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 likes hanging with her 1P36 buddies Shelby (almost 3 1/2 yo) and Matthew (2yo). We went to Matthew's house for a delicious dinner last Saturday. Being with other families who know exactly what we are going through is so helpful. This was the first time we saw Matthew out of hospital, so it was great to see him in his own home and looking so well. Shelby has been very sick recently, so it was also great to see her looking healthy. I had to fix the red eye, so unfortunately you can not see Shelby's beautiful blue eyes. It is amazing how much Zoe and Shelby look alike! We got Zoe's high pigtail idea from Shelby's mom- it works well for our kids that still rub their heads back and forth so that regular pigtails quickly fall out.
Zoe also likes eating (most of the time). At her 18month check up this past week, we found out that Zoe has gained another 20 oz these past six weeks. Zoe's current weight is 8.1kg or 17lbs 13oz! Way to go Zoe! 
Zoe loves her ball that she got from her cousin Lucy last Christmas. When Zoe first got this corner chair, the ball was one of the first toys she played with in the chair. Daddy was so happy that Zoe could finally play ball at 11months old that he got a little misty eyed (daddy is such a suck). Zoe especially loves it when the ball whacks her in the face (crazy girl!)
Another thing that Zoe really loves is vestibular stimulation. Any time Zoe can be bounced, thrown in the air, patted very firmly, or swung she is happy. We use the hammock to give Zoe some stimulation time. Initially, Zoe was unsure of the hammock and would cry, but now she really loves it. Vestibular stimulation is supposed to be good for her cognitive and neuromuscular development. Zoe thinks, "Who cares, it just feels good!" 
