A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, December 9, 2016

Spina Bifida Clinic

It was time for spina bifida clinic again!

Nick got to show off his crutches skills!
And of course impressed everyone!

Clinic Day is usally a long day, and so we came prepared to spend the day in the waiting room. But we actually spent most of the day in an exam room. So we could spread out our stuff.

We saw physiotherapy, who was very impressed with his walking. And orthopedics. He got the all clear for scoliosis. Nick has had a bump at the bottom of his cyst scar, I find it there sometimes and then not there at other times. I asked if I should be concerned from an orthopedic standpoint. But he didn't think so.

We saw occupational therapy. I had some questions about Nick's wheelchair, and the possibility of how to look at getting the FreeWheel. There isn't any funding for it anymore. So we'll keep that in mind when we are looking to buy it. She had some suggestions for the wheelchair, but we will follow up on them with Grandview OT. We also talked about Nick's computer and some suggestions for programs to help with typing.

One of the things with the SB clinic, is that you get to see everyone, but you need to also figure out who to talk to, to get some answers. Or at least know that you are on the right path.

When we met with urology we talked a lot about what we have been doing. After Nick's spinal surgery the urology issues we were having improved. Botox right now is another option, but not something we want to explore right now.
But the thing that got me excited was that I FINALLY had someone to recommend and actually suggest putting the PEG in our solution at night! I have asked this many times and have been told no.

We also met with Dr Church. She is my favorite doctor! Not only is she passionate about caring for Nickolas, but she listens and respects me. Both as a mother, an expect and a nurse. In fact, she sent her residents out of the room at the end of our assessment so that we could chat.

During our appointment we talked about Nick's overall health. She asked about school and Nick's IEP, I said that seems very basic to me, and I'm not sure what to do about it. I never even thought about his IEP or I would have brought a copy with me.
So I'm getting a copy of Nick's psycho-education assessment and his IEP to see if there are areas that we are missing that we can help assist him in his learning.

Overall it was a good day. Nick is 114.6cm, which is 17%ile, and his weight is 22.5kg, which is 42%ile. So he is shorter, but we know that this is most likely, and his weight is ok, if a little under but not concerning.

We go again in a year, but everything is looking good and stable.

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