Its been a long time!

Its been a really long time since I've posted. I guess I've been busy. I'm sure tons changed in the past year but I thought it time to let all the Makayla fans know that she's doing well. Growing like a weed and swimming like a fish, and remaining an undefeated thumb war champion!

Last September she was officially diagnosed after 7 and half years of testing. Makayla has an extremely rare genetic disorder called CTNNB1 happloinsufficiency. Yup its a big word!! Makayla is the 6th case in the entire world and the first in North America. Thats some special little girl, and uniqueness at its finest! There isn't very much information on this disorder, and it will probably take science a long time to catch up but a massive phase in our lives is over. No more wondering, no more tests, no more waiting for tests! I think its taken me this long to update because it was such a shock and then followed by a long roller coaster of some weird grief/acceptance cycle. Closure to the mystery, but letting go of the ounce of hope that there would be a magic pill to cure her, a magic wand to make it better. I guess part of me slightly believed that when we finally figured it out, all we would need to do is fix it. It seems that its not an easy task to fix something that effects every cell of your body. So there went that idea. The disorder is not fatal but progressive in nature to what they can tell. Progressive spasticity and scoliosis after puberty. However again with only 6 people ever, they really don't know.

For Makayla we don't know what the case will be, but we do know that she's awesome! She's on new seizure meds that have made a huge difference!! She has had an amazing year learning at school, learning to use a communication device, learning to walk, learning to be a comedian, learning that life can give her lemons but she's going to teach the world to make lemonade.

Thats it for now, but I won't wait so long to update again. Enjoy your summer!