5 more days till vacation!

We're going to the beach. I'm so excited. We'll see how Gabe likes the sand.

Gabe sings and signs

3/21 World Down Syndrome Day

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brown bear brown bear what do you see?

I'm so glad February is over. Bring on March. Bring on Spring. Poor Gabe had a bad cough at the beginning of the month. Then we all got the stomach bug. We are hopfully now all on the mend. His Gtube is bothering him a little lately. It looks good, but I changed it out and put a new tube in yesterday thinking maybe it was just positioning. He's still a little sensitive today. I think it may be getting a little tight and he may be ready for the bigger size now. Eating has not gone very well this month due to all the sickness, but luckily, Gabe's weight is still up. He is doing well with transitioning movements. He is able to go from sitting to rolling, to sitting, to crawling position, to sitting, to pulling up on his knees to sitting and throw some splits and flexed hips in there as well. He's frogging around in his walker. We finally babyproofed everything. I think I'm the only person who is greatful to finally be babyproofed. Still no active crawling, still no active walking, but he's getting closer. He's picked up alot of signs lately. Gabe can now sign: eat, drink, diaper, goodnight, book, more, help, mom, dad, up, play, bye. I went to the Central Kentucky Down Syndrome Association Conference in Lexington on Saturday. One of the ENT's at Cincinnati Children's spoke about sleep apnea. I am really thankful Gabe's apnea was caught early. It was very interesting talk. I also went to a talk that a ST did that gave me some good ideas. She had a bunch of free ipad apps to help with speech. She also suggested using the voice recording cards you can buy pretty cheap at Hallmark and taping pictures on them to help. For example, have a picture of daddy blowing out candles on his birthday and record daddy's voice saying "daddy. it's daddy's birthday. Daddy is blowing out candles on his cake. happy birthday daddy". She also emphasized word completion. For example, have a picture of a cat (can print these from clipart). When they say cat, give them a picture. If they say "ca", tear the cat in half and give them half of it since they didn't complete the word. Emphasize the end of the word and they can have the whole cat when they say the whole word. She also emphasized, when your child starts saying words like "ball", it's okay to get excited, but don't pick them up and hug them, and give them m&m's...give them a ball...they did ask for it afterall. Those were the take-home points. They also had a speaker talking about the grant KY passed to fund the Best Buddies program to help kids with DS go to college. It was very inspiring. It sounds like UK, and especially NKU are really paving the way for this in the state...go Norse!

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.