Sequoya (5 years old) and Zoe (17 months)We organized the first official Ontario 1P36 get together this past Saturday at Rock Point Provincial Park. We had one family show up from Buffalo, New York (Sequoya is 5 years old with two older sisters and one younger sister). So, as it turns out, we were the only Ontario family who could go. The park was a little out of the way but it was a nice setting. It was wheelchair assessable and had lots of open space for kids to run around (and Sequoya loves to run around). It was great meeting a new family and it made us decide that we would like to organize a couple of get togethers a year in different places so that if people are unable to come to one, they can come to another one. As always, it was good to see where a 5 yo with 1P36 is at. It gives us hope in some ways and hits us with a dose of reality in other ways. It reminds us how much work we are going to need to do with Zoe in the future (as if we aren't working with her now!) We can tell that Sequoya's parents have put a lot of time, energy, and love into raising her. It was great to see how steady she was on her feet and to hear her say "more."
Zoe's first camping trip
After the BBQ abruptly ended with the rain, we went to our campsite to pitch our tent and put Zoe inside for a much needed nap. Zoe did great with the camping but we did notice she napped a bit more. It turned out to be a great afternoon for us because Zoe napped and we sat around talking and reading our books (imagine that!) We did wake Zoe to feed her since we didn't want her waking up at 4am hungry. Zoe was a little confused about eating in the dark and gave the trees a curious look in the morning like "Hey trees, why are you still in my house?" We are planning a five day trip next week with our friend Amanda and we are really looking forward to that. Camping seems to be a great holiday idea for Zoe. She may need to nap because of all the stimulation but then we can just hang out and not feel antsy since we aren't trying to fit in any sightseeing. We do have the hiking backpack so we can go for walks when Zoe is up to it. Zoe does get over stimulated when outside and does some arching and crying, but she seemed to calm down easily in the tent.
Zoe biting her fingers
One thing we hoped never to have to deal with is now happening. It is very common for 1P36 kids to bite their hands, fingers, and wrists. The kids don't seem to notice the pain involved and are looking for that oral stimulation (some of the kids also bite to show their frustration). Zoe came home with a deep bite mark from daycare on Friday and has continued biting at that finger. She now has another deep bite on another finger. It breaks my heart to see those little fingers bleeding. Zoe does seem aware of the pain however, so this gives me hope. When she bit herself and was bleeding at the BBQ, she suddenly started arching, crying, and looked at me. So we just tell her, "That is you doing that Zoe. That is your finger. You have to be gentle with your fingers." We are also encouraging her to bite other things like her chewy bear. The only problem with that is Zoe does not have the coordination to hold something to her mouth to bite it. So we have to sit with her and hold the toy for her to bite it. And as you all know, we can't sit there holding her chew toy all day when we are trying to do therapy, go to doctor's appointments, feed her, etc (not to mention clean the house, shower, cook meals).
Opthomology Appointment
We had some good news at the opthomologist last week. He said that he can definitely see improvement with Zoe's vision since she started wearing the glasses in April. We have noticed that Zoe makes better eye contact and will track a little better but it was very encouraging to hear the doctor say he saw improvement. We will continue with the vision therapy and glasses and return to opthomology in six months to try the VEP (visual evoked potential) again. Zoe did not respond well to the VEP last time because it involves a lot of flashing lights and she kept closing her eyes and arching. She also kept pulling the electrodes off of her head. Hopefully she will be able to cooperate in six months. Either way, we will see the doctor again at that time. It is encouraging to hear that Zoe is progressing.
Zoe's first camping trip
After the BBQ abruptly ended with the rain, we went to our campsite to pitch our tent and put Zoe inside for a much needed nap. Zoe did great with the camping but we did notice she napped a bit more. It turned out to be a great afternoon for us because Zoe napped and we sat around talking and reading our books (imagine that!) We did wake Zoe to feed her since we didn't want her waking up at 4am hungry. Zoe was a little confused about eating in the dark and gave the trees a curious look in the morning like "Hey trees, why are you still in my house?" We are planning a five day trip next week with our friend Amanda and we are really looking forward to that. Camping seems to be a great holiday idea for Zoe. She may need to nap because of all the stimulation but then we can just hang out and not feel antsy since we aren't trying to fit in any sightseeing. We do have the hiking backpack so we can go for walks when Zoe is up to it. Zoe does get over stimulated when outside and does some arching and crying, but she seemed to calm down easily in the tent.
Zoe biting her fingers
One thing we hoped never to have to deal with is now happening. It is very common for 1P36 kids to bite their hands, fingers, and wrists. The kids don't seem to notice the pain involved and are looking for that oral stimulation (some of the kids also bite to show their frustration). Zoe came home with a deep bite mark from daycare on Friday and has continued biting at that finger. She now has another deep bite on another finger. It breaks my heart to see those little fingers bleeding. Zoe does seem aware of the pain however, so this gives me hope. When she bit herself and was bleeding at the BBQ, she suddenly started arching, crying, and looked at me. So we just tell her, "That is you doing that Zoe. That is your finger. You have to be gentle with your fingers." We are also encouraging her to bite other things like her chewy bear. The only problem with that is Zoe does not have the coordination to hold something to her mouth to bite it. So we have to sit with her and hold the toy for her to bite it. And as you all know, we can't sit there holding her chew toy all day when we are trying to do therapy, go to doctor's appointments, feed her, etc (not to mention clean the house, shower, cook meals).
Opthomology Appointment
We had some good news at the opthomologist last week. He said that he can definitely see improvement with Zoe's vision since she started wearing the glasses in April. We have noticed that Zoe makes better eye contact and will track a little better but it was very encouraging to hear the doctor say he saw improvement. We will continue with the vision therapy and glasses and return to opthomology in six months to try the VEP (visual evoked potential) again. Zoe did not respond well to the VEP last time because it involves a lot of flashing lights and she kept closing her eyes and arching. She also kept pulling the electrodes off of her head. Hopefully she will be able to cooperate in six months. Either way, we will see the doctor again at that time. It is encouraging to hear that Zoe is progressing.
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