Wednesday, January 26, 2011

A trip down memory lane...

for Zoé to always remember her grandfathers.

Tuesday, January 25, 2011

The Scuzins in France

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Yesterday was a bittersweet day as we were told that Zoé's services at CCS (California Children Services) would end. It's kind of a double edge sword as you definitely want your child to stop having services, because then it means that they are doing great, but it also means the end of extra care and comfort, of dedication on the OT and PT's part.

We are getting tons of extra therapy elsewhere, but we are now turning the page on 2 years of care at CCS, where I went through the motions, learning tons of techniques to help Zoé grow into a strong and busy girl, who never ceases to amaze me.
Transitions are hard to take. PIP was one, and the loss is huge.
Now CCS.

We are now moving on towards new horizons, new prospects, new projects, new ideas, new teachers. I guess it goes with the new year.

Zoé had an amazing PT session this morning. I don't need to attend the therapies anymore, which is quite a relief, but this morning for her real 1st PT session I decided to stick around to see what new techniques I could use with Zoé. I was flabbergasted. Stacy, from STarfish Therapies (The place we used to go to, on the Peninsula) has a really intuitive way of working Zoé's body. She just knows how to make PT fun, and hard work. It must have exhausted Zoé. I would have been flat out on my back had I done what she did for 45 minutes nonstop:
wheelbarrowing her way from one side of the room to fetch little toys, sit-ups, egg-shaped body movements, climbing on little step stools to place toys in their right place, sitting on a ball pretending to fish and twisting her body side to side, front to back.
I came out of there pumped up with new found energy. Motivated to do the same at home.
I always feel good about new invigorating activities I can use to help Zoé get stronger.

When our beloved OT at CCS told us it was over, she mentioned how it is important to focus on what Zoé can do, for therapies tend to focus on your child's limitations. She is at an age where she can start using tools: scissors, blunt knives, tweezers, pinchers, clothes pins to strengthen her fingers. Making it playful Zoé will increase her ability to do things without even noticing that it is hard work.
Don't focus on limitations, but look into what Zoé is capable of doing, what she masters, what she loves to do. She is at an age where she now has a sense of who she is. We need to give her a sense of achievement. For isn't it the way we grow? Nurture versus nature.
I need to work on developing concepts about Zoé herself and how she can then be proud of what she manages to do.
In terms of physicality, stepping on a little step stool is really hard for Zoé. we take things for granted, we run up and down stairs without even thinking about it. For Zoé a flight of stairs is a mountain. Mount Everest!
A step stool involves going up, hence using strength, which she tends to lack, firing off her quadriceps, and going down involves control. The same is for sit ups. All muscles tie in together, it goes up the chain: abdominals, core, shoulders, hands.

So this is it. What the new year has in store for us. The one hard thing to take in was what the OT said, how Zoé's tone might decrease, how perhaps in the future she will find herself weakened by the disease. I won't go there.
It scares me.
I just want to take it one day at a time.
or as Ann Lamott the writer said, "Take it bird by bird", when she was facing the daunting task of writing about a project on birds, it was the night before it was due, and she hadn't done much.
I will "take it muscle by muscle."
I add pictures of Zoé's 3rd birthday which was a real blast. And the cupcakes were so yummmmmy!
And the Queen of the Galette des Rois.
See you soon on the blog.

Tuesday, January 18, 2011


Caregiver month has come and gone, the holidays well celebrated despite a big gaping hole at the dinner table, and 2011 is now in full force. Ready to turn the page on a difficult year, looking ahead towards new promises, and more achievements to fulfill.
I take this opportunity to wish you all a HAPPY and HEALTHY New Year, may all your dreams come true and may we find peace and solace in the comfort of friends and family.

Where have we been since November 24th, what have we done?
Well, we went to France, which we had not really planned at first. Having gone 5 times over the course of a year, we thought we'd chill at home and rest. Yet, this was our first Christmas without Dad and the whole family was going to be there, so we decided to surprise everyone by taking off on December 15th.
Zoé was delighted to see her cousins and aunts and uncles and being once again at "Papy and Nanny's house".
Santa Claus brought her many goodies and she is now a fan of boardgames.

It was good to not be in therapy, not to be driving places, just being in the moment and reconnecting with a little girl's routine, playing, reading, drawing and watching little videos.
Zoé settled very well, we didn't suffer too much jet lag, which was a dreadful thought. However, as usual, she only slept 1 hour from Take-off in San Francisco to Landing in Brest, 16 hours later!
She collapsed in the stroller and all the way home, where we surprised Uncle G and Julie, as well as Uncle Matt.

We did see the osteopath twice and he was amazed at Zoé's progress. She is now a chatter box. We do have to really work on articulation though, for people have a hard time understanding Zoé. The lack of muscles in the face prevent her from really being understood all the time.
The osteopath worked on her neck muscles that she's been complaining about as well as her liver and intestines. He felt an imbalance there and tried to realign things in order for Zoé to have regular BM (Bowel movements). Indeed, constipation is another one of the side effects of Steinert, and it can really be debilitating to deal with it every day.

After the holidays, once everyone had gone home, we felt a little depressed for the house became suddenly quiet, without the commotion created by all the cousins. Dealing with the absence of dad, trying to adjust to it was quite overwhelming so, on a whim, we decided to go look for some sun and we eloped to...of all places...Tunisia! Yes, we booked a hotel package on line, went to bed at 11H45 pm on New Year's eve and drove to Nantes the next day. We had a wonderful time visiting family in Nantes, Jacques, Toula, Maria, Bertrand and meeting cousin Alexandre for the first time. We flew off to Djerba the next day.

We had been told that we might be cold and that it might be windy on the beach, but we were really lucky, it was gorgeous everyday, 25 degrees C, bright blue sky, sunny days and the best time ever!
Zoé was the ideal trooper, she became the Queen of Sheba at the hotel, everyone knew her by name the next day and for a week she was treated like royalty. She made many new friends, Axelle, Ouss and Najib, the staff was extremely friendly, we went swimming every day (in the heated pool), Zoé went horseback riding on the beach and in some olive tree groves, we went on sightseeing half day tours, went 4 km from the Libyan border, danced every night, ate scrumptious Tunisian specialties, and we even managed to get Zoé onto a regular nap schedule!
All in all our "Thelma and Louise" trip was a total success!!!
We hope you'll enjoy the pictures.
Coming home was a breeze and we got to have lunch with our dearest friends in Auray: Anne, Caroline, Erwan and the kids: Bleuenn, Malo, Sidonie and Celeste. We celebrated the galette des rois with them as well as with Alain and Sandrine and their two daughters Clémentine and Noélanie.

We are now back in California after a month long treck. It's been good being back with Daddy and settling back into the good old routine of therapies and school. Actually, this is the perfect segway to the title of this post. I don't know why but I feel overwhelmed.
Zoé graduated from our little cocoon, AKA PIP, and I feel now alone in this world of normalcy, where I face people who aren't aware of what we go through every day. The stares every time Zoé falls, the "what happened, Mommy" a little girl asked this morning when she saw Zoé trip over her big clunky shoes. I know I should feel blessed, but I have a hard time facing the typical moms of neuro-typical kids who don't have a clue of what life with MMD entails. Zoé has a helper in school and I was wondering whether that would stigmatize her or not. I was told that at her age, kids don't notice things like that. I know we'll have to face this once she enters 1st or 2nd grade. But that is what I am not ready to face, I don't want to have to explain why Zoé is different, why, when you take a picture and tell her to say "cheese" she cannot smile, why her mouth is always open, why she wears glasses, why she walks "funny". Zoé is unaware of my fears and concerns and I want to spare her for now, but we'll have to face things and cross that bridge when we get to it.

I am in a phase where I am ironing things out, looking at the difficulties ahead, but also reminding myself that there are triumphs and glorious times, when we can relish the sunny days at the park and take things with a grain of salt.

I think I am also overwhelmed because Zoé's schedule is now more or less in place and there is a lot of juggling and driving around:
Monday: French School in the morning
Afternoon: aquatic therapy
Tuesday: Preschool with physical therapy session in the morning
Afternoon: speech therapy
Wednesday: Occupational therapy at 8:30 am, then daycare till 5:30 and perhaps PT then.
Thursday: Preschool
Afternoon: occupational therapy at 12:45 and then speech therapy at 5:00.
Friday: French school
Afternoon free for now, but might have to add another therapy....

I have a full on schedule, and not much time to myself. Thank goodness I have the blog to pour out my fears and dreams.
Hope this finds you well wherever you are.