Tuesday, June 24, 2014

Thank you Dear Ginny. Letter from a wonderful family friend that brought tears to my eyes.

Sarah DEAR

I am very pleased you sent me a reminder to visit your Blog site. I tried to write a comment, but I don't think it worked, so I'm sending you my comment via email, so I'm sure that you will read it one day!

I don't know who is the biggest "Trooper" in your family : Zoé or YOU!!! You both are extremely incredible people, and I admire you both beyond words!

You are an example to others, you shine like a lighthouse to give hope to others that they can somehow find themselves in a better place! You and Zoé are incredible fighters, you don't give up, you are very positive and you only "sigh" when things are difficult--- You don't "cry", you just "sigh"!!!

I wrote all this, in different words, and then the blog comment disappeared, so I'm re-doing what I wrote on the site, but here, on an email, for your eyes only, or if you want, you can publish this on your site.

What I really want you to know is that You are incredible, you don't shirk work, you are very motivated, and it is surely a very hard road to walk due to the amount of work, effort and stress entailed in helping Zoé to be the "best she can be", and "grow the best way she can".

YOU are a WONDERFUL MOM, and you deserve the very best yourself !!!

I hope the heart-monitor (holter) gave helpful information to the doctors, and that you will soon be getting the help you need for yourself. As you said in your blog, your illness is a sneaky, dangerous thing, and I'm glad the doctors could diagnose something to explain your state of great fatigue. Now I hope they can also suggest a way for you to get back some of your own energy....

You and Zoé are in our hearts! You may sometimes feel that people are not "present" for you, but if there is anything at all we can do to "lighten your load" all you need to do is ask.  We think about you very often, we talk about you very often too, so if there is anything at all we could do, just give a whistle...

I'll close now by saying "Bravo" for all you have done, and for all you do, and for all you will continue to do for your Zoé. She is a wonderful child, and this is in great part because she has a really wonderful mom!!!!

Take care, dear Sarah. We are very much looking forward to seeing you here this summer. Our house is ALWAYS open, just come on over, and if we have time before you leave for Soave, we can even organise a "play date" for Zoé and Anna's kids! Here in St Renan, there is a "cabin" of bamboo branches, and a swing set, so if you want to come over, it's like a mini play area for kids!
All my love,

Friday, June 20, 2014


I don't know where to start.

Counting the days till we touch the tarmac on French soil. France where Zoé can just relish the quietness of summer days, the glorious beaches of Brittany, the small cobblestones streets of Sauve in the South of France and just enjoy some respite from therapies.

Our spring has been one hell of a roller-coaster...

We saw the orthopedist surgeon at Shriners who decided that no surgery would be needed for Zoé, but that definitely braces would have to be worn everyday.

Gone are the sparkly ballet flats I can picture on Zoé. That will never happen. (Sigh)
Oh well, it's ok, let's move on.
The surgeon said that as Zoé's calf muscles are tight she now tends to walk on tippy toes.
If he cuts the achilles tendon, then she will have to use her leg muscles in a way that will compromise good posture and gait and Zoé will then have to wear braces for ever.

The second appointment was the neurology clinic at Stanford with Dr. Day and his team. I was proud of myself for  I decided that I did not want to see the Speech pathologist, nor the OT or PT. I am an expert at what Zoé's challenges are, I don't want to be charged an arm and a leg to have people ask me what we do and simply telling me to continue.

So neurology came and went and then not much more was brought to the table. There is no cure, no treatment.
It hurts.
The constant reminder of the fact that our disease is an incurable one, and that the slow degeneration keeps creeping in on us. Me, actually more than on Zoé as she is still growing normally. I dread to think about the future...

My lack of stamina has been increasing drastically. My general practitioner was dumbfounded when he saw that my blood pressure was 72 over 40, he was surprised I had not fainted yet.

So I decided to go see my cardiologist who prescribed a holter monitor for 14 days to monitor my heart rate. He mentioned the possibility of a pacemaker and that's when I hit the wall, when I had not choice but to face the demon. Everyday is a struggle to get out of bed and to muster the energy to care for Zoé.
I keep chugging along, going on walks, going to the gym, the pool, pilates, acupuncture just to keep that body moving.
I am actually going for my electrocardiogram this afternoon.
The title of this post says it all...

The Mind Institute in Sacramento is the temple of ADHD. We suspect Zoé to suffer from it. What else is new? When will it end? 30% of kids with Myotonic Muscular Dystrophy are on the autism spectrum and have ADHD.

The highlight of this roller coaster was our trip to Salt Lake City, where we were greeted by an amazing team of doctors, caregivers, and nurses. It was surreal to see how dedicated and caring these people are. Zoé is a trooper for she grabs anything that is thrown at her: speech analysis, occupational therapists, physical tests, Dexa scans, and shots (blood draw). We stayed in a hotel and enjoyed our room and king size bed for naps and microwave pizza for dinner. I could have used a glass of wine or two, but I got Zoé to decide what she wanted to do. The flight there and back was great. I left feeling elated by the fact that in some minute way, we have added data to a possible cure one day.
Another little 8-year-old girl also participated in the study and was a striking reminder of how this demon affects kids. It helped me put my life into perspective and to realize how lucky we are that Zoé is doing amazingly well.

So that was our spring.
Now Zoé is at camp from 9:00 to 1:00pm everyday. Learning about bugs, their reproduction, habitat, doing art projects and reading books.

Zoé performed really well in her horse show in late May and will continue to ride King David.

W e have started Kumon, a reading and math program. Zoé has to do 30 minutes of HW everyday. I am really happy with it as it provides structure and discipline. Zoé doesn't really mind doing her HW everyday, and we are starting to see slight progress.

Swim lessons everyday are added to the summer regimen.

On a last note, I have to admit that I was amazed at the research program in Utah. I had to fill about 10 lengthy questionnaires on quality of life, etc. And then they questioned Zoé.
Here are a few questions they asked our 6-year-old darling for you to ponder and reflect upon.
"Zoé do you feel different from other kids?"
"Can you play tag with friends?"
"Do you find it difficult to make friends?"
"Do you think you look different from other kids?"
"Does it make you sad?"
"Is it hard to listen to your teacher and sit still?"
"Is physical education difficult?" etc.
and for each question they offered Zoé a choice so she could decide whether it
is was a  big problem or a little problem.

It was both heartbreaking and enlightening to hear what Zoé had to say about her quality of life.

The Dexa Scan

The Dream Team at Salt Lake City Hopsital

Tami, my favorite nurse

King David

Buddies at Shriners Hospital

Enjoying the King Size bed

Utah here we come! (Airplane)

Zoé's self-portrait