Thursday, May 4, 2017

Yesterday was a full day. We had PT for T at home, done by the school district. I don't know if I ever explained this, but we have a team of sorts, provided from the school district we live in. When you have a child that is declared disabled or is born under special circumstances, such as prematurely or under distress and they are put in the NICU, their name gets passed along to the county to be placed in a birth to 3 program. At least in Minnesota and I'm sure I'm explaining it in the crudest of terms. The county follows up with you once you are discharged from the hospital and offers to send a nurse out to help with well checks. Once they do that, they can assess for all different kinds of services, like physical therapy, occupation therapy, nursing services, etc. It has been both a HUGE blessing and a pain in the ass. Don't get me wrong, I would not trade it for the world. The resources these people have, the work they do, it's invaluable. The stress of trying to fit in another appointment, making sure the house is clean, putting on a bra and getting dressed... it can be overwhelming at times.:)

Then we were finally able to get him into the physical therapist's office here in town. We waited 3 weeks for this appointment. We have been trying to get a walker for him since February when he was evaluated at the spina bifida clinic by both his specialist and the physiologist for one. They gave us a prescription for a reverse walker and viola! We get a walker. Right? Nope. We went to Gillettes and they wouldn't measure him for one without evaluating him. We went to the rehab place in our town and the same thing. We couldn't get one from a medical supply store without a physical therapist ordering it. So we went to this appointment, waited over an hour for them to evaluate him, and we're told they weren't "comfortable" letting him walk because of how his legs turn in. My son has already had two surgeries on his feet. He wears AFOs and twister cables to (help) keep his legs and feet in correct alignment. They don't always keep them facing forward. That's why he needs more PT. The physical therapist recommended higher bracing, a gait trainer, and some other things. Mama bear came out. I asked how many children they see with SB. Well, he's our first. (I hear that A LOT around here.) "Okay... I'm going to call his specialist. And his orthopedist. We'll get back to you." I'm livid. Not because I don't believe what she's saying. Some of it actually did make sense. Not because she doesn't have experience with my child's condition. Everyone has a first person that "opened" their eyes to the unique challenges of a condition, so to speak. I think looking at something with fresh eyes and breaking from "it's what we do with everyone" can be helpful. I'm livid because I had my hopes up that we would have a walker ordered when we left. It's that next step to independence and normalcy for him and for us. It may not be degrading for him to crawl on a dirty floor at Target, but it will be. And the sooner we get him used to using a walker and building the muscles to walk, the better and longer he will be able to do it. So I was disappointed. I have calls out to both his specialist and his orthopedist. We will see where we go from here.

We celebrate my daughter's 6th birthday this month. She wants to go to a painting class, just me and her and paint a unicorn! I can't wait. ;)

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