Thursday, April 25, 2013

April 25th, 70.

First of all, I would like to thank my wonderful friends who wrote me amazing inspiring emails about the blog. Thank you from the bottom of my heart. It compels me to write more and to know that in a small way I touch people and they return it by touching me. So, thank you!

Today is a very special day, special in many ways, bittersweet, I should say. Dad would have turned 70. I cherish the memories and wonder how we would have celebrated?
What made it special for me is that we all wrote virtual birthday wishes to dad, as a family we sent one another emails about his turning 70 and celebrating this big milestone.

To go back to my last post, our trip to Mendocino was fantastic. We definitely enjoyed the rental house, where the utmost relaxation was provided by the jacuzzi. Mornings and late afternoons we soaked up the sun and the heat, surrounded by pristine redwood trees and peaceful serenity.

It was wonderful, and yet tiring also, as Zoé kept us going, running around, touching everything, etc.

The positive side of it all is that she slept in her own room and we woke up to coffee and card games with her every morning. It was a nice way to slowly get us going for the day ahead.

We enjoyed Fort Bragg and its desolate streets, the drive along Highway 1, and if I have to choose, I'll say that it is even more beautiful than Big Sur, at times. It is more rugged and quaint, and the small villages that dot the way are fun little haven for the wandering travelers.

We came back after a 4-day break energized and ready to conquer the last stretch of school before summer break.

Zoé is graduating in June from Horse Therapy to Therapeutic Riding, so she no longer will have a PT at her side but will start "reining" the horse and will probably start using a saddle. That will be determined by her new trainer.
Zoé was so happy to be graduating, that she shouted to all the volunteers at the ranch: "I'm graduating, it's my destiny!". Everybody cracked up! I swear, I don't know where she gets these ideas...

Zoé did ask me when she would graduate from Speech Therapy, and I told her that for now she still had to practice her sounds. Unfortunately for Zoé, I think Speech will be a long process. She still has to work on articulation, and bilabial sounds. As she tries to compensate, she tends to use her tongue to make her Bs, Ms and Ps, and we keep telling her that the tongue shouldn't be used. But when you start this pattern it is really hard to undo these tricks.

On the potty front, things have been going great lately. Still a few leakages, but Zoé now runs to the bathroom when she FEELS stools coming. We are so proud of her. She gets her little M&M and told me this morning:"So we can go back to swimming." If she continues that way, sure enough we'll start swimming again.

On the arts and craft side, I found an amazing game board for Zoé in order to develop coloring and thus fine motor skills. It is based on The Blue Horse by Eric Carl. You have a palette in front of you, a spinner, some crayons and 3 little drawings to color. You spin the arrow and depending on where you land you have to use that color on a small part of the drawing and so on and so forth. Zoé loves it because we play together, the drawings are small, so she doesn't have these daunting-sized drawings to color and it is fast paced as every body needs to be coloring with the other players. Her favorite part of the game is when she spins and lands on the "exchange drawings" slot and then she gets to finish coloring one of my cards and me hers!
She is also getting better at puzzles, but again we start with very basic ones, so she doesn't get frustrated and thus it compels her to do more. I try to play along side and make up stories. Puzzles are really good for observation, strategy, and attention and again fine motor skills!

On the medical front, we have two upcoming appointments: neurology at Stanford and Rehabilitation at Shriners hospital in Sacramento.

As for me, I work the core, core and nothing but the core. It is hard and strenuous, but I try to not give up.
My Pilates instructor is wonderful and she just knows how to adjust exercises that are too hard for me.
We've both noticed that two of my toes on both feet are now completely atrophied, which probably explains why walking is harder now. I use a spiky ball to awaken my feet and stimulate what ever muscles are left.
The neck is still very weak and challenging to hold up. I sometime jokes that I wish I were an "air head", maybe my head would be lighter ;-)

Well, that's it for now dear friends.
I am writing on my work computer so don't have access to my pictures. Will post some in a little while.
Thank you for reading!

Wednesday, April 10, 2013

Short listing

Latest news and other stuff...

D is for Daddy

Therapeutic swing

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