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Hodgepodge

Surreal summer so far. I haven't written because I was in Mexico for 2 weeks to help mom recover from emergency surgery and a 3-day artificial coma. What else can I say? but share the mixed emotions I felt: fear, anxiety, post-traumatic stress, tiredness, exhaustion, and the fact that one has to cherish the living, that for mom it was a question of hours, not days.
Seeing her on a ventilator reminded me of how much we are blessed when we are healthy. Never take it for granted!

It empowered me to see how I could help, holding the fort, making sure that when mom fully recovers she'll be able to look back on a bad summer, but only one in many more good ones to come.

It was weird to be in that position, to see mom so frail and fragile. Thinking of Zoé who one day might have to help me in such ways. And thinking so much about dad and how much he had to endure in such a graceful way. It was truly a humbling experience.

Parenting goes both ways.

Before flying down to Mexico I had to attend a sleep clinic to see whether I suffer from sleep apnea. When the nurse organizing the test saw me he said he doubted whether I suffered from sleep apnea.
I don't have the stature of someone with such a disorder.
It also made me fear what many people with MMD have to undergo, sleeping with a C-PAP ( a sleeping device flowing oxygen during the night, opening the airways). Now I have a baseline and I know how much the test costs: $3,500...and another $300 out of pocket.

Zoé also had to wear a holter this summer, her annual visit to see a cardiologist went well and she is good to go for another year.

As far as her bowel movements, it is a constant battle and I am so tired of it. It just wears me down to have to deal with it. When she gets too clogged up she vomits, because if it doesn't come out one end it has to come out the other.
I feel so bad and depressed to see her agonizing on the couch, telling me that her belly hurts. Steinert patients also suffer from what we refer as our GI problems (Gastro-intestinal), and let me tell you it hurts.
To solve the problem she gets a big glass of miralax and a couple of prunes and off she goes.

She is doing wonderfully well in speech therapy, with lip closure and pronounciation. We are still working on it and the new focus will be the "F" sound.

Zoe is also still having PT twice a week and a great relief for the summer is that the therapists come to our house.

Horse therapy is a blast and Zoe gets to strengthen her core, gait training and balance. They also work on speech and coordination as well as fine motor skills:
giving orders to the horse to go and stop, picking up letters out of mailboxes, choosing a stuffed animal way up in a tree, naming colors and numbers, steering the horse, catching balls, throwing big inflated dices and naming the number, decorating the mane of the horse with clips, it is wonderful to see what creativity the therapists come up with.

Zoe had a wonderful time at SNAP (Aquatic therapy), going under water for 5 seconds and opening her eyes, She is like a fish in water.

Next week we go down to Disneyland and I cannot wait to see the twinkle in Zoé's eyes when she discovers the castle....we are in full need of R&R and will enjoy days at the beach and in the warmth of Southern California.

I haven't been really consistent with the blog lately and I apologize, but I feel my life is "slip sliding away" as well. Though, I think Zoé enjoys it more than I do.
What are the big news. Our friend Caroline has arrived and it is great to get help and free some time for myself. Mom came and went, she's in Baja right now and will come back for a week before heading home, back to France.
We went on a road trip up to Redding to see family and Zoé had a blast in the pool. She even went as far as to push me away from her so that she could feel her independence floating in the deep end pool.
I could just see the sense of pride she felt. Defying gravity as she floated away and back to me.
We did two horse therapy evaluations and Zoé is now going to attend two different hippotherapy programs. It will really help build up her abdominals and help her balance.
The first program was amazing as Zoé rode the horse frontward, backward, lying down, straddling it like a sack of potatoes, and trotting. She was quite clear at telling the physical therapist that she didn't really like the trotting part. A bit too rough on her. The second program was gentle and Zoé had to put rings of colors around poles. She also had to spot colored stars placed around the corral in a way to force her to look upright. The first thing you must do to work on balance is to look ahead, never look down, as it will tend to pull you downward.
SNAP (Special Needs Aquatic Program) starts again tomorrow, and we'll be enjoying the warm heated pool to float around. Zoé loves to dunk her head underwater. My little Ariel!
I hosted our moms support group this month, and the issue of discipline was brought up. We discussed "spanking" or should I say "popping kids on the bum" as a very hot topic in this country. I did pop Zoé on the bum in a cafe recently and oh my, I was reprimanded as if i was abusing my child. I guess it is a cultural thing. I got spanked as a kid and I think I turned out pretty well. One mom suggested a leash so that I could keep Zoé by my side, I find that even more outrageous. Again, our cultural differences.
Sometimes I lose my temper, but I wonder what parent hasn't and I know I shouldn't teach Zoé that it's ok to use "violence" to solve problems when she misbehaves. I just think I am a pretty typical mom who struggles with parenting a very willful little girl who doesn't really take "no" for an answer.
Anyway the support was great and I always feel so empowered when I hang out with my lifeline, my posse, my moms-of-kids-with-special-needs who happen to be very special.
On the medical front I attended my first neuro-muscular clinic and got to see an array of doctors concerning my diagnosis and my health.
My EKG was normal, my brain MRI came back fine. I do feel very fatigued and don't feel rested when I wake up in the morning so I'm going to do a sleep study to assess my sleep pattern. (Another side effect of MMD is sleep apnea). The neurologist thinks that if I don't feel that rested after 8 hours of sleep it could be that I don't have a restful night and that I might lack oxygen...oh well, it freaked me out, but I'll see what the sleep test shows.
I was also brought up the subject of orthotics, but I am definitely not going there yet. I am pretty active with yoga and hiking every week. As far as I know I haven't fallen yet, so we'll come to it when I feel that I need it.
Funny enough but these neuro clinics have the opposite effect of a placebo. I always feel weakened and depressed when I see doctors because I know that they are scrutinizing me as an MMD patient. Same with the myotonic support group. I like them but sometimes I feel down as I see people that are worse off than me and I should feel good, but I suffer from empathy.
Other than that not much to report. I am looking forward to therapy sessions of my own. I am struggling with loss and grief and need to work these issues. I have been in denial and now I am going to see a psychologist to help me deal with the last 4 years of my life that haven't been that easy. From the infertility odyssey to MMd with Zoé and me, as well as my brother, from my father passing and David's, from not working, because I cannot as I have a timetable full of therapies and appointments. from being brought into this new world of diagnoses and ailments, of pain and cries, and of new found joys. Sharing the journey with wonderful parents who believe and hope that science will perform miracles.

Slip sliding away

Ballerina Ballerina

Today my little ballerina juggled the most excruciating schedule possible for a 3 and a half year old. It started with occupational therapy at 8:30 am, followed by Speech therapy at 10:00 am, followed again by a cardiologist appointment, including EKG and Holter monitor. Zoé is sleeping with it right now. She ended her day with physical therapy from 5:15 till 6:00pm. Sometimes I wonder whether it is all necessary, but then I think that I'd feel guilty if I didn't have her do all these therapies.

Actually funny enough, I always tell Zoé ahead of time what we are going to do this week, so she can get prepared. So this morning she woke up and said:"What's the program today?", it cracked me up...She is conditioned, I guess she knew and remembered what I had told her.

I saw a funny bumper sticker in Sacramento when we went to get her night Orthotics on Tuesday, it said:" My kids drive me crazy, I drive them everywhere!"...that's exactly it. I am chauffeur number 1, with Zoé onboard and the greatest gifts Nanny brought from France: BOOKS ON CDs, they fill my car with magic, beasts and princesses, magic wands and infinite possibilities, as I drive my little princess towards a world full of possibilities and endless imagination.

Wishing you all a nice long restful weekend.
We are leaving tomorrow for a 3-day road trip and will fill you in as soon as we get back.