Aug 11th - We have been so focused on Kyle's feeding issues for the last few months we've put his vision problems on the back burners even though at the Children's Institute they really feel that everything is related (can't see the food coming, automatically rejects it because it comes as a surprise). We haven't really done any vision exercises in a while (which I feel really guilty about but there are only so many hours in a day that he's awake and there're more important thing to work on). However I just realized in the last couple of days how much his vision has improved. I posted a question on a support group back in December when we first learned about the possible CVI diagnosis. I just got a new response a few days ago asking how he's doing so I went back to read what I wrote back in December and I can't believe how much he's improved.
Back in December he wasn't tracking unless he was in a dark room with lighted toys, wasn't focusing, wasn't reaching for toys, was constantly looking up at the ceiling. He now tracks and follows toys and people under any light conditions, he is now focusing on items for much longer periods of time without the "look, look, look away thing", he's purposefully reaching for toys and other stationary objects that don't make sounds which he wasn't doing just a month ago (he's now reaching for the fake crystals on the lamp sitting on a table in his room, grabbing and chewing on the tubing of my breast pump also just sitting on a table, always trying to grab our phones when we are holding him in one arm and have the phone in another). He wasn't doing any of that before we went to the institute. Pretty much anything he sees or presented to him he will reach out and try to grab. The only thing he's still having trouble with is eye contact. I still don't see him looking at us straight in the eyes much (maybe for a brief second or two but no gazing). He still occasionally stares at a blank space in the distance with no purpose but he never looks up at the ceiling anymore.
We started with a new speech therapist this week. She seems to be very knowledgeable on the anatomy of eating/feeding. She showed us some tongue exercises that look like PT but actually works for strengthening different types of tongue movements. We also had a PT session this week and Kyle got measured for his stander. They were supposed to bring a demo unit for him to use until his stander arrives (which is going to take a few months) but a piece in the demo broke so he won't get it until next week. Kyle is getting fitted for AFO's tomorrow and they will help flatten out his feet so he doesn't stand/walk on his toes. We are in the process of getting an OT on board (for like the 5th or 6th time). Fingers crossed that it will actually work out this time!
Therapy at home has been mostly the same (or as close as possible is the goal) to what Kyle was getting at the children's institute. We are doing a lot of sensory stuff, PT stuff, water play, feedings are mostly for tastings and trying different things. The speech therapist thinks he's the kind of kid who likes big bold flavors since the "newness" factor always plays a roll in his feedings. I tried giving him a pickle spear today and he played with it and enjoyed it. It wasn't as crispy and crunchy as I would have liked so I don't think he actually put it in his mouth. I will have to find a different brand that is extra crunchy to withstand Kyle's beating!
Back in December he wasn't tracking unless he was in a dark room with lighted toys, wasn't focusing, wasn't reaching for toys, was constantly looking up at the ceiling. He now tracks and follows toys and people under any light conditions, he is now focusing on items for much longer periods of time without the "look, look, look away thing", he's purposefully reaching for toys and other stationary objects that don't make sounds which he wasn't doing just a month ago (he's now reaching for the fake crystals on the lamp sitting on a table in his room, grabbing and chewing on the tubing of my breast pump also just sitting on a table, always trying to grab our phones when we are holding him in one arm and have the phone in another). He wasn't doing any of that before we went to the institute. Pretty much anything he sees or presented to him he will reach out and try to grab. The only thing he's still having trouble with is eye contact. I still don't see him looking at us straight in the eyes much (maybe for a brief second or two but no gazing). He still occasionally stares at a blank space in the distance with no purpose but he never looks up at the ceiling anymore.
We started with a new speech therapist this week. She seems to be very knowledgeable on the anatomy of eating/feeding. She showed us some tongue exercises that look like PT but actually works for strengthening different types of tongue movements. We also had a PT session this week and Kyle got measured for his stander. They were supposed to bring a demo unit for him to use until his stander arrives (which is going to take a few months) but a piece in the demo broke so he won't get it until next week. Kyle is getting fitted for AFO's tomorrow and they will help flatten out his feet so he doesn't stand/walk on his toes. We are in the process of getting an OT on board (for like the 5th or 6th time). Fingers crossed that it will actually work out this time!
Therapy at home has been mostly the same (or as close as possible is the goal) to what Kyle was getting at the children's institute. We are doing a lot of sensory stuff, PT stuff, water play, feedings are mostly for tastings and trying different things. The speech therapist thinks he's the kind of kid who likes big bold flavors since the "newness" factor always plays a roll in his feedings. I tried giving him a pickle spear today and he played with it and enjoyed it. It wasn't as crispy and crunchy as I would have liked so I don't think he actually put it in his mouth. I will have to find a different brand that is extra crunchy to withstand Kyle's beating!
 |
| Messy food play |
 |
Chewing on the spoon (but not food) |
Tickle Me Kyle (video)
Amused Kyle (video)