Tuesday, June 28, 2011

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.

Monday, June 27, 2011

Wednesday, June 8, 2011

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.