Thera Togs

 

Zoé is now trying a new type of straps, to keep her legs straight...they are called Thera Togs, they make her look like Wonder Woman.
We are leaving for France tomorrow. We will miss y'all, but will try to keep you updated as we embark on our French adventures.
For now, I am dreading the 10-hour flight,the 4-hour layover in Paris before our last leg of the journey, a 55-minute flight to Brest, but I have a few tricks up my sleeve:
Disco ball, finger puppets, books, DVDs, song books, and tons of snacks...all this should keep our traveller content for a while. In my dreams I see us dozzing off at take off...

Bastille Day 2009

 

Working the System

Well once again, trying to work the system. The Kafkaesque red tape, the filing, the pre-authorizations, the letters, the emails, the prescriptions, the invoices, the claims. I am so tired of navigating the system, but it is essential if I want to get Zoé what she needs.
2nd opinion, 3rd opinion, when will it stop?
While I deal with all of this, Zoé is sleeping. I am simply going to post some pictures for you to enjoy:
Zoé and Grandma Gigi, Zoé and Maud, Zoé at the zoo with Mommy.

We are still working Zoé's daily arrangements: zoo, playdates, therapy, museums, doctor appointments, slides and merry-go-rounds...a mix that makes her world go round.

Soul Searching

I want to share what two of my friends wrote me recently. Comments on the blog or online really inspire me to write more and add depth to my posts. Soul searching is necessary. I do agree, numbness is an easy place to hide into, but celebrating and rejoicing are imperative to allow our little ones to thrive and blossom into beautiful, caring and compassionate people.


It's now almost midnight and I'm Zoe'd out. I read pretty much all of the blog. It was inspiring, funny, fascinating, educational, moving, sweet, impressive, etc. You have done a fantastic job on it. I know it must be a good release for you to write down and chronicle the challenges of your and Zoe's situation. I have thought many times how you don't get the special "firsts" that most mothers get. Actually, yours may even be more special by the time they become a "first". I want to say that I wish for you and David to try for a second and that he/she is without special needs, but that somehow seems to discredit how wonderful Zoe is. It would just be nice to see you enjoy a simple day of mothering, or at least have the time to enjoy a drink in your hand.

Hi Sarah,
I really want to thank you for sharing your blog with me... it is so incredibly thoughtful and for me just inspiring. I think it made me realize how I cope with most trauma in my life is just by doing, doing, doing that I forget to feel, and that can be dangerous. I realize that I haven't allowed myself the space to be vulnerable and just feel the wide spectrum of emotions. When I initially found out about M.'s diagnosis I worked through the emotions and pain at that time and just moved into a mode of scheduling appts, contacting doctors, lining up services ASAP that I told myself "I'm over it" I just need to do what M. needs most right now. I'm realizing now that my emotional numbness is preventing me from truly celebrating his recent accomplishments with genuine joy...

Well, I just want to thank you for allowing me to do some soul searching tonight as I read yours and Kayla's mom's blogs. I think I just might start doing some writing myself...

Hugs,

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.