Sunday, June 24, 2012

30 years young

I turned 30 last weekend. Justin and I ate at a fancy restaurant and stayed at a hotel downtown. It was such a nice time. Special thanks to my parents for taking the kids overnight. Date nights are necessary sometimes. My 20's were great and taught me a lot about love, loss, and who I am. I think my 30's are going to be pretty great too though. We met with kenton county for gabe's ARK meeting this past week. We wrote his IEP. We are happy with the amount of therapy he will be receiving and we didn't have too many disagreements which was nice. We are enjoying our summer. Alyssa sat up by herself for the first time today. Gabe is starting to play with her more. I had them both with me at the grocery this morning. I got one of the huge carts with the car on the front and the side by side seats in the back. Gabe didn't want to sit in the car. He wanted to sit in the side by side seat next to Alyssa. At one point he even had his arm around her and said "shopping, grocery store, Kroger, Alyssa" as if he was telling her where we were. So cute. They refused to smile in this pic. Gabe's eating coffee cake and Alyssa looks kinda stunned, but you get the jist.

Wednesday, June 13, 2012

Sam and Susie's Wedding

My brother Sam got married this past weekend. Gabe and I were both in the wedding. Gabe did so good. He held my hand and walked down the isle. The kids had a great time this weekend and it was so nice seeing all the family. We've been busy working on preschool stuff for Gabe. We will be writing his IEP with Kenton County next week. Gabe will also be finishing up First Steps when he turns 3 next month and we will have to come up with a new therapy plan. He will continue to get OT at Redwood. We are thinking of adding in a PT program this summer and then starting up weekly PT at Redwood in the fall. All this will be on top of school based therapy in the classroom. It's alot to think about. Alyssa is cute, but boy is she dramatic. She doesn't like to nap and has been throwing fits going to bed. She also thinks she's hungry all the time and then she over eats. She's so cute, but she's a handful in her own way as well. I'm excited for the summer with both kids. K

Friday, May 11, 2012

34 months...Gabe walks

Gabe has been taking uncoordinated lunging steps for the past week or so. For the past 3 months, he has walked around just holding my hand. Well, on Wed, he apparently decided it was worth staying up right and started walking. I think we're in a little bit of shock. He just took off. He maneuvers around corners and walks to people and objects. It was such a big change that just happened overnight. Way to go Gabe! Best Mother's Day present ever! See video link: http://www.youtube.com/watch?v=ojX4y4FUmmY

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