We just got back from a week in the Outer Banks and the we all had a much needed vacation. It was nice to have a hiatus from all the appointments and running around. We relaxed on the beach, played in the sand, flew a colorful kite, built drip castles, played in the pool, and relaxed in the hot tub. We fit a lot into the week. That sort of relaxation only comes around once a year and it has to last us to next year.
It was nice we even had the grandparents join us and lots of fun was had by all. Since we rent the same house as last year Thomas was much looking forward to playing in the pool at the house with the legs, as he described it. Everyday thomas would tell us he wanted to stay 7 more days. If only we could... We took the kids bikes so they could ride them to the beach. Also Connor has given up the stroller so I wanted to make sure when he got tired he would have some wheels.
T.J. And Pappy made some adjustments to Connors tricycle to keep his feet on the peddles. This has been an ongoing issue for us. I tried Velcro to no avail. I tried tying with shoelaces. I went to a bike shop to get some help with toe clips. I know Kettler tricycles have them so I wanted to check them out. They told me they wouldn't fit. So I bought some new kids peddles and straps for them. Well they didn't fit either. Well the guys finally figured they would do some engineering and drilled holes and used bungee to straps to hold his feet on. That worked. For two days. It was good while it lasted. Back to the drawing board.
Tomorrow is Connors second round of Botox. I am excited and nervous. He is doing so well so I am scared it might hinder his progress. But he has been developing a very abnormal gait because of tone in his foot that is causing it to turn inward. A big tripping hazard. In addition he is still not striking his heal when he walks and his hamstrings are tight. He has a hard time straightening his right leg out when sitting. So it is time to do more Botox. His arm and hand are doing better the. His leg and foot but still tone is kicking in and making things harder for him. I am nervous about the affects on his hand but hopeful for those on his leg and foot. Go figure. He just has made so much progress, so much that I think some would not be able to notice an issue with his hand at all. But I notice how difficult some things are. When he holds a cup his two fingers have a hard time opening up and one of his thumb muscles is pulling his thumb downward.
We have plans for intensive OT and PT afterward infants and toddlers will be sign him 1 x each per week and then OT and PT each at children's National Medical Center. Connor also has a transition class for Infants and Toddlers to schedule in that busy week.
yes that vacation was much needed and I will think fondly of it in the coming weeks!
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