Monday, October 11, 2010
It's been a while and I jump on this little window of opportunity to fill you in on the latest about Zoé.
First off, I would like to send a big thank you to Lisa Vittek, founder of the Myotonic Dystrophy support group who greeted us with open arms when we last went to Sacramento. That was ten days ago already and I didn't get a chance to say thank you and how much fun Zoé and I had visiting the MMD Headquarters and Kayla's school.
Zoé had her appointment at Shriners and Dr. MacDonald suggested a new pair of AFO's with hinges this time. The SMO's are ok, but Zoé is slowly and surely going back into eversion of the foot, and we MUST correct this before it is too late. She does sleep with AFO's every night, and with her new Dora shoes and SMO's she is walking up a storm, but eventually things might get worse, so we must act upon it asap.
We are going to cast her new pair tomorrow...
We are going back up to Sacramento on the 26th for her post-operation follow up and will see her surgeon.
The second big piece of news is that Zoé's IEP (Individualized Education Plan) is in full swing with Speech, Psychological, Physical and Occupational evaluations. All these ladies "playing" with Zoé...it is creating a precedent, for she is going to seek my undivided attention even more!
So far, I don't know what has come up and we will be given the results the day of Zoé's first (And not the last, for she will have one every year until she's 18) IEP. I really want David to come, for I think if both parents show their involvements, it might add force to the persuasion or the choice of services Zoé is offered.
But more on the IEP when we get to it.
Zoé loves her little French Montessori school and adores her Teacher Sophie! They are studying Dinosaurs this trimester and work on Body parts, colors, shapes, etc. They have a little circle time, songs and fun, with the right dosage of structure and rigidity, which I like. Zoé is at an age where she loves to say "NO" to everything and every one, she cannot seem to sit still for more than 10 minutes.
I explain it to the fact that Zoé is MOTOR DRIVEN. If we think of it, she was a late walker. Can you believe that for the first 18 months of her life she could hardly move, sat around on cushions, with a helmet, AFO's that prevented her from moving and discovering her environment. She is know in full force, out to discover the world. Of course, sitting is boring when you can be climbing on tables and play houses, on tricycles and toy trucks. It is hard to teach her to sit down and focus. But I know that she will do in due time.
Right now we are working on the mini 'Tantrums", not the screeching ones, but the no-maman-i-am-not-coming-with you. Zoé will sit there, when I try to pick her up, she goes "noodle legged" and there is nothing I can do. She is so independent that If I pretend to leave she couldn't care less...It is quite exhausting...i have been relishing nap times.
I am also taking guitar lessons, which is nice, for I get time on my own.
Zoé's loved the dentist, as you can see from the pictures. SNAP (Special Needs Aquatic Program) is a blast!
Zoé is dressing up as a Doctor for Halloween, which comes to show that she is quite at ease with the medical field, which is unfortunately part of her world! She just had a shot on Friday and right after, on the same day, blood draw to test for her insulin, glucose levels and check her Thyroid. Diabetes can be a side-effect of Myotonic Dystrophy...I don't want to go there! This is meant to be a "happy" post!!
We are enjoying pumpkin patches and the beautiful autumn colors while we wait for Zoé's two grandmothers to arrive. Grammy Gina will come in October for trick or treat and Nanny in November for Zoé's 3rd birthday. So we look forward to fun-filled weeks ahead.
Hope this post finds you well wherever you are.
Sending much love your way!