Last week was a big week for appointments. Initally I was planning on doing a "two week post surgery" update, but really, there was nothing to update then other than I didn't have to goo up Dominic's lip any more and he was off the antibiotics to ensure he had no infections. Plus I knew that this crazy week was coming up, so I guess I am doing a One Month Post Surgery post instead. Now that we've had a few more followups, there is a bit more to report on.
His G-button is going pretty Ok, however, I'm not really a huge fan. It causes me to run around the house more finding his tube in the morning and at night, and we still haven't mastered feeding through it while cuddling, so mamma's not all that impressed. I don't find it much better than the NG tube as far as ease goes. I think it is a lot better for Dominic though. Not having a tube stuck to his face all the time is pretty great for him. I still am nervous about it catching on things, but I'm sure I'll get over that eventually. I just have to get used to it and have THIS become the norm. Right now it is still pretty new.
His Cleft lip repair looks great to me. We had the followup with the Plastic Surgeon and she says it's not perfect, because we had to wait until he was older she had to stretch the skin and muscle he had in his lip further, so it resulted in non-perfection, which I figure she is more worried about than I am. (pretty sure that is typical of plastic surgeons, they want everything to look perfect) I just super-like the fact he doesn't have a big gaping hole in his face. I think her biggest issue was that he doesn't have that space between his gums and lip (like if you put your tongue between your front teeth and your top lip with your mouth closed, to make the monkey face, he doesn't have that space for his tounge), but she said that we can kinda go back and fix that down the road. The next big step is his first palate surgery, which she says she would never do until at least 3 months after the lip surgery. So she's saying September/October sometime. That's fine with me, that'll put him into the 13-14 month range, and normally they try to do it at 10-14 months. I was pretty much just hoping they would get back on schedule with these cleft surgeries so I am totally happy with that timeline.
We met with a "hand specialist", whom I believe is also a plastic surgeon but no one ever actually told me this, about his thumb on his right hand. He has always tucked it into his palm, ever since he was born, and he pretty much keeps his had fisted all the time. It was pointed out as a concern when we came back to RUH from Edmonton after his first surgery by one of his nurses. Because of his stroke, the most likely factor causing his muscles to tighten was something in his brain, so neurology was called to see him first. Neurology said it didn't look like a stroke issue and that it was probably a joint issue. So the joint people were called, and they said his joint was fine, so it must be a neurology issue.... and that's the issue we have been dealing with ever since. No one would take responsibility for his thumb not resting how it was supposed to rest. When we saw this hand specialist he figured it was probably a bit of both. So referred us to a Occupational Therapist at the University and we went and got a him a small splint for his hand to pull his thumb out of his fist at night, just to loosen the joint and muscle, basically addressing both problem areas at the same time. It's one of those things that I think when he gets older he will be able to cognitively keep it stretched on his own and it'll get better, but right now as he's not thinking about it we don't want it to get worse.So we'll keep doing this splinting until it's not an issue anymore or he can control it on his own.
The last big appointment we had last week was at the Kinsmen Children's Centre (KCC) with Dominic's Physio Therapist, Occupational Therapist, and Speech and Language Pathologist (SLP). Dominic is getting better with his motor control and balance and everyone seems to feel his is doing pretty well for all that he's been through. I think he will catch up for the most part, but I think he may be playing catch up in a lot of ways his whole life. I'm sorta still coming to terms with that. But he's really not SUPER far behind. We just have to keep working on it. The last time we had a meeting with his SLP she was asking what kinds of sounds he was making, and he mostly just does vowels for the most part, so she suggested mimicking his sounds and then throwing in some consonant sounds that we think he can still do with his unrepaired cleft palate (so sounds like M and N that don't require air to be trapped within his mouth) to see if he would mimic them back to me. So we had been working on that at home, and had made a wee bit of progress with Ms, but not a lot. At this appointment I told her so and she gave me a bit of a look and said that she had done more research on speech development in kids with clefts like Dominic's and she found some articles stating that they tend to develop the consonant stage quite a bit later than regular kids, I pressed her for how long and she gave me wishy-washy answers and I kept pushing more, so she admitted that he probably won't get those consonants down until 30 months of age... so about 2 and a half years old. That was a pretty big blow considering that if she was working from a normal kid's ability range, he should already be doing this. That is quite the set back. That doesn't mean I'm going to stop trying, but it changes our plans for the future a bit. The SLP and I talked about alternative forms of communication, so it's lucky I have a bit of sign language under my belt.
For the most part Dominic's appointments slow down for most of the summer, partially of my own making. I contacted all of Dominic's specialists that I figured would want to see him over the summer months and booked them at times I knew we would be home from the lake or pushed them back to the fall (most of them actually). So Dominic updates are probably going to be pretty few and far between after this. Just know that he is doing well, and we're working on everything and he'll be getting a tonne of fresh air at the lake whenever we can swing it! ;)
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