I talked to CHOP and they strongly discouraged getting a wheelchair that this point. They told me that the window for kids with SB to learn walking is really 2-5 years old, so he is on the early end of the curve. If we were to get him a wheelchair now, he would probably choose to be in the wheelchair over the work of learning to walk, and we would probably be more tempted to put him in the wheelchair, too (it does take him quite a while to walk from point A to point B, but that is more because of distraction than ability). Additionally, they said that if we send a wheelchair and walker to school, the teachers would always put him in the chair over the walker. So after talking to CHOP, and then to his PT at Children's Specialized (outpatient PT, aka "Baby Gym"), we are going to hold off on the wheelchair for now. I am comfortable with this decision.
Now that we've recommitted to walking, I have had Oli walking everywhere. To and from the car, from the karate school to the pizza place, and even around Party City (which was maybe more than I was ready to tackle). He is doing great, and seems to love it! We get really positive reactions from people. He did fall once yesterday, which is a big fear of mine since his knees are locked so he can't really break his fall. But he was able to put his arms out in time, and it wasn't so bad. I guess he has to fall a few times before we are both comfortable.
19 March 2010
15 March 2010
Time Flies
Okay, so that is more than my attempt at explaining why I haven't posted in so long. It is also an observation fueled by Mac's 5th birthday (!), the fact that I enrolled both kids in school this week (!!), and the sheer lack of time that I have in any given week (so that come Friday, I look back and wonder what I did all week).
Yes, Mac is 5. It seems so weird (how can she be that old), but also very appropriate. Perhaps because we have been building it up for so long, 5 seems to be the perfect age for her. Not to young, and not too old. We celebrated her birthday with a trip to Uptown Playground, and indoor play area. She and Oli had a lot of fun. It was great, because it was clean, almost empty, had the coolest climbing equipment ever, and lots of free room for Oli to get around in his walker. Then we had Chili's, and Cold Stone ice cream cake with grandma and grandpa. A great day. We are just having her parties this weekend. This is the first year that she is having a "family" party and a "kids" party. The kids party is kind of small, since she doesn't have a lot of friends outside of karate, and those friends that she does have outside of karate can't make it. But 5 or 6 of her karate friends are coming to the school for an afternoon of pizza, activities, and G-force. She is excited, so I am excited. But also so nervous -- I don't want it to be a loser party. I want it to be cool! I guess it will be no matter what if Mac is involved :)
We registered Mac for Kindergarten last week, but in true Lisa style, I couldn't find her birth certificate. So she isn't fully registered, but at least they know that she is coming. And Oli's EI (early intervention) case manager set up a meeting with the school district to start his registration, as well. He is transitioning out of EI and into an integrated preschool when he turns 3 (which is conveniently in August, so he doesn't have to enter mid-year). From what I can gather, he qualifies for a free spot in preschool based on his diagnosis, but they still have to evaluate him twice (perhaps that is why NJ is in so much debt!!). Ruth, his EI PT, was at the intake meeting, and mentioned that he will probably need a wheelchair. I felt kind of blindsided, b/c I thought we were making good progress with his walker. Admittedly I might be in denial, since he only really walks @ 20% of the time, and crawls the other 80. And we hit a lot of roadblocks, as well. For example, he just spent the last 2 weeks out of his HKAFOs (big braces used with the walker) because of a pressure sore. But I figured since he can walk, we just have to up his game a bit. But her argument is that if he isn't completely at ease with his walker, it will hold him back and he won't be able to keep up with the other kids. I'm afraid that if we introduce the wheelchair too soon, he will come to rely on that too much, and never really be a walker. So it is a real dilemma. I am going to call CHOP and see what they have to say.
So, time does fly, but it does involve progress. That is a good thing! And even though I feel crazed and busy, I almost always remember to cherish the moment. How could I not?
Yes, Mac is 5. It seems so weird (how can she be that old), but also very appropriate. Perhaps because we have been building it up for so long, 5 seems to be the perfect age for her. Not to young, and not too old. We celebrated her birthday with a trip to Uptown Playground, and indoor play area. She and Oli had a lot of fun. It was great, because it was clean, almost empty, had the coolest climbing equipment ever, and lots of free room for Oli to get around in his walker. Then we had Chili's, and Cold Stone ice cream cake with grandma and grandpa. A great day. We are just having her parties this weekend. This is the first year that she is having a "family" party and a "kids" party. The kids party is kind of small, since she doesn't have a lot of friends outside of karate, and those friends that she does have outside of karate can't make it. But 5 or 6 of her karate friends are coming to the school for an afternoon of pizza, activities, and G-force. She is excited, so I am excited. But also so nervous -- I don't want it to be a loser party. I want it to be cool! I guess it will be no matter what if Mac is involved :)
We registered Mac for Kindergarten last week, but in true Lisa style, I couldn't find her birth certificate. So she isn't fully registered, but at least they know that she is coming. And Oli's EI (early intervention) case manager set up a meeting with the school district to start his registration, as well. He is transitioning out of EI and into an integrated preschool when he turns 3 (which is conveniently in August, so he doesn't have to enter mid-year). From what I can gather, he qualifies for a free spot in preschool based on his diagnosis, but they still have to evaluate him twice (perhaps that is why NJ is in so much debt!!). Ruth, his EI PT, was at the intake meeting, and mentioned that he will probably need a wheelchair. I felt kind of blindsided, b/c I thought we were making good progress with his walker. Admittedly I might be in denial, since he only really walks @ 20% of the time, and crawls the other 80. And we hit a lot of roadblocks, as well. For example, he just spent the last 2 weeks out of his HKAFOs (big braces used with the walker) because of a pressure sore. But I figured since he can walk, we just have to up his game a bit. But her argument is that if he isn't completely at ease with his walker, it will hold him back and he won't be able to keep up with the other kids. I'm afraid that if we introduce the wheelchair too soon, he will come to rely on that too much, and never really be a walker. So it is a real dilemma. I am going to call CHOP and see what they have to say.
So, time does fly, but it does involve progress. That is a good thing! And even though I feel crazed and busy, I almost always remember to cherish the moment. How could I not?
Subscribe to:
Posts (Atom)