Thursday, November 29, 2012

Happy Happy Happy

Well, first of all, I have to say that I am happy I still have followers out there.
I know I should not dwell on it, but I sometimes feel I write the blog and nobody reads it. Yet, in recent mails I have been overjoyed to read that I do have my "fan club", my sweet followers.
So Thank you for spreading the joy. It makes my day.

Actually, I also know that I write the blog for Zoé. Hopefully, one day, she'll be happy to read about our adventures in Holland, in therapyville,  in OT-dom, in PT-town...

So what is new, you might ask? Well, in less than 72 hours, my sweet little one will be 5. Yes, 5. you read it correctly, F.I.V.E!
I cannot believe it.
So much has happened, so many hurdles have been conquered, so many hills have been climbed, so many ups-and-downs, so many happy days, so many sad days, so many exhilarating moments, so many devastating news, so many ... and yet, the most amazing gift of all, our Zoé, which by the way, in Greek, means LIFE!

She is our life, our joy and my constant worry for what the future holds in store. But I do take it bird by bird, or day by day.

Today, I went for my annual echocardiogram and the sweet technician and I got to talk about Steinert, which she had never heard of. She did tell me: "Well you've got a beautiful heart!" I don't know whether she meant it literally or symbolically...hahah, I know she meant my valves looked good.
So that's done, check, see you next year probe and gel.
My holter monitor showed a few heart palpitations but nothing to worry about.

On the home front, David travels a fair bit, and I started a new job. I now teach French at the Ecole Bilingue, the Franco-American school in Berkeley. It's only 6 hours a week, but perfect to grease the rusty brain and to get slowly back into teaching mode. I am thoroughly enjoying it and love to have "my old life back", in a way...

The support group is still up and running and it feels so good to get together with my special moms of special lives.

Mom just came to visit from France and both Grandma and Aunty are coming in from NYC this evening.

Zoé and Maman on the roller coaster, holding on to dear-life
Easy Rider
We went to Funderland after our bi-annual visit to Shriners Hospital in Sacramento. It will now be part of the routine, and I am getting better at roller-coasters, just so that you know....
Hope this finds you well wherever you may be and HAPPY!

Wednesday, November 7, 2012


I am about to scream as I write this post...and I am on hold with my insurance provider...I wonder what they provide besides anger, frustration, delirium and headaches.
I called to pre notify some upcoming medical appointments and suddenly they tell me vision is no longer covered. I had to look back months to find the pre note tracking numbers I had to verify that yes we did get covered. I think I am about to change provider. I have at least a masters in insurance management if not a PHD!

Well I should be greeting and welcoming you back on the blog in a more heartfelt manner, but I am sorry, my world of insurance coverage hasn't changed. Patience...patience is really all you need.

So it's been a while, and I wasn't sure anyone was reading the blog, so I sort of gave up on it.

Much has happened between now and the last "real" post I wrote. We went to France for 2 weeks, which was really frustrating, we hardly got adjusted to jetlag that we had to turn around and fly back to The States. Yet, we managed to see dear old friends and that was worth the 22 hour flight there and back.

Then we had Zoé settled down in Pre-K at Linda Beach and I started subbing at Les Petits Francophones, a little French preschool in Oakland for almost 6 weeks. It was hard to juggle two schools and I started back in college studying Early Childhood Education in order to pick my brain and add homework to my workload...don't ask me why! but I love being back in school, though it's kind of an eye-opener as I am by far the oldest one in the class and I must admit it is much harder the second time around for I don't have the brain cells of a 22 year-old!

Halloween is around the corner and with Halloween and Thanksgiving I always think of IEP. Yes, it is that time again!

So I pick up the blog after Halloween, it's come and gone and now we are in assessment mode with everyone wanting to see Zoé: school psychologist, special ed coordinator, language pathologist, PE teacher, to name a few.
The IEP is set for November 13th at 8:00 am (Pacific time), keep your fingers crossed. This is where we decide whether Zoé is still entitled to her thearpies, her in-class aid, etc.

The BIGGEST NEWS of the BLOG, though is : POOP!!!!
We are free of: diapers, wipes, poopy fingers, poopy pants, smelly bags, etc.

On her own time, our lil Miss Zoé has decided that it was enough, the pressure of turning five was on and she has not been using diapers during the day and AT NIGHT for the last 3 weeks.

I think I am more overjoyed about this than her first steps! Hard to believe but I think it's true.

No more diaper bag in tow, no more "always make-sure-I-have-extra-diapers", no more hurting in the supermarket with a smelly princess next to me at the cash register.

I HAD TO LET YOU ALL KNOW!!!!! I am thrilled, overjoyed, feeling like the sky has no limits, that the road towards OUR "normalcy" has started to open up, in a strange way.

Though Normalcy is still far from what we live. We have our own.

Zoé had her bi-annual rehab visit at Shriners and it was terrific. The Doctor couldn't believe it.

She now wears SMO: ankle orthotics and her speech is progressing.

On a different note and I won't dwell on it, my symptoms have begun to increase drastically. I am now facing my limitations in many ways and I am not quite ready to discuss the feeling. I am processing it all. Besides, this is not the place to talk about it. This is Zoé's blog. In due time, when I am ready, I will discuss what is happening. After all, it might be what Zoé will face in many times to come. And in her lifetime, I am sure there will be a cure. Maybe not in mine. I only pray for hers!

Enjoy the pictures. I will try to be more consistent, if you only tell me that you are still reading these few humble lines.
Love to all.

Zoé and Le Chat

Spelling without tears

Blanche Neige

Mommy's heart monitor

These assessments are soooo boring

Love pumpkin patches