Kindergarten

Excitement was palpable as we dropped Zoé to Kindergarten this morning. Excitement for the new adventure, a realm full of new friends, new words, new books, new exercises, and new set of teachers.
She looked so cute with her backpack on, her bunny shoes (braces) in place, her purple glasses and the mischievous look in her eyes. She waved us goodbye as we watched her get her name tag and cross the threshold into her new world.

This was this morning and I know I have left you behind dear bloggers. As my uncle Said:"Your last post dates back to June 2nd". Wow! A lot to catch up.

We spent an awesome summer, with Grammy Gina and Aunty Wendy visiting, then Nanny and Matt from France.
Zoé was at summer camp for a month as she was enrolled in her extended services for another 4 weeks at the end of school.

We left for France on July 19th and returned 3 days ago. France was amazing as our little mermaid played in shallow pools on the beach, built sandcastles and jumped in waves.
We then had glorious play dates with cousins and friends.

We crossed France in 3 days and spent another 2 weeks in Sauve a small medieval village nestled in the foothills of the Cevennes. An amazing adventure at Nanny's house, with cousins, friends, knights and princesses (Yes, they do a weekly medieval tour of the village in the summer). Zoé couldn't believe her eyes when, out of the blue, three knights walked down the street.
We relished the hot weather and jumped in the rivers nearby on very hot days.
We enjoyed the great food and barbecues, the cousins and friends.
Zoé mastered the zip-line in the trees and the stair climbing all over the place. She marched up and down the staircase in the Grotto Des Demoiselles with help, but inspired by her cousins.

The trip back to Brittany was long, and we decided to drive for 2 days, 14 hours as opposed to three days.
Zoé again was a real trooper, never complaining, sleeping and singing along to the tunes of who else but Anne Sylvestre, our favorite singer.

As far as behavior is concerned, things have not changed much and Zoé needs to navigate the proper behaviors and social cues she faces on a daily basis. This year, on top of all her therapies she will be involved in "social lunches" to learn socialization and social emotional attitudes towards her peers.
We faced a bit of bullying this summer at camp and I told Zoé that the girls who told her to "go away for ever" were simply not nice and didn't deserve her attention. I told her teachers who dealt with it appropriately, teaching the kids that camp means making friends, being safe and inclusive.
I know bullying will be part of our lives, we will deal with it when we need to address it.

So here it is, friends. I add a few pictures and will keep updating the blog as much as I can.

Uncle G

Extended Family

chickens and eggs

Pool time

At Sarah and Helena's house

Architecture 

Uncle Isaac

Le pompon

Little Mermaid

Knighthood

Swinging

Tree climbing

The scuzins

Daddy-o

French Market

If you take my spot, take my handicap

Beach Bum

Fish

MDA's visit to Google Headquarters

With Uncle Matt

Heart monitor

Sensory play

Auntie Julie

I had to share this....and how our trip to Holland has changed.

Why having a child with a disability is not like being sent to Holland.

This parable bothers me. It bothers me a lot. While it is certainly uplifting, it makes me uncomfortable, because it denies a central and in my mind, undeniable fact about the experiences parents of children with life altering difficulties face: It is much harder and more difficult to parent a child with a disability than it is to parent a neurotypical child with no health challenges.

In my mind, a more accurate analogy would be this:

Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.

You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.

Some how you manage to make it to the ground.

At first, you just sit, clinging to one another, checking to see if you have any broken bones. Once you're done thanking god that you're still alive, you dust yourselves off and look at the terrain. You look at each other and reassure one another that you're going to get out of this place.

Your first few days in the desert are exhausting. Just getting your basic needs met feels overwhelming. You feel alone, terrified and honestly- You're not sure if you're going to make it. Sometimes you fight, not because either of you is doing anything wrong- but because you're both tired and frustrated, there is sand everywhere, not enough water and there is no one else to yell at.

After many days of struggle, you finally make it to a village. The first thing you find out when you arrive, is that this settlement is made up of people who also got dumped out of a plane. This is what they tell you:

We are on the moon!
No, this is Arizona.
No, we're in the Australian Outback!
It's the airlines fault.
No. It's the flight attendant who pushed us out.
Oh! Another passenger pushed me out. How did that crazy person get past TSA?
There is no hope of rescue.

Wait! There is a rescue effort underway.

There is an 80% chance you and your treasured partner are going to crumble under the strain of this experience.

No, you won't, this experience will make you stronger!

The desert is a gift!

No, it's not. It's a war and war is hell!

Trying to make sense of this, you look around and say, "How did this happen? What made our plane go off track, when all the other planes made it to their destination just fine? If only we'd flown on a different airline. Who is right? Are we going to end up divorced or not? Is there a rescue party coming? Why are all of you talking at once?

Everyone in the crowd starts to shout LOUDER. Their voices jumbling into a unintelligible cacophony . Then, it dawns on you that maybe there are no right answers, because no one really knows. This is more terrifying than any answer you could have heard.

So despite being overwhelmed, despite struggling for the basic necessities and despite not knowing how you got there, you get on with the business of living your life. It's hard. It makes you angry, not at anyone in particular, just angry because it wasn't supposed to be this way. There are moments when the absurdity of it all makes you laugh. You and your partner discover that there are gorgeous sunsets in the desert and here, the stars shine with crystalline clarity. You smile a little more often and you realize that going to get water every day is doable once you know where the water hole is. You're scared sometimes, yes, but not as often as when you first landed. There are days when you wake up and wonder how you are ever going to make it through. At times, you're lonely for all the friends you had who went to Paris. Sometimes you don't recognize this person you're becoming or the person your partner has transformed into.

The desert is your new normal and once it becomes familiar, it's more understandable. You know which plants are poisonous, how to get sand out of your sleeping bag and how to be patient when your partner is screaming "ALL I EVER WANTED WAS A CROISSANT!" The path to the water hole is well worn. You learn how to handle your own meltdowns and you figure out that there are some wonderful people here in the village. Your skin gets toughened by the sun, and you realize you don't need Starbucks to get through the day.

Sometimes at the end of the day, as you gaze up at the endless sky, you wonder, "What would Paris have been like?" But then you realize that the desert has become your home- and you wouldn't give it up for the world.

From the "life with talking trees"blog.

"I do not intend to tiptoe through life only to arrive safely at death."

May 2013 Miscellaneous

Hodge-podge of news and pictures.

Zoé's last week of school is upon us and an exciting summer is ahead.

Nanny and Uncle Matt's visit.

Summer camp at Beach School, Zoé's new school where she will be entering Kindergarten in the fall.
Extension of services for a month: Speech, OT and PT as well as Horse Therapy.

Zoé has now officially graduated from hippo-therapy to therapeutic riding, where she will no longer be in the care of a PT.

We went camping for the first time with Zoé. She loved the set up, the barbecues, the marshmallows, the fact that she could sleep with us, of course, and the sunset over the Bay.
She loved cracking pine nuts on a rock, and hiking for a bit, with a friend's service dog (the highlight of the day).

Zoé will be getting her bunny shoes next week.

Cardiology appointment early July.

Choir Recital tomorrow.

So here are a few pictures for you to see how busy our little bee has been in the past month.

Magic the clown at Shriners Hospital

Casting of the feet for new Bunny Shoes

Funderland after the hospital, the treat!

Grammy Gina visiting from NYC

Maman's girl

Anny the horse

Trying out the bike at Sydney and Adair's house

School picture

Love the camp site

Resting on the tarp

Horse show 2013

Zoé's first Mandala

Ze Trophy!


ENJOY THE PIX.
LOVE FROM OUR SIDE OF THE BLOG....

DNA and the meaning of the three letter word...

I have been thinking a lot about the meaning of one's DNA, the 23 pairs of chromosomes and how they can impact your life forever.
23 little figments of who we are, 23 pairs, why not 24? Pair numbers suit me better.
Anyway, I have been thinking about Chromosome 19, that's the one, the culprit, the one that triggered everything that's been going on in our lives and how it has paved the way towards our destiny...and what we'll make of it.

Another acronym, our life is full of them:
DNA should mean Definitely Needed Answers.
PPD-NOS--Pervasive Developmental Disorder, Non Otherwise Specified...hum means that you are just pigeon-holed into something, but they are not too sure what it means.

ALB--Autistic Like Behavior, what kind of behavior? No Zoé doesn't flap her hands, no she doesn't avoid your eyes, yes she speaks, a mile a minute, in two languages, sings like a soprano, imagines stories that have no end, reads books out loud like Miss Booksie, invents games with her own rules, plays boardgames and card games all day, and yes, perhaps sometimes the behavior is  not appropriate, but does that mean that you are labeled for life?

We already have our genetic make-up, with its faulty chromosome, and then they add this PDD-Perfect Desired Daughter-NOS: Nonetheless Overly Smart!

Well enough wandering and wondering, let's get back to reality. We've had three appointments in 2 weeks:
Shriners Hospital: where we saw Dr. Rab, Zoé's foot surgeon who was ecstatic when he saw her, "No she won't need another surgery", one down, whoohoo.

Dr. Macdonald, the rehabilitation Doctor was amazing, so thoughtful and caring.
Wants another Gait Analysis, to keep monitoring Zoé's walking, which is still slightly twisted, but hey, as the surgeon says" if it enables her to do what her peers do by compensating, all the better for Zoé."
We casted her feet for the umpteenth time and Zoé chose bunnies for the SMOs she'll be getting in 3 weeks, oops, another acronym, I should fill you in, though you might know by now...SMO= supra malleolar orthotics,....a fancy word for braces she'll be wearing all day, but hey with bunnies, everyone will envy her, or so I dream. I know I shouldn't be sarcastic, but sometimes it helps...

Then we went to Lucille Packard's Children Hospital at Stanford where Zoé had her annual muscular dystrophy clinic with Dr. Day. My GOD! He has been working on Myotonic Dystrophy for the past 30 years, so he knows quite a bit about the disease and how it can impact your life.
He spent almost 90 minutes with us!!! Do you know of any other doctor who would spend so much time with their patients?

He was quite pleased with Zoé and he wasn't surprised by the new diagnosis: the dreaded PDD-NOS. Most kids with MMD-Steinert-Type 1...might as well give you the full name....have autistic-like behaviors, mainly due to their lack of socially appropriate behaviors. Zoé tends to play on her own, at school her aid monitors her "alone-time", which could also be due to the fact that she's an only child, that she's been interacting with adults her entire life.

Maybe loving everyone is inappropriate: Zoé tells the horses 'I love you", the therapists, the teachers, the aids, all the wonderful, amazing people that she is in contact with everyday, that she LOVES them, and she means it, too.

The one thing I am thankful for, the silver lining, is that Zoé has opened doors I would have never gone through. I have entered an amazing world, a realm that so few people know about,  the Kingdom of Special Needs, of IEPS, of diagnoses, of hardships and blessings, of tears and laughter, of friendships that have forever changed my life, of support groups and tissues, of red wine and cheese plates, but mainly of a journey I hadn't come prepared for, but that I have embarked upon, with a light handbag that is now a trunk full of ideas, newfound tricks and tools necessary for this voyage of life.
Feeling empowered and arming yourself are indispensable.

Back to Stanford, at the clinic we met a speech pathologist who said she had a hard time understanding Zoé's speech that she defined as nasally, and that we might need to consider a device, well hello! Not in my book!
The occupational therapist we saw was nice, but didn't offer anything I didn't already know.
The physical therapist did recommend these SMOs and asked us to keep stretching Zoé's feet for they are really tight. That's the muscle imbalance that keeps kicking in...

Yesterday we saw Doctor Young at CCS (California Children's Services) and she was astonished at Zoé's progress.
She hadn't seen her in a year, so obviously the hard work has paid off. She came with her therapy dog that Zoé fell in love with instantly. Nico is a gorgeous fur ball, so sweet and gentle. The doctor was amazed that Zoé immediately approached the dog by showing her fist, for the dog to smell her and decide whether or not she liked Zoé. Then she asked the doctor if she could pet him and what his name was. These are the strategies we need to keep teaching Zoé in her daily routines. Teach and Model are the key words. One doesn't outgrow PDD-NOS, but one can strategize game plans to help the day to day life.
Telling Zoé that loving is nice, but that when it is time to listen, it isn't time to give her teacher a hug!
The doctor was also pleased about Zoé's sensori-integration therapies and our use of the 4 Zones of self-regulation. I often remind Zoé that the green zone is where it is at, that one doesn't want to go into the yellow or red ones for they are treacherous terrains, full of booby traps and time outs...

I am hopeful that we are well-equipped for what lies ahead.

Cutting play doe with scissors

Balance beam

Dogs--I love you!

Jaccuzzi

Daddy Time

Jumping on numbers when they light up

Feeding the horse some lettuce.

 Writing letters in small boxes

In the meantime, we send a virtual hug. Hope it is appropriate ;-D

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!

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