Ah, yes a 2 hour late start. Gotta love the 5:30am wake up call to let us know the kids don't need to be at school until 10! Who can go back to sleep after that?
Our saga of finding physical therapy for Aly continues. I don't get why this is so hard! After not finding anyone, nearby, I called Health Partners to see if they could help. They directed us to Phenomenal Rehabilitation which is right here in St. Michael. I called and asked if they work with kids and told them what we were looking for, occupational therapy for hand and arm weakness. They said, "oh yes, we can do that." I was thinking, "thank God, I've finally found someone and they have available appointments right away!" Well, no, not so fast. I took Aly to the appointment, yesterday. We get there, spend about 10 minutes filling out questionnaires and medical history paperwork. The therapist comes out and introduces herself and brings us back into a room. She proceeds to ask why we are there and what kind of treatment Aly is looking for. I explained that she has dexterity issues, both speed and strength. She then tells us, "well, I am going to be honest with you. My expertise is in shoulder problems. I could help treat Aly, but I think you'd be better off going to an Occupational Therapist." UGGGHHHH! I told her that is what I requested when I made the appointment and they had told us, "yes, we do that." To which she replies, "well, they (meaning the receptionist) sometimes don't know the difference." Again, UGGGHHHH! So, another wasted afternoon of getting Aly out of school early, only to accomplish nothing! This clinic directed us to Sister Kenny, so we will try again on Wednesday!
Aly and I were both frustrated. When we got home, Aly proceeds to say to me, "I wish I could have a week where I didn't have to be me....no appointments, no shots." What do you say to that? I happened to be at the computer, searching for more info on low vision services and ok, also checking Facebook. I came across a video that a relative had posted. It was about a couple who have adopted several special needs kids from across the globe. I said to Aly, "I know it's hard Aly, but you have to remain positive, because things could be worse. You are healthy and can function normally." I told her I had just watched this video about adoption and then we watched it together. It was very heartwarming and wonderfully done. This couple had adopted a couple of boys with no arms. It showed how one boy learned to play the piano with his toes. This boy was adopted from Romania. He told his story, that in Romania, when you are born with a deformity, it is considered a curse from God, so he was cast aside and not given the care needed. He said he weighed 9 lbs when he was 1 year old! The other boy was shown getting into a special equipped van that he could drive with his feet. It was amazing. It spoke about how children can grow and flourish with a little unconditional love. It also spoke about how special adoption is, that when you are adopted, you are chosen from many in the world. I am paraphrasing, and not saying it as special as it sounded, but I loved the message and I think Aly got it too.
I hope that we will reach a point where there are less appointments, less frustration. It is not easy, especially when we've been wasting so much time! I left messages, for a few people, last Wednesday and just got return calls yesterday. I also asked Health Partners about low vision services. They had no clue of where I could find services and the woman also said that they wouldn't cover those costs anyways. They don't cover the cost of a white cane. That is another thing I don't get. How do health insurance companies not cover glasses, eye exams, or really anything to do with eye care? We've always had to pay out of pocket for glasses and such. Aren't they a necessity to function?
We are still waiting to see how the Botox is performing. It seems to have helped, at this point. Aly had a couple of jaw locks (which is an improvement) over the weekend, but NONE yesterday. I hope it continues! Last time she had it done, the Dr. said it takes about a week to see the full effect, so we'll patiently wait, but so far so good.
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