Thursday, February 18, 2010

On mange ensemble (We eat together)

New sentences are bursting out of Zoé's mouth, amazing I tell you.
We've been stretching her mouth, her face, and we will start Kinesio taping on her face, this time, as we think it can strengthen her muscles, jaw and cheeks.(See what a Mommy won't do for her daughter, I had to put the tape on too!!!)

This is what she's been saying:
On Mange ensemble
Elles ecoutent pas (they don't listen)
J'ai glissé (I slipped)
Change la couche, est mouillée (Change the diaper, it's wet)
La banane est tombée (the banana fell)...

It's amazing to see how language develops. It pops out of nowhere and seems like a magical spell that befalls these little kids.
It's surreal, and I am in complete awe.

Support group in PIP was emotional today as we spoke about the birth of our children, how for some of us it was the start of an arduous life to come, or how the birth itself was not what we had imagined, how unprepared we were to face the challenging times ahead. No matter what, I don't think one is ever prepared. You anticipate, you imagine, but all I can say is that there is nothing like it.
It is probably the most amazing time in our life. I like the saying, "we don't remember days, we remember moments", and that is so true. The moment in time when you are absolutely no longer in control of anything, when you simply have to let go, because, no matter what, there is no stopping "the machine" is coming and will forever alter the course of your life.

For all of us, moms in the support group, it did alter it big time, but for the better is what I want to say. In a way, we were ill prepared to face these challenges, but we were transformed, shaped and are now stronger for that matter.
We did admit that it is OK to cry and be sad, and let go, and curse, and grieve, but we know we can also celebrate these times of joy and elation. The little sentences Zoé can now make, how she communicates her desires, and what she doesn't want by repeating :"No No No" 5 times in a row! I love it!

Saturday, February 13, 2010

Mardi Gras

Recovering from an awesome party for Sisi and Adi's birthday: zydeco, hurricanes, grits, and King Cakes. It was fun and we LOVED our beads!

Zoé sang her favorite song all day long "Haty dirday to you, haty dirday to you, haty dirday Sisi Adi, Haty dirday to youuuuuuuu"

Friday, February 12, 2010


Friday has come after a week home caring for Zoé, sick with croup, then a double ear infection. No complaints on her part, though she kept asking for "tissues" and after she blew her nose she'd say "GIGI" for her grandma who came to see us and left with a cold. So cute that she knew who used those tissues!

Zoé's been talking up a storm: "veux manger quelquechose"...(Meaning wanna eat something) and then you have to list the menu items until she decides what it is that she wants to eat: cheerios, pomme (apple), fromage (no need to translate!) or yaya (yogurt, from Anne Sylvestre's song "ya des yayas, ya des yaourts a tout").

Zoé's been relishing bath time again now that we changed the bath toys into mini pots and pans. She makes soup with bubbles and "mac'ncheese" with shampoo, it's all fun, and like cooking it is quite scientific. She got a kitchen from Grammy GIGI for her birthday and, all day long, she says "Veux cuisiner" (wanna cook).

Her song repertoire is now quite extensive. She sings "jingle bells" (practicing for next Xmas), "Frère Jacques", "Itsy Bitsy Spider" and "Petit Bonhomme de chemin". She also loves to play the drums, Kazoo, accordion and maracas. Future musician, for sure. She loves it when I play the guitar (strumming one or 2 Bob Dylan songs) and starts dancing with her arms, moving her tiny body to the beat of "Mr. Tambourine Man". Waiting for her to stand so she can really shake the booty! That, too, will come in time.

She got a cute game for her birthday from Sisi and Adi, her BFFs, it's called ELEFUN.You put tiny butterflies in the elephant's head and he "spits" them out through his trunk with a little fan under the head. You then hold your net and catch them. Zoé goes CRAZY!!!!!!!!!!!!!! She doesn't care about catching them, she just loves to see them fly down onto the floor.

I guess I filled you in on our latest week. Looking forward to the weekend, we are invited to Sisi and Adi's birthday...Mardi gras party with hurricanes and grits...

Sending you special Valentines'Day kisses till we get back online for more adventures.

Monday, February 8, 2010

Nervous Mama

Achilles Tendon Lengthening
My daughter who is 25 months is going to need a TAL (Tendo
Achilles Lengthening). I am looking for a good doctor who
has experience in this type of surgery. Has anyone
experienced such a procedure? Any thoughts and or comments
would be welcome, regarding physical therapy, how quickly
the patient recovered.
Thank you.
nervous mama

This is the ad I placed on the Berkeley Parents Network...funny thing is Marybeth, Zoé's teacher called me today and wanted to know how everything went at Stanford...she then asked me if I was the "nervous mama" who had put an ad on the BPN...I guess, yes, I am that Nervous Mama.

On the picture: Zoé's PT is trying to let go of Zoé's hand...she has made a few steps, but more like falling into our arms than I long for the day she can run to me.

Sunday, February 7, 2010

Nip and Tuck part 1

I have actually never seen an episode of "Nip and Tuck", but I thought I would use it as the title to my new post. It has been an eventful few days with the visit to Stanford Lucile Packard's Children Hospital.
It was confirmed, Zoé will need surgery. Yes, she needs to go in for a Tendo Achilles lengthening procedure also known as TAL in the medical jargon, which I have come to know quite well myself, with its plethora of acronyms: AFO, TAL, PIP,MR, MMD, DM,CIRS etc.
In other words, TAL stands for 3 little incisions in her tendon so that, like a piece of "thread" her tendon can slightly unravel and she can then be put in a cast at 90 degrees. Then, after 3 to 4 weeks in it, she will be fitted with a new Ankle Foot Orthotics.Poor Zoé, it makes me feel so sad to know that, yet again, she needs something done. It seems endless, like there is always something. How much more will she have to go through?
I posted a message on 2 websites to ask people/moms whether they had any input on this type of surgery and what it involved in terms of recovery. Believe it or not, but a Mom from the Myotonic community site told me about her daughter Zoey who had that procedure done. She lifted my spirits a bit when she told me that everything went well. My biggest fear is the anesthesia as it can be problematic in people with MMD (Type 1). I guess we'll have to make sure we meet with the anesthesiologist during our pre-op apt to make sure he knows exactly what it entails.
Looking for other opinions, I am meeting with another Orthopeadics surgeon and I am also sending an application to Shriners Hospital for Children in Sacramento. We don't know whether Zoé will be eligible.
All I know is that I want it done soon, so that we can have her foot flat in order to plan another trip to France, as we have pressing issues there.
Time is of the essence here as much as it is over there.
How I long to go home.
With everything I have to endure, I sometimes feel that FATE keeps punching me in the face. I know I am blessed with many things in my life, but it's easier to say than to feel.
Hope this finds you all well.

Wednesday, February 3, 2010

A typical day in Zoé's life

I don't have much time right now to fill you in on our IFSP (Individualized Family Service Plan), the annual review or I should say the roadmap we use to guide us through the process of Early Intervention Services.We had ours yesterday about our goals for Zoé until the transition meeting, in June, when we decide which pre-school Zoé goes to. I thought that instead I would post a few pictures that highlight the beauty of Zoé's daily life: from riding her tricycle, navigating on the high seas of the sand box, from her daily appearance on the Food Network to falling in her toy chest...quite a sight.
enjoy! till our next post.