Sunday, January 24, 2016

Snow and RS

It's been ages since I have had an opportunity to put together a post. Abby is doing wonderfully in third grade, with a teacher who can truly handle her well. She's had some balance issues in the past few months, which we are attributing to either inner ear fluid fluctuations or a growth spurt. Really, and thankfully, there is little to report in the world of RS.

We did notice a funny RS-related accommodation she has made to handling the snow. For years she has used these ski pole like contraptions to make her way through snow. Without them she can't manage to walk almost at all. When she was smaller she was stuck in an inner tube with a rope. :D This weekend was our first big snow fall and we noticed that she was making her way through the snow without her poles.

As it turns out she has discovered that when she comes to a larger pile that she can't make it through she flops on the ground and shimmies to shallower snow. It's hysterical... and it works! She was climbing the big snow hill (from the plow) and managing to sled down ON HER OWN! It's amazing how these kids can manage to make their world work for them!


  1. I love how adaptive she has become!

  2. Hello. I have a baby girl 2 days old. Although not yet determined if she is mine or not. She will always be in my heart. I am asking for help and understanding of this rhombencephalosynapsis. My friend's name is ashley and my babys name is zyaunna. She is so beautiful. I try to help ashley understand that zyaunna will be great. But the doctors dont seem to know much about this rhomb thing. If you could. Please contact me at ashley needs to see abby. I've only read a little bit so far. But im sure you would help more then i could to show her Zyaunna will be fine. Thank you.

    1. My baby girl is doing good. She is sucking on her binky now, gets upset when she dont have it. Hoping she will take to brest feeding soon. She is holding down her food, up to 40cc. I love this baby girl with all my heart and i thank god for watching over her.