Monday, April 30, 2012

Feeding Update

Oh feeding...One of Gabe's big issues. Yes we still have the feeding tube. The good news is, we went to GI last week and Gabe weighed in at 25lbs 8oz. That is 50th% on the DS growth chart. His height was 80th% on the DS growth chart. They were very pleased with his weight gain and the variety of foods seen in his 3 day diet record. We dropped his last 3oz of tube feed. He is now eating all of his calories. This is a major accomplishment. I am so proud of Gabe (and our entire family) for making this progress. Now we just need to focus on the drinking for hydration. We tried to teach Gabe how to suck out of a straw, but he never got the technique down. We were using the "honey bear" training cup for a year to help him learn to suck out of it. As much as we tried, we had to help him and could never get more than 15oz/day in him. So, we are taking a different focus now and really concentrating on giving Gabe control and developing his technique and then focusing on volume. We are back to a tip cup. I recently started him on a new Avent cup that I really like. He's getting a little better with the coordination of cup tipping. Hopefully he'll catch on. At least it is now just one thing to focus on...drinking. As far as when the tube can come out...we don't know. As soon as Gabe decides to drink 25oz a day, then it will come out. Trust me...we will let you know. We will have a tube removal party don't you worry!Took the kids to see the butterfly exhibit at Krohn this weekend. Both of them are so busy and life is a little crazy, but I wouldn't have it any other way.

Monday, April 16, 2012

Walking

Many people ask, "when will Gabe walk?" Gabe's physical motor skills are very delayed...even a little more so than typical Down Syndrome. There are a couple reasons why this is:
1. Gabe had very little tummy time as an infant due to illness. Gabe went through stomach surgery and heart surgery and we couldn't lay him on his belly. Therefor, he didn't develop the muscels as well in his abdomen and shoulder, making it difficult to stand and balance. He also refused to crawl which is a precurser to walking.
2. Kids with Down Syndrome typically have poor tone. Gabe has to work his muscles twice as hard as the typical child to keep them flexed and active to walk.
3. He's stubborn and it is easier for him to butt scoot around, so that is what he chooses to do.
I know he will walk one day, it's just been a really long and trying process requiring lots of patience and work. Last weekend Justin and I were eating dinner with the kids on the deck. We were talking about activities for the summer and Justin made the comment, "I really thought that Gabe would be running around this summer. I remember thinking last year, that next summer would be so great because he'll be walking...and he's not. I know he will one day, I just really want him to walk". I said, "I know, I do too". There was about a 5 second pause and a little voice at the table says "sorry" and looks up at us and signs sorry as well. Gabe just broke my heart. I held back tears and told him we knew he was trying hard and would get there eventually. Later that night, he took some steps. Check out the video. I think he knew we needed it. He hasn't repeated it this well since, but it lifted our spirits, that's for sure. I love my little boy!

Monday, April 9, 2012