Friday, July 22, 2011



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.