Sunday, February 15, 2015

I have decided I don't want the genetic test results....


Bryan loves Legos!

He also loves to play with trains, cars, and Duplos.


I just love watching his sweet little face concentrate on building.

He sometimes gets frustrated, but nothing that help from a big brother or sister can't fix :)


I am so in LOVE with this little man!

His JOYFUL spirit, his easy going attitude, and his KISSABLE cheeks!

We saw another new PT this week. 

She has seen many SMA kids over the years so has LOTS of experience with them! She agrees that Bryan's AFOs are too heavy, bulky and not helping him (so we won't be using them anymore - YAY!). She is going to make him a cast to wear on his left foot/ankle at night to increase it's flexibility over time. Since he sleeps next to me my mom did mention that it should be an interesting night time weapon :) She also understands that SMA kids don't gain muscle - so typical PT isn't helpful. She talked a lot about preserving what he currently has and not fatiguing him too much. She talked about preserving him for the possibility of  future treatment/cure - that we want him at his best so he can take advantage of what might be coming in the future.

The PT also mentioned that when Bryan walks his hips get cocked funny as well as his back. She isn't sure we should push walking - if Bryan wants to then fine, but otherwise his crawling might be better for his body. 

That was kind of hard to hear....

The walker/gait trainer that is on order hasn't come in yet - I wonder if Bryan will even use it?

The PT did mention ordering a wheelchair at some point in the future. She said we would start with manual. I asked if we would teach him to move it around - but she thought that would be too fatiguing for him so we would push it for him. 

That makes me sad to to think about that.....

We expect to get the genetic test results this week - or next.

I have decided that I don't really want the test results. In my heart I know Bryan has SMA....but that slim, very minute, teeny tiny chance he doesn't have SMA will be gone once the official report is in.

THANK YOU for continuing to PRAY for Bryan and our family!

Blessings, Sandy

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