Sunday, August 21, 2011

A new task at hand

Yes, a new task at hand. After stretching Zoé's body in and out, after having built bolsters and found new sets of goals and activities to strengthen her, I now am being taught how to deal with her oral motor interventions.

As most Myotonic Dystrophy patients, Zoé lacks facial muscle and expression, because her muscles have atrophied or were never developed from birth.

I can remember trying to squeeze her on my breast hoping she would latch on and the pain of not being able to breastfeed her for she had no sucking strength...and as I result I never produced milk though I pumped for 3 months
hoping she would get the few drops of "gold" I could produce. Then I got over it..

This was the first red flag that something was terribly wrong. No cry at birth, open mouth in utero (I can see it in the few shots I have of Zoé in the womb...just thought she was yawning...) and open mouth on a lot of pictures.

Yet, the oral motor therapy and speech therapy she is given have paid off. Her mouth is stronger as I can ask her to close it shut more than before. I ask her to do "Kissy lips" and then she presses her cute little heart-shaped lips into a nice soft kiss.

The new set of exercises I have to perform though, are not easy, I feel I am invading her with my fingers in her mouth, stretching her upper lips, and lower lips, performing stretches with nice names like the "Butterfly" where I place my fingers at the center of her upper lip and compress the tissue and move away from center until the finger and thumb pads line up with the edge of the nose. We do the side to side lower lip stretch, the corner lip stretch, the horizontal lip stretch, the resistive lip stretch, the Z stretch for the nasal bridge,etc. I have to get a probe to work on her resistive chewing.

Anyway, the point is not about the exercises but about the fact that Zoé never complains. She has to endure so much. Not too long ago she told me she didn't want to do her therapy session with the physical therapist who comes to our house. I think her life has been regimented for so long that now she has probably come to a point when she says enough is enough.

But I will never say it enough, true and hard work pays off. It might sound corny, but we wouldn't be where we are today if we hadn't been doing all of this day in and day out. I also realize that all the toys or games we do, have a purpose. I never buy something for the sheer pleasure of it being fun, I consider its cognitive input for Zoé, how it might help work her fine motor skills, her gross motor skills, etc.

I thought the pictures I posted would be a bitter sweet ride down memory lane. Though Zoé is still beating all odds, I do worry about how things will evolve. I still suffer from the loss for her, the ballet class she won't attend, the soccer game she won't partake in, the jumprope skill she won't master.

But hey, my sweet pea is still a wonderful singer and a skilled horseback rider, and a true imaginative reader and story teller, so I must focus on all the good stuff. Focusing on what she CAN do.

I must remind myself that I am not responsible for Zoé's difficulties (Though she shares half my genes and those that carried Steinert through her body and mine), I am responsible for helping Zoé grow through them.

She doesn't cease to amaze me. She has a very strong personality, and I should embrace that as well, though it is sometimes really hard to deal with, when she thinks it is her way or the high way! She is my angel who deals with life and all it has to offer and all she has to conquer.

For those of you out there, who have a child diagnosed with MMD, here is the website for the oral motor work: Hope this helps.