Sunday, July 12, 2009
Zoé in the sky with Daddy
We spent 3 hours at the MDA clinic last Thursday. Zoé's third one and my first. We met another plethora of doctors, PTs, OTs, etc.
Things went rather well. I was happy to hear that even though Zoé is a congenital case, she only had 850 repeats of the affected gene. The neurologist told us that typically, kids affected at birth, have at least more than a 1,000 repeats.
Again, it's not the number of repeats that really matters, it's how well our little ones affected with MMD do!
Everyone was impressed with our 'busy body', climbing on chairs, cruising the hallways, reading her books, practicing sign language, answering in French, in English.
I was reassured by many things the doctor said: that Zoé will most probably outgrow a lot of her symptoms. They will come back when she's a teenager, but having a base line is important. Then we will know what to look for when these symptoms actually come back.
As the doctor was checking Zoé's foot, she tried putting on her shoe, the neurologist thought "Wow, she's with it!"
Unfortunately, we were told that Zoé will eventually need surgery on that foot. Another bridge to cross when we get to it.
Interestingly enough, the doctor says that the message Zoé's brain sends to her foot is what makes it twist and curl on itself. With brain development and growth, we hope that things will get better.
As for serial casting, I was told to go with my "gut feeling", which I thought was quite surprising...how can one go with 'gut feeling', when a medical procedure is involved. Well, my gut tells me to go for serial casting. Zoé's PT doesn't think that night splints will work, so if we can make time before surgery, I am willing to try casting.
Zoé is so resilient and motivated that I'm sure she will find a way to stand up and cruise.
Today, we skyped her grandparents in France and they saw her walk across the living room while pushing her pushcart. It is amazing how fast she can go now. Then up on the slide, down, around, under, up top....it's never ending.
Zoé is outgrowing her PT's house as she is into a phase of exploration...it is delightful to watch.
With her Daddy, Zoé is developing more vocabulary: tree, car, shoes, shirt, door...
With me: encore (more), coquine (Mischievous one), cookie, dede (baby, Zoé has a hard time with her Ps and Bs), tati (Grandpa, instead of papi), tico (instead of Pipo, a character in one of her favorite Cds)
Voila for now. We hope this finds you all well.