…And I’m not talking about the organization in Calgary (www.upsdowns.org)! I’m just talking about how I have felt about Jake’s progress lately. I have my ups, and I have my downs.
I feel like Jake is way more alert and attentive to his surroundings. We went back to water therapy yesterday, after having a three-week break for the Christmas vacation, and I noticed a HUGE difference in him. He was interacting with the instructors more, giving them more eye contact and way more attention. We always do singing at the beginning and end, and there is usually some sort of toy / object that goes along with the song. And Jake was holding onto the toys / objects for dear life! Whereas before Christmas, he would have looked at them, and not been the least bit interested in picking them up, putting them in his mouth, or interacting with them in any sort of tactile way. So, that feels like progress to me!
Eating has become another huge “up” for me. Jake is a rock star! He LOVES food, and has done really well so far in the eating department. We are getting him used to as many new foods as possible (one at a time, of course!) and so far, the only thing he doesn’t like is chicken (I think the texture is a little much for him at this point!) Also, I feel like he is starting to get the routine of mealtimes down. When I put him in his chair, he looks at me expectantly, and opens his mouth, even before I have the food ready! I do not know very many signs yet, but I do know the signs for “hungry”, “food”, “more”, and “all done”, so I sign those things to him before and after every meal, and I really do think that he’s starting to see what I’m doing and register it as corresponding with meals. Again, that feels like huge progress for me!
I took Jake to get a follow-up echochardiogram (ultrasound of his heart) yesterday. When he was born, they found a tiny hole in his heart. Everyone assured me that this was no big deal. That it was a very common ailment for preemies. That it would probably close up on it’s own within a few months. That it had more to do with being premature than with his diagnosis of Down syndrome.
It has now been 8 months, and so we went to do the follow-up, to make sure the hole has closed up. And guess what? It hasn’t. Boo. I was honestly in shock when the ultrasound technician told me that she could still see a tiny hole. It wasn’t even information that was on my radar; I was so sure that it would have been a non-issue by now.
It’s not a big deal, even at this point. I will wait to hear from my pediatrician, but likely the answer will be that we will just keep monitoring it for longer, and see if it closes up on it’s own in the next little while here. No one seems overly concerned at this point. But I’m still discouraged. To me, this is a down.