Sunday, January 23, 2011

Brrrrrrrr....it's cold outside




















I haven't posted in awhile...I didn't want to jinx it. Gabe has been off night time feeds for a week! When we went to GI a week ago, his weight was up to 22 lbs which is 70th% on the DS chart. His height is anywhere between 60-80th% depending on how much he is squirming. Because he is gaining weight and eating well, we took off the night time feed and added on a 4th meal during the day (this is still a 3oz deduction of formula per day). The difficult part is that on top of his feeds, he needs to take 20oz of fluid a day. He doesn't like to drink from a cup and it's hard to make him thirsty when you have to space out 20oz throughout the day. We're trying to really push the cup in the morning especially, and starting to give him the supplemental water towards the end of the day. We are trying to give the majority of it between 8pm and 11pm when Gabe is sleeping. Problem is, he wakes up in the middle of the night having pee'd through his diaper. So now I'm trying to change him before we go to sleep in hopes he sleeps through it. The past 2 nights it has worked. We'll see. We just have to figure out a schedule that works for him.


We went for an evaluation at the Down Syndrome clinic at Children's last week. We met with a doctor, OT, ST, Dietitian, and Social Worker. The good news is Gabe is doing really well with speech. His expressive language is about 15 mo old. His receptive language is 16-17mo. Considering he is 18 mo old, we were really happy with this. The big delay was with OT. Gabe needs to work on fine motor. A lot of this delay is from his shoulders being weak. Also, Gabe refuses to crawl, and not being up on all fours can lead to delays in this area. He holds a crayon briefly. He doesn't want to put things in containers. He doesn't stack blocks. He doesn't self feed. The movements with his arms are very spastic and he throws everything. It didn't suprise me, but I was concerned when they said he was delayed with fine motor even for a child with Down Syndrome. So, they suggested we add OT and Speech at their clinic every other week to specifically work on self feeding. This is on top of the OT and ST we get with First Steps who come to our home. We have physical therapy 3 weeks/mo, speech therapy 2 weeks/mo, developmental intervention weekly, and occupational therapy once/mo. Now we will add these two on everyother week. I don't want to overdo it for my sake and Gabe's. I'm thinking when our next review period comes up, I'll rework some things. I may take away the once a mo OT, add on an extra week with PT and have our DI continue to co-treat with other therapists. It's overwhelming thinking about it, but we'll make it work. In an effort to work on fine motor, we tried fingerpainting tonight. He liked it!



Gabe is also doing great standing up without holding on to anything. He also is really scooting in his therapy walker, so we're pushing that as well.
I promise we do put 2 socks and 2 shoes on Gabe everyday. He just prefers to take them off all the time.

Sunday, January 2, 2011

Happy New Year
















Gabe had a really good 2010...here's to an even better 2011. Gabe has been such a joy lately. He is waving consistently. He started saying "mama" at about 16 months, but he is now doing it purposefully and with his lips together. He also started signing for book. Just this weekend he learned how to dance. He is also learning his legs can move seperately and is "walking" with less help. He is also eating much better with minimal rasberries. He is off babyfood and I feel like we are definitely making progress. Thin liquids continue to be an issue, but he does pretty well with the yogurt drinks that are a little on the thicker side. We go to GI in 2 weeks and I'll be interested to see where his weight is at and if we can back off some tube feed volume....fingers crossed.