Our little Connor is growing by leaps and bounds. I've talked in previous posts about his desire to be independent, and this last little while he has grown even more so. In the last few weeks, Connor decided that food was no longer a necessity, and that he only needed milk and juice to survive. We tried every food we could think of that any kid might like--macaroni and cheese, hot dogs, fish sticks, chicken nuggets, chips, cookies, crackers--you name it we tried it. I didn't care what he ate as long as it was something. We did get him to eat saltines, pudding sometimes, and ice cream. But...most of our meals ended with Connor crying, me crying, or Adam walking out of the room in frustration.
He has done this before, but it was due to a stomach flu and passed quickly...and this did not. I thought maybe it was the Carnitor we started, but he stopped eating before that. So we were pretty stumped, and it got to the point where I was almost hysterical. The kid already has to have Carnation Instant Breakfast in his milk to give him more calories, and if he doesn't even eat the foods in his regular diet then all was pretty much lost.
So then, Adam suggests that if he likes to still drink maybe we puree up his food and feed it to him that way. I disagreed--telling Adam he needed to chew for healthy teeth and that I was sure he would change his mind or we would find something he would eat. After all, I'm the all-knowing mom, right? And somewhere in the back of my mind I was worried the SMA caused a weakness somewhere, and he was no longer able to normally...so I needed him to do it--just to prove to me that all was fine with his muscles.
Then, a few nights ago, he spends the evening with my mom. We arrived back at her house to hear the news that he ate applesauce and pureed pears, with a STRAW. Adam was right. I was wrong. He thought the straw was fun and exciting, and will try most things through it. And today for lunch, he ate his saltines with peanut butter, whole corn (with a spoon!), and applesauce with a straw and spoon. So maybe he'll be a Vegetarian for awhile...I don't care, as long as he's eating. (Can you puree hot dogs??)
Also, a few days ago, our independent Connor visited Bellarmine University to give the students in the lab our physical therapist (PT) teaches an idea of how to work with kids with SMA. Connor (and my) favorite part was the "running" on the treadmill. Okay, so he wasn't really running, but it was faster than I've ever seen him walk. He did great and was perfectly happy the whole time we were there. I think he just liked all the attention. And at the end of the day, his PT was his favorite person, because she gave him a brand new broom!
Check out the video of him on the treadmill:
http://s371.photobucket.com/albums/oo154/akdeluca03/?action=view¤t=100_1272.flv
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4 comments:
I can't get it to work!
Wow! He was doing great! Is the purpose of that to keep his muscles from atrophy? Or is it to actually get him back to walking?
What a fun video! Hang in there with the eating thing, that has to be frustrating. If it helps any, my kids' eating slowed way down at 2. That is hard though when he needs the calories so bad. It is surprising to me though how much they gained from 2-3, they were 15th percentile at 2 and 50th at 3 for weight all the while hardly eating. I guess they really do eat what they need. We'll be thinking of you! Have you tried making food fun, different plates, food that looks like animals, dipping sauces? We love go-gurt at our house, I half-freeze it making it less messy (emphasis on "less"). Good luck!
He is such a cute little boy! He looked like he was having a ball on the treadmill! Kai went through the same no eating stage. All he wanted was milk, so I gave it to him. His Dr. said he would eat when he got hungry which he eventually did and now, every five minutes he's hungry! I also tried the usual kid-friendly foods, but, he started wanting the same things Ben and I were eating like steak, fettucine alfredo, and garlic bread.
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