Latest news and other stuff...
1) Zoé is at school and I am heading out to Stanford Hospital in an hour for a Q and A session with the entire neurology department and Dr. Day, the doctor who knows everything about muscular dystrophy and more importantly Steinert.
I am eager to see what he has to say. He will talk about new found research, treatments and introduce us to the team of professionals who can help us cope with degenerative side-effects and long term chronic illness.
2) I have started wearing a dorsi-strap in my shoes, a fairly easy contraption that I insert into my shoes, when I go on a long walk, to keep my feet in neutral and avoid the foot drop. I was in denial, but I decided that it was time to face reality and help myself.
3) I am now followed by a wonderful physical therapist who was a neurologist and who just understands my body.
4) I continue Pilates with a wonderful trainer, who is so eager to see what can help me achieve better stamina and strength that she is coming to Stanford too, to learn more about Steinert.
5) On the school front, Zoé is doing great. She also has a wonderful aid who communicates everything that goes on. We are in such good hands. Zoe tends to play on her own, so the aid puts the timer on, lets Zoé play alone for 6 minutes and then calls out: "Zoé, find a friend!".
Zoé is definitely not drawn to writing, coloring, it's just too hard.
Or she has no interest in it. The aid and teachers ask her to add 3 colors to the coloring sheet and she just adds three strokes.
Yet, Zoé has an incredible memory and learns her poems in a heartbeat. So that's really positive.
6) All her therapies are going well, horse-therapy seems to be the best ones because she is on a horse and has to stay focused. There is no running away. Horses have this magical quality, they seem to understand the children that ride them. Zoé works on her core strength and balance. Riding the horse backwards and she is then challenged to look at her surroundings with a new set of eyes. Her vestibular system is fired up and it definitely helps her.
7) ADHD or not? We must investigate and monitor because Zoé cannot sit still. She can spend hours on the computer or an ipad, but when it comes to waiting for a table at a restaurant or shopping for plants at Home Depot, she will run away in a heartbeat, find a fountain and drench herself.
She scared me so much at the Farmer's Market. She was going to go in some jumping houses and as I was waiting in line to buy tickets, she disappeared. I was so panicked, I thought I had lost her forever. All these people came rushing trying to find her: "What does she look like, what is she wearing, what's her name...?" Finally we found her on top of the giant slide, unable to come down. I had no idea to look in that play structure as she had to have a ticket to get in.
"That's it, we're going home." I don't know whether I'll ever have the courage to go back to the market with Zoé.
The funny thing is Zoé has no concept of fear, she doesn't seem to have good motor planning, doesn't seem to know that she must stay next to me. She's just on her own, doing her own thing, and I am the one that has to follow her around.
8) We are off to Mendocino, up the coast for a little R and R after a long winter. Our last trip was last August! 9 months without going away. Therapies and school for Zoé, college and working for me, business trips for David and now the three of us need a break.
We rented two beautiful rooms in an amazing house with a jacuzzi.
Cannot wait to sip some nice wine by the fire and lounge around. Of course, Mendocino won't be very warm, but we have yet to discover that part of California.
Will post some photos after our trip.
Till then we say" Happy Spring" and send love your way.
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| D is for Daddy |
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| Therapeutic swing |
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| Dreamy hot bath |
1) Zoé is at school and I am heading out to Stanford Hospital in an hour for a Q and A session with the entire neurology department and Dr. Day, the doctor who knows everything about muscular dystrophy and more importantly Steinert.
I am eager to see what he has to say. He will talk about new found research, treatments and introduce us to the team of professionals who can help us cope with degenerative side-effects and long term chronic illness.
2) I have started wearing a dorsi-strap in my shoes, a fairly easy contraption that I insert into my shoes, when I go on a long walk, to keep my feet in neutral and avoid the foot drop. I was in denial, but I decided that it was time to face reality and help myself.
3) I am now followed by a wonderful physical therapist who was a neurologist and who just understands my body.
4) I continue Pilates with a wonderful trainer, who is so eager to see what can help me achieve better stamina and strength that she is coming to Stanford too, to learn more about Steinert.
5) On the school front, Zoé is doing great. She also has a wonderful aid who communicates everything that goes on. We are in such good hands. Zoe tends to play on her own, so the aid puts the timer on, lets Zoé play alone for 6 minutes and then calls out: "Zoé, find a friend!".
Zoé is definitely not drawn to writing, coloring, it's just too hard.
Or she has no interest in it. The aid and teachers ask her to add 3 colors to the coloring sheet and she just adds three strokes.
Yet, Zoé has an incredible memory and learns her poems in a heartbeat. So that's really positive.
 |
| Ozzie the horse |
 |
| Love is in the air... |
 |
| Helps me blow my 4-1 candles |
6) All her therapies are going well, horse-therapy seems to be the best ones because she is on a horse and has to stay focused. There is no running away. Horses have this magical quality, they seem to understand the children that ride them. Zoé works on her core strength and balance. Riding the horse backwards and she is then challenged to look at her surroundings with a new set of eyes. Her vestibular system is fired up and it definitely helps her.
7) ADHD or not? We must investigate and monitor because Zoé cannot sit still. She can spend hours on the computer or an ipad, but when it comes to waiting for a table at a restaurant or shopping for plants at Home Depot, she will run away in a heartbeat, find a fountain and drench herself.
She scared me so much at the Farmer's Market. She was going to go in some jumping houses and as I was waiting in line to buy tickets, she disappeared. I was so panicked, I thought I had lost her forever. All these people came rushing trying to find her: "What does she look like, what is she wearing, what's her name...?" Finally we found her on top of the giant slide, unable to come down. I had no idea to look in that play structure as she had to have a ticket to get in.
"That's it, we're going home." I don't know whether I'll ever have the courage to go back to the market with Zoé.
The funny thing is Zoé has no concept of fear, she doesn't seem to have good motor planning, doesn't seem to know that she must stay next to me. She's just on her own, doing her own thing, and I am the one that has to follow her around.
8) We are off to Mendocino, up the coast for a little R and R after a long winter. Our last trip was last August! 9 months without going away. Therapies and school for Zoé, college and working for me, business trips for David and now the three of us need a break.
We rented two beautiful rooms in an amazing house with a jacuzzi.
Cannot wait to sip some nice wine by the fire and lounge around. Of course, Mendocino won't be very warm, but we have yet to discover that part of California.
Will post some photos after our trip.
Till then we say" Happy Spring" and send love your way.
 |
| Loves that dog |
 |
| Loves La Farine and their butter croissants |
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