should hear no problem.
We had Gabe's IEP meeting this past week for preschool next year.  We set some really good goals around walking up stairs, beginning writing letters, following 2 step commands, and interacting more with fellow students.  Gabe is very friendly, but also shy with other children.  I think he's afraid he'll get plowed over.  He is doing more and more gross motor activities.  He is finally standing by himself.  He is cautious about this though and does not like to stand up if a crowd is watching for fear of embarassment if he falls down. 
Gabe has always done well with speech, but we are also finding that the things he is saying are less scripted. He is developing his own language which is fun to see.