February....blah!

We've had a sick couple weeks here at the Lawrence household. I am finally on the mend. Poor Gabe started with a cold on Friday night. His fever got up to 102. He was so pittiful. He slept in our bed that night so we could snuggle with him and watch him close. This is not something I plan on making a habit, but it was nice to do it since we have never been able to with the overnight feeds. He's feeling better today, but is still a little drainy. He has been off night time feeds for about two and a half weeks now. His weight on Friday showed that he lost about 7oz. I was pretty disappointed. It took him a week to adjust to the daytime feed schedule and now he's been sick and not eating well so it doesn't suprise me totally that his weight it down. We go back in 2 weeks for another weight check and if he's still down, then we might have to change something. I'm really going to try to advocate not going back to night time feeds.
We are starting to see our PT's assistant this week. She is nice and we are hoping Gabe responds to her a little more. We really like our current PT, but Gabe freaks out when he sees him, so we are hoping this new face will trick him for at least a couple visits. Gabe continues to walk in his walker, but he still is unsure that he has 2 diffent legs that don't have to move at the same time. He still protests crawling. We are working on abdominal strength. I keep getting the feeling that as soon as he gets strong enough, he's going to do everything all at once....at least I hope.

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.

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.

sleep in heavenly peace

Gabe had a great Christmas...we all did! He's fast asleep now. We started out yesterday by going to Grandma Marcia's. Gabe got lots of clothes and toys.

We then went to Grandma and Grandpa Beiting's and got a grocery cart that is the perfect height to practice standing.

On Christmas day, we spent the morning together. Our good friend Erin came by to visit. We then went to the extended Maher family and Beiting family. It was such a great time.

I forgot to post last week that we're working on walking with the walker our PT got us. Gabe is still figuring out, but at least he likes it.

Merry Christmas everyone!

great weekend

We had a really great weekend. On Friday Justin and I had a night out which was tons of fun and much needed. We had a great time at Belterra. We went to lunch on Saturday for Justin's Grandma's 90th birthday. Today we went to Union Terminal Children's Museum with the DSAGC and saw the toy trains (and Santa again). Then later today we went to a football party. I'm wiped. Gabe is doing well. He's been blowing rasberries at us for the past 2 weeks while he is eating. Today he actually did really well. He has had a little cold that I think he's finally getting over and actually ate really well today without spraying me with food.

Ho Ho Ho

Gabe met Santa and Rudolph today at the DSAGC Holiday Lunch and Awards Ceremony. I thought he would freak out, but he clapped and smiled and was very excited to meet them. He must be trying to butter them up so he'll get some really good presents.

December here we come!

We have been very busy around here lately with lots of holiday fun. Gabe is doing well. We're really pushing the honey bear cup lately to try to get him to drink out of a straw. He puts his lips around around the straw well...just needs to figure out how get the liquid out. We have also been working alot on transitioning movements from sitting to crawling and sitting to standing. He is doing very well with it...just requires lots of repitition. Gabe has also been very loud lately. He is making some great sounds. He can BZZZZ like a bee and say BRRRRRR when it's cold out...too cute.