Monday, November 9, 2015

Fall Update

Dear blog readers, it has been too long, I know. The summer has been long gone and every day, I think I will find the time to fill you in with the latest news from our side of the screen. So where should I start?

Summer was glorious as usual, Brittany by the seaside, Annecy by the lake, Trento in the mountains, culminating our trip with a romantic getaway to Venice, and its vaporettos, its chichetis, the gondola ride, incredible food, and the most splendid time spent with Morena, Massimo, Francesco and Lorenzo.

Back to the states was an arduous trip with Zoe not sleeping, wanting to walk the miles of aisles, back and forth. When we had to recover from jet lag. It took Zoe 5 days of restless nights, eating cereal and watching videos at 3 in the morning.
The first day of second grade came and went, the horse show, the MDF family day on the bay, the conference in DC on Myotonic MuscularDystrophy, and the dreaded triennial IEP, after 30 days of ongoing tests to assess Zoe and her unique needs.

I like to speak of uniqueness, because this is truly what it is. DM Type 1 or Steinert, is a disease that defines all aspects of school life. It explains why focusing is hard, why math concepts are difficult to grasp, why reading and blending sounds are taxing for the brain. Why making friends is the most daunting task of all.

This year in second grade is not an easy ride. Zoe started with one aide, then midweek after a couple months, she was given another one.
She is in a class with co-teachers, which means that half the week she has one teacher, and the last two days of class she has to adjust to a new teacher, a new personality, new methods, and though it can be a good format for some children, it is not for Zoe.
At the meeting we were told that she seemed lonely. So hard to hear.
Her anxiety level increases due to her daily report, when the aid assesses her behavior, her attention span ( which is limited) , focus, her whole body listening, her watching eyes...I could go on and on.

So we keep chugging along, and I don't give up.
We quit Kumon, which was Zoe's most dreaded class, and so I added reading comprehension and writing to our homework load. I try to break the work with physical activities that enable her to reset her body and mind, so throwing a ball ten times, running to the fireplace and back, chair push ups (the aide enables her to do some of these activities in class). It is amazing how it helps. 
Some of the various assessments were hard to read,  in most areas whether it is gross motor, and adaptive physical education, Zoe is " below average" in all areas. I know I should accept that because it is the nature of the disease, but being reminded doesn't help.
Anything involving fine motor skills is also difficult, the reason why Zoe never likes to draw or color. 
We have not yet signed her new IEP goals, we will take our time to make sure we know what they entail.
David and I wrote our letter of concerns, and I will be sure to post it on the blog, as it can be helpful for those of you out there who have to go through IEPs.
I did remind the teachers and service providers not to forget that for Zoe to carry her body all day is exhausting. We take for granted the fact that we can sit for hours at a time, that we can walk here and there, but one step we make is 3 or more steps for Zoe.
Myotonic Muscular Dystrophy is a vicious disease that compromises everything, that affects your muscles, your brain, your stamina, and your emotions.

I am writing this blog on the plane on my way back from my 3 day trip to Iowa.
I took part in an extensive study on the brain and the incidence of the disease on brain functions.
The study started with a neurological assessment, followed by blood work. They will send my blood to the lab to separate my DNA and keep a sample of it in their data bank, and send another one to Scotland where a lab works specifically on CTG repeats.
Urine sample to root out pregnancy, and then 20 or so memory tests, cognitive tests, psychiatric evaluations. 
Some of the tests were amazing. The research coordinator, Stephen, gave my two lists of 20 words, and then I had to repeat them from memory and within a limited time, 25 words to define as if I was taking the definition from the dictionary, symbols to reproduce, cube to make three dimensional figures, face recognitions, hand grip strength. Sketch a geometrical drawing, and then 20 minutes later reproduce it, always with the timer in hand. General culture test, mathematical problems to resolve without pen or paper, lists of numbers to repeat and lists of words to classify in numerical order within your head! No pen، no rough draft. I had to fill a multitude of questionnaires
The culmination of the study was an hour plus MRI of my brain. 
I have to admit I enjoyed wine o'clock at the hotel bar after more than ten hours of testing, including 30 minutes for lunch.
The Hospital and Research Center of the University of Iowa are truly impressive. The campus is beautiful. I am ready for my next two visits back to Iowa, as this is a three year study.
Dr. Nopoulous, the psychiatrist in charge of the study wants to extend the study to assess children's brains. 
Do you know that 50% of all children having the congenital form of DM are autistic. 
Just like the Washington DC conference where I went again this year, I feel elated by the idea that we are all in it together, fighting to find a cure.  I feel blessed by the dedication all these researchers display, their enthusiasm is limitless and their care is remarkable.

I go to Stanford this week to finish my family history study. So I will fill you up on it.

And then on to new adventures... I hear there is a study in Florida. 

Well, I guess I will close this post here for now.
See you soon on the other side of the screen.