Thursday, November 10, 2011

Do not sugar-coat it, please!

A quick post on our last couple weeks.
Last Sunday we attended a seminar organized by the MDA, focusing on various muscular dystrophies. We met an amazing doctor, Dr. John Day, who was just appointed as Director of the neurology dpt. at Lucille Packard Children's Hospital at Stanford. He definitely understands what goes on for people affected with MMD.
The GI (Gastro-intestinal) side effects are the most problematic ones. The most lethal. Yes, he didn't sugar-coat it, enabling us to stick to reality. He wrote a plethora of articles on MMD and I read a few of them. Toilet training is a true issue for people affected with MMD. He mentioned how when MMD patients who have the congenital form (Zoé) are in their 20s, or 30s, that is when the weaknesses appear the most. Again, a new source of stress, but we'll be ready to face these sets of challenges when we get to them.
We looked at adaptive wheelchairs. Lisa , a friend whose daughter, Kayla has CMMD, has just gotten her daughter a wheelchair. She mentioned how when a child is little, a stroller is fine. A kid who is 6 or 7 in a stroller looks odd. She was told that if she gave Kayla a manual wheelchair, she'd feel more independent and instead of people staring at her, they might be more inclined to come towards her, ready to chat.
I thought that was a positive way of looking at it. Indeed, Kayla, jut like Zoé cannot walk for hours. For now, we can zip Zoé through the streets of Manhattan or Piedmont in her stroller, and we'll see if in time she can build stamina to walk farther and farther. She is such a determined and independent spirit. She got lost a couple times at that seminar, for she was in heaven exploring the hotel. They had child care and we thought that was wonderful, but Zoé didn't feel like staying with kids in a suite, she wanted to roam the hallways, explore the outside fountain, etc.

The most positive aspect of the day: hearing from the various docs how research is moving along at a fast pace. With new medications, stem cell research in the works, studies on the RNA (The neuro transmitters that transmit the information between the DNA, your genetic make-up and the muscles. RNAs are molecules involved in protein synthesis) rapid advances in molecular genetic engineering hold promises for our children. We have to keep the faith.

On a different note, we have now entered the realm of sleeplessness with Zoé deciding that to come and give us a kiss at 1:30am, 3 am, or 4:15 am is a pretty fun nighttime ritual.
We don't know what to do. I guess reward will be better than punishment. Kids are concrete, they understand things right there and then. So I think after trying: music, lights in her room, etc. The next move is:
"If you sleep for the next 5 nights in your bed, we'll do something very special" now of course, it will give us 5 nights to decide what the special thing is, and hopefully that carrot will be sufficient for Zoé...ahhhhhh how I long for those 12-hour nights. I wanted Zoé in her crib till she was 12...but we went from baby to big girl kinda fast and now we need to take it gradually back to good nighttime sleep.
With no naps either that makes for pretty long days.
I was told about Melatonin. Will have to ask Zoé's pediatrician about it. At least I heard it works well for jet lag, so I might take it for myself for our upcoming trip to France.
Voila dear readers. I am taking Zoé up to Sacramento tomorrow for her neuro-orthopedic clinic.
Will fill you in on what we hear.
Hope this finds you all well, wherever you are.
If I don't write till then I wish y'all a fantastic and Happy Thanksgiving.
May we all find what we can be thankful for. I'll let you guess what mine is...

Tuesday, November 1, 2011

Well that's it, I crossed the so dreaded bridge...

Today I picked up Zoé at her French preschool and this little girl came up to me:
"Zoé's mom, why does Zoé always have her mouth open?" (She mimicked Zoé's mouth)
I couldn't think of anything to say but: "because she likes it..." I then pecked Zoé's cheek to show her that everything was all right. Was she aware of anything odd? Did she think, mom you are lying. I guess I'll have to think of other things to say, but as I was caught in the moment that's all I could think of.
If you readers have any ideas of how I should handle it, please let me know. I need help.
I know I will always be faced with questions.
Some of you may know that Zoé wore a helmet for 15 months, from 6 month onwards and I used to have the cutest comments from kids along the way:
"I love babies with helmets"
"Does she skate?"
and when asked why she wore a helmet, I once replied "Because she wants to be an astronaut."
I guess with the "tent or fish mouth" as it is called in "medical terms", I should say because Zoé will do an ad for lipstick! Only a French girl can pull this one off...
So tonight I wandered on the webpages of Myotonic.Com and I can say that all her friends share those lips.
I guess none of us question them any more.
David did mention that last night (and I remember it precisely) while we were trick or treating, a 6-month old baby grinned at my flashing light wizard hat...I will never get that grin, let alone that smile.
But I will get the twinkle in the eye and the sweetness of her warm hugs.