Physical Therapy with Beauty and the Beast

Zoé's physical therapists always have incredible ideas to get Zoé's abs and trunk control working.
I am in awe.

Goofing Around

Belonging to the Tribe

Yesterday was another Tribal meeting (using Lilian's word), I love it, a meeting with all the other moms with whom I share the Special Needs Journey. We try to gather once a month in a ritualistic way, around yummy snacks, good wine, laughter and tears, to vent or rage, to share and smile, to just be in the moment, when our lives have so much at stake.
This tribe: my dear, loving and caring mothers of kids with special needs. We share ideas about therapy, about understanding diagnosis and whether that is important, about how to work our way around the system; we check in, in an informal way, we ask questions and I usually come out of these get togethers pumped up with renewed energy and vitality.
We share our fears, and yesterday we pondered the fear we have of "what will happen when we are gone?", that is a common fear we have. "Who will take care of our loved one?", "of our defenseless, fragile, different, weak, child with special needs?". One of our friends was crying and we kept telling her to live the moment, "take it bird by bird", one day at a time, even if it seems trite, we HAVE NO CHOICE. Only the future will tell for itself.
Zoé's diagnosis (sounds better than disease) is so freakish, NO ONE knows what she will face in a year, ten years or twenty. And for that matter, I have added stress, for I don't know what I'll become?
But we need to live the moment, to learn to cherish every smile, moment of joy, but also the tears, the frustrations, they are all part of the package deal.
One of the ways I have of finding a reason for things is to believe that we were dealt these cards because God had it planned for us, He/She knew we could handle these journeys. Well, as Lilian said, and I thought it was hilarious, God could have sent us flowers and a bottle of wine, but no, the challenge is way different.
An eerie moment occurred at Zoé's French school when I picked her up on Friday and her teacher showed me her drawing.
The teacher had asked the kids to draw something in a white bordered square and she then asked the kids to explain their drawing and tell the story. She then wrote them out under the illustrations.
Zoé's drawings (Scribbles...she is not really into art) are always about sick people or monsters that fall and hurt themselves, or break a leg. She always wants me to draw a crying baby and then she kisses the drawing and I am to draw a smily face . Her characters are always sick, she loves to play doctor. I guess it is her way of externalizing her life. I thought to myself, well of course, it is her life!
Every since she was born she was sent to the NICU, to be analyzed, to be observed, to be assessed. She knows what challenges she faces in her own way. I dread the day she'll ask me why she is different, why she cannot jump or run as fast as her classmates, or go up stairs without holding on and hoisting herself up the handrail...but again, we might not have to explain...Zoé might never ask these questions...Be in the moment is all that matters. Cross bridges when we get to them...make lemonade when life gives you bitter and sour lemons and don't fret...easier said than done.
The school year is almost over, we are in the last stretch before a filled summer schedule.
I asked for Zoé to get ESY (Extended School Year) and it was approved. She will go to summer camp for a month, Monday to Thursday from 9:00 to 12:00, she'll get OT until mid-July, PT and Speech for the whole summer. I was so afraid that she might get a whole chunk of time without services.
Her speech is getting way better. The speech therapists are amazing, they use grape-flavored gloves to stretch her mouth and lips. Zoé cues herself to close her mouth, by putting her fingers to her lips, and really tries hard to pronouce her bilabial letters: M, B, P and all words ending in m, for instance. It is getting easier for Zoé to pronounce words such as magic, than Ham, for when the word starts with the letter you automatically start by closing your lips. When you pronounce a different sound and have to end that word with m, then it gets trickier.
Potty training is still not in place. Zoé goes on and off, and then doesn't care at all about being dirty...I guess physiologically it is harder because she has low muscle tone. Could it be because she doesn't feel it when it comes? Or perhaps it is because it is too much work, and it hurts...August is when I will implement the mission: bare naked for a month!!!! we'll try and see, but I don't want to add pressure and make it even worse.
Well, dear friends, and avid readers (yes, all of you who tell me in emails that I shouldn't stop writing because you love to follow our adventures) we wish you an awesome weekend and "happy" Memorial Day (maybe I shouldn't use the word happy) weekend.
We get three days off, hurray!
To Caroline, our dear friend who left today we wish "Bon voyage!" (I got to spend a night in San Francisco this week, and paint the town red...well sort of, we just had dinner, drinks and a comfy room at the Marriot Hotel)
We send much love your way.
Ps: I'll just briefly add captions to the pictures:
We took Zoé to the floating houses in Sausalito and used a shopping cart to stroll down the passage ways (I had forgotten her stroller!!!).
Zoé wears a tiara and gets ready to see her first play "Cinderella".
Zoé loves money machines...future casino gambler, I am afraid...

Stress and Frustration...

Stress and Frustration...what can it be???

Well dealing with the red taping nightmare of insurance companies....I am trying to see, in vain, if our insurance cie will cover hippo therapy, or equine therapy, or horse therapy.
It seems like I am asking Sisyphus to roll his big gigantic ball over the mountain and back again!
It looks like it's not going to happen, not the ball, the therapy!
I have Zoé's diagnosis code, I have the procedure quotes for PT on a horse, but for the woman on the other side of the telephone line, no horse is mentioned. She happened to be the nicest person I've ever spoken to though. She even told me how sad she felt that I couldn't get what I wanted for my daughter.
It is a constant battle.
Believe it or not, I've come to be pretty good at this and I even have a system I keep to get everything on paper.
I have my own little note book, where I write:
The date, the time and the person I spoke to. Their extension. At the end of our phone conversation I ask a tracking number for the dialogue we exchanged, then I ask for the pre-certification number for the service I am to have provided. It's a full time job and it gets me sooooo frustrated that I am happy to have this outlet, so I can vent, and huff and puff. Like the big black wolf and the three pigs as Zoé would say. I become quite scary!!
Anyhow, we'll see if anything comes out of it.
I got my brain MRI scheduled and covered though. Yes, I need an MRI to see why my prolactin level is high. Wish me luck. I was reading about the MRI procedure and it really looks frighteningly claustrophobic. I might either need a swig of red wine, thought it's at 9:00 am on Sunday morning, or a chill pill like Valeriane (Homeopathic medicine).
The neurologist I see on a yearly basis told me that there is definite hormone imbalance in people who have Steinert (MMD), so that could be the reason why. I'll fill you in on it as soon as I know more.
On my previous post you might have seen Zoé perform "Au Pays de Candy", a cartoon I used to watch when I was a kid. She has incredible auditive memory and only needs to listen to something once or twice and off she goes, reciting and singing all day.
Now, the new trick is that I have her sing that song to herself every night and that's the way she lulls herself into Morpheus's arms.
Voila dear readers. I need to get Zoé ready for our weekly French play date. We are able to join our French playgroup now that SNAP is over until mid June when we'll start again.
See you soon on the blog.

Future American Idol??

Horseback riding

We were given a prescription for hippotherapy (Equine therapy) for Zoe. A good way for her to strengthen her core, trunk and head control. Besides, she loves horses. She is kind of a daredevil when she's on horseback. It seems that there are no boundaries, the possibilities are limitless.
Zoe has come such a long ways, and now we are experiencing her strong personality. "No!" is her new favorite word.
It is quite exhausting, because if I say "no" she doesn't take it for an answer!!

5 stitches and 16 kilos of love

Well, another initiative rite of passage, Zoé fell on her way to school this morning, and cracked her head on a concrete ledge. We rushed to the Emergency Room, and had her eyebrow stitched 5 times. My little trooper didn't like the shot to numb the gash area, nor the sheet in which she was wrapped. I was a nervous wreck, as you can imagine. Zoé tends to fall a lot, as part of her MMD. She loses balance, her clunky shoes and braces don't seem to help, but usually Zoé has a really good protection mechanism, she never hurts herself.
This morning was a different story.
We were blessed to have the company of our school aid in the ER, to help play with Zoé and enable me to double park and get a cupcake after the procedure was done.
Zoé is a hell of a champion when it comes to hospitals, doctors and procedures. She cried quite a bit because she was mostly scared and they wrapped her up like a little burrito, and covered her eyes so she wouldn't see the needle and thread coming in and out...
I hope it heals quick and scarless.
Tomorrow, we go up to Shriners and see our neuromuscular doctor for her bi-annual neuro clinic. Another doctor, but Zoé is definitely used to it.
Then, we will continue North up to Lake Tahoe where we will stay in a resort by the lake, on the other side of the Californian border, in Nevada.
We'll let you know how that goes.
We just got back from our 3-day weekend to Lake Tahoe where we enjoyed the pristine beauty of the lake surrounded by beautiful snow covered mountains.
We saw Dr. Macdonald at Shriners. He was very positive and filled me with much pride when he said we'd been doing so much with Zoé.
He did look at her walk with her AFOs, without them, with her Nikes, without them, with her SMOs, without them. He concluded that for Zoé, the best would probably be not to use the AFos, as they tend to add two sizes to her shoes and therefore making them too bulky for her to walk, hence the 5 stitches the day before.
He also mentioned that Zoé's leg inversion was due to her hip. The tip of the femur that is locked into the hip rotates inwardly all the way down to the knee. Her foot will always be inverted, that's part of her cavus deformity, and there is nothing to do about the hip. He said that in most kids, as they grow up, the body shifts and realigns itself, so again we'll have to be patient and wait for Zoé's body to mature and readjust.
We did cast Zoé's feet though for her night braces. Dr. M thinks that Zoé can definitely benefit from being held at 90 degree at night for her feet to get a good stretch.
We also bumped into the surgeon who operated on Zoé last summer, he was also impressed with Zoé. He doesn't think she needs surgery quite yet, but most probably in a couple years she might need either another plantar facia release or a tendon transfer. Again, Patience is our creed.

We are the Company we Keep.

"We are the company we keep" a saying I like for it truly stands for us. We spent last Sunday at the park with a lot of families living the life of special needs. We celebrated the 20-year anniversary of SNAP (Special Needs Aquatic Program) and "20 years of water magic." The founder of SNAP, Dori, was there and a true inspiration. She had a vision 20 years ago and followed her dream. It all started with her giving aquatic therapy one on one and she realized how many people could benefit this sort of therapy.
For us it has been a real eye-opener. Going to the heated pool (93 F. / 34 C.) where many people enjoy the warmth of the water on their bodies. For some people who are really physically challenged an average pool is not possible. The water is simply too cold. Also at the Berkeley heated pool they have special steps to go in and out of the pool and a system of pulley to enable people to be put in the water from their wheelchair onto a sort of elevator.
Dori mentioned how, at the pool, there is no physical barrier between our children and their helpers. They touch their bodies, twist them, stretch them, handle our kids with the most gentle and caring way. We were sad to say goodbye to karen, Kelly, Barbara, Shelby (Zoé's best friend at the pool), Dylan, Nathan, Nancy and many more wonderful people we encountered along the way.
We will certainly register for the summer session in June/July.
Zoé has no fear of water she is like a fish, diving in, making bubbles, catching floating toys, using watering cans, pushing balls, straddling noodles, etc. It is so good for her body, even though at night she complains of back pain. I feel it will strengthen her overtime. Her neurological doctor told me 6 months ago how for Zoé, swimming must become a lifelong exercise. Using buoyancy and defying gravity to play and strengthen her body makes it so much easier for Zoé.
I took advantage of a few sessions to swim laps in the lap lane, though the temperature made it harder for me, just because it is easier to swim laps in an 81 F. or 27 C. pool. I also know that my body is weakening overtime. My hands, my neck and tongue get stiff and weak. I still go to Yoga three times a week, and go on long walk or hikes ever week.

On a different note, I felt very honored when Nancy, the SNAP coordinator, asked me whether I would be keen on sharing my blog with parents attending SNAP. Of course, our children don't have the same diagnosis, but we share the same journey.
It empowers me to know how many people read the blog. If I can share thoughts and ideas, I am delighted, especially if they can benefit from it.

So far for us, right now, it is a battle regarding the potty. I feel desperate sometimes knowing that Zoé cannot have bowel movements on the potty. She has to be on all fours, sometimes crounching into a ball, under a chair, in a small hole...almost as if her animal instincts came back, it is odd. As far as the peeing goes, that works, but we still have a lot of accidents.
I try not to make Zoé feel bad, but I must admit, sometimes it is really frustrating.
I guess patience has to be my new motto. Just wait and see. Let it happen.

I went on the Myotonic Dystrophy Support group online,last night and it was so eerie to see how our children all share the same look. They seem like they could all be cousins. They have the same mouth, none of them can really smile...just a constant reminder of what these sweet children have to face on a daily basis, and what the future holds for them and their parents.
We share the same journey, call it an adventure into self-discovery, empowerment, strength, dedication, and love, of course, for without it, we wouldn't be able to keep on.
We are the company we keep, we are one big family.