Ian and I will check out a couple programs that might be our next step after UCLA. One is Step-by-Step in Santa Monica. They have preschool-1st as of the fall. We have friends there and they love it. The other is calle Pediatric Minds in Torrance. They have a short-term program 9-12 weeks that's supposed to be one on one with a neurologist overseeing the program and meeting with the parents on a regular basis. I guess it has quite the waiting list and the child has to be ambulatory to attend. But it's supposed to be amazing. We'll see how they look. And if we do in fact end up on their list, hopefully we can get Ian walking on his own by the time they would accept him.
Sad news today, one of the boys that was getting his therapy from NAPA passed away just before Christmas. I saw his Mom today while waiting to see a visiting doctor, whom Ian saw yesterday. We were there for 40 minutes waiting for the doc but he was seeing another patient. I had Ian in the stroller and reading to him because he's been sick and I didn't want him crawling around playing with things spreading germs. We had cancelled all 3 therapies and his cardiologist/echo appt today.
While we were waiting the Mom was being walked across the floor to the doctor and was clearly breaking down. I was afraid what I imagined was true and a therapist confirmed. So sad for her. I hate to think and say this but I'd imagine such a relief at the same time. In such a twisted way I'd imagine it would be hard to know what to feel. I'm sure the loss is so significant but the boy struggled in such and extreme way with every function. She's a single Mom and was absolutely amazing with him. I ask myself again and again, why does this happen? Why was he born this way? And why do they have to go through such extreme hardship and sadness. With so many children I encounter I wonder the same thing. What is the meaning of all of this and why are so many given such extreme challenges?
We are so fortunate for what we have. All that we have: our health, our love, our families. And our sweet Lila and Ian. Naturally as a parent, I want the best for both of them and will never stop striving for what is going to help them live their lives to their full potential. At the same time, I try to count my blessings for what amazing children they are and how far they both have come.
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Have you heard of Blind Children's Center downtown? I know a couple of families that go there and LOVE it. Might be worth looking into. It's an inclusive program and not just for kids with visual impairments. I know a little girl who goes there who has CP.
ReplyDeletehttp://www.blindchildrenscenter.org/