*This post was written on Thursday, May 29th. I keep meaning to post it but the Blackhawks keep distracting me, Go Hawks!!!
After my last post I deeply regretted how focused I was on the negative, the throwing up, the lack of weight gain, and realized how much I had left out of the post. There is reason to celebrate in our house almost every single day and sometimes when I get stuck in the muck it’s easy to lose sight on the big differences we are making, how far we’ve come in such a short period of time.
For example, Aleck has started to show a huge interest in feeding himself. We’ve been working on self-feeding for over a year now and making very little headway until recently. It’s a regular activity at our OT sessions at the RIC where at the end of each of our sessions we do “snack time” where we set up a little table cloth and offer Aleck a variety of snacks and treats, constantly encouraging him to take “Dinosaur bites” of his graham cracker. For months he’s only shown interest in the graham cracker and nothing else, and his idea of a snack has been two or three teeny tiny little mouse like bites on the end of it. He was so hesitant and delicate with those tiny bites it would take almost 15 minutes just to get those three. Every so often we would try it at home as well and we always encourage self-feeding techniques at every meal but we mostly found them to be a distraction and a source of frustration making meal time a truly impossible task. So we adopted a laissez faire attitude, leaving the utensils on his tray, cutting food items in easy to hold pieces, but not drawing a lot of attention to any of it. We also decided not to incorporate this skill into his sessions at home since we really weren’t getting anywhere.
It wasn’t until the effects of the Reglan kicked in that Aleck’s interest in self-feeding took off, like a freakin’ rocket. It started at the RIC where he ate half a piece of matzah, since it was passover, leaving crumbs all over the floor and telling all the therapists proudly that he was eating matzah, some of them even knew what it was. No longer was I using his leftover barely nibbled graham crackers as snacks on the drive home. Soon we had to start setting aside 30 minutes for snack time because it seemed like he couldn’t get enough. During this time period he would even get frustrated with how long it was taking me to gently feed him each bite of scrambled eggs and he proceeded to put his face directly into the plate, taking bites and making snorting noises like he just couldn’t get it in fast enough. He was eating so well dessert became a regular feature and his daddy taught him that putting his face in his bowl of ice cream to eat was like eating out of a dog bowl. Now, before he face plants, he looks at me and says, “Like a dog bowl?”. Yes honey, like a dog bowl, eat up.
Then came utensils! He can now take his little fork, stick a piece of apple on it, and bring it to his mouth. And when he does he basically expects shouts of “Hurray” accompanied with an applause from anyone dining with him at the moment. And he’ll make sure that every single person at the table saw him and gave him his well deserved cheers, it’s pretty funny. Spoons are more difficult since our Cheerios in milk and our cottage cheese don’t necessarily stay on the spoon as he tries to turn it over and get it to his mouth, but he’s trying, and that’s the most important part. He’s even interested in trying to hold his bottle, using this blue ball that fits over the bottle and gives him more leverage. Currently he only wants to play with that after he’s finished his bottle, but hey, I’ll take it! What a 180 from what bottle time used to be like, thank goodness.
But as I mentioned in my last post, everything suddenly slowed down. We upped his dosage before each meal, we were waiting the minimum of 30 minutes from dose to feeding, and yet he would take a few bites and just refuse. After Craig and I put Aleck to bed last night we sat down and tried to brainstorm ideas as to why he had suddenly lost interest in his meals, what made this big turnaround. We started reworking his schedule thinking maybe he’s too tired. But when we played it all out we really couldn’t figure out how to get him to bed earlier without literally taking out his 11am therapy sessions since it’s all such a domino effect with three meals, three bottles, a nap, and six therapy sessions a week to get through. He’s not cranky in the mornings and he only falls asleep in the car when we are cutting it really close to nap time. Otherwise he’s up and smiling even while we put him down in his crib. So what else could we do, what else could we change?
Then today we had Aleck’s last Early Intervention meeting. As far as Aleck’s concerned it was a big party with all his favorite ladies there and he was thrilled. I was feeding him his bottle when his nutritionist arrived. She was studying us carefully, amazed at how calm he was now taking his bottle, no resistance, no complaining, no crying, and she remarked about how far he’s come. Then she walked over to examine his tummy, commented that it looked like it had gotten bigger, and then checked out his orthotics buckled around his belly. Kathleen suggested that the belt might make him uncomfortable while he’s eating. Ummm…duh. Or should I say, DUH!!!!! What’s funny is that idea flashed into my head sometime late last night but it was late and I was watching the Blackhawks play, and clearly it was a flash in the pan, but boy was I excited when she said something. Duh! No wonder he hasn’t been eating well. No wonder he wants to stand and eat when we are at the RIC. I’ve been so focused on integrating these new orthotics into our every walking moment that I completely neglected how it’s literally strangling his midsection, especially when he sits down. Then Craig and I had our own little flash back montage of how he’s been resistant to sitting forward in his high chair, how he hasn’t stuck his face in his food in weeks, how we’ve literally sat in front of him and tried to discuss concepts of feeling hungry, tummy feeling empty, like it needs something, is he full, etc., and of course we’ve gotten nowhere. Well, tonight we took off the orthotics and it was a truly successful dinner. The first one in a long time. We were playing games, we were having fun, he got to eat his ice cream “like a dog bowl” and it was awesome. Plus, he weighed in at 23 lbs today! It’s just a number but it’s another reason to celebrate.
To see a playlist of videos of Aleck’s self-feeding progression click here and enjoy. Watch closely how he uses a surface to help get that bend in his elbow to get the food to his mouth. When he was just a baby his surgeon at Shriner’s told me this is how he would one day get food to his mouth. Again, much sooner than we ever expected. Hooray!