Thursday, January 28, 2010


I know we've been kind of missing in action, but actually we've been more than busy. Sometimes I feel that my life is a treadmill and the stop button is out of reach. Thank goodness I have the PIP support group, as my 2 hours of relaxation, lifeline desperately needed in the midst of insurance pre-notifications, calls to doctors and various providers, making sure I am doing the right thing at the right time, rushing on West 580 for yet another appointment, running to get medical records, and this is a glimpse of the busy schedule I have to deal with every single week. Here I was congratulating myself on my New Year's resolution and my Namaste-kind-of-moment, and yet, I've been to yoga once in 10 days. I must start a weekly routine as soon as I get organized.
So what has happened in the past week or so:
We celebrated Zoe's belated 2nd birthday with her buddies: the twins, AKA (also known as )BFF(best friends forever) Sidney and Adair, another set of twins: Lucy and Drake, Chacha AKA Zoé's mentor, Cole, Manav and Kiran represented by her mother.
It was great and Zoé now chimes in every other minute: "Hati Dirday Zo-e!!!!" too cute. The theme of the party was of course, Sesame Street, Elmo galore and party favors with her favorite Big Bird and cookie-eating blue monster.

On a different note, we made the decision of halting the casting process for it, once again, failed. I was soooooo bummed out when we had to rush to get it taken off on Day 3. Zoé cried on and off that night and refused to put her foot down in the morning. There was no mistake to be made this time, off it came.

So, what next? Zoé's condition and her orthopaedic impairment makes her qualify for what is called "Low Incidence" impairment, just like hearing loss or visually impaired children, so we must tackle the issue at hand and we've decided to go to Stanford, Lucille Packard Medical Center in order for Zoé's foot to be assessed by an orthopaedic surgeon. He will of course look at her hip dysplasia and let us know where we stand.
We have an appointment at UCSF Orthopedic and prosthetic Center 2 days later in order to cast Zoé's foot for another better-fitted AFO. (Ankle Foot Orthotics)

We started self eating therapy with a large part of it focusing on strengthening Zoé's low-toned face, lips and mouth muscles. For instance, we had Zoé eat yogurt with a straw, making it more difficult for her to suck it up. Thank goodness eating is never an issue. Nor are shopping carts when we want her to walk and she can take Elmo grocery shopping :-)

We had another home-based assessment and Zoé loves her teacher so much that it went really well. However, and despite the fact that Zoé is a chatterbox these days, she is going to need speech therapy, for her low muscle tone might impact articulation. We need to find a provider with whom we can build a good relationship and who is in our insurance policy. An agency wanted to charge us $600 for a simple evaluation!!!!!!!!!!!!!!

But the biggest moment of this past week was Zoé's HUGE MILESTONE. She took her FIRST two hobbling STEPS!!!!!!!!!! We used an old AFO just to give it a try and Zoé went from sitting down on a low stool, to standing tall and "walking" to the play kitchen in front of her. I was ecstatic and the sense of elation has not faded...despite the daily stress of living a life that feels like you are driving 210 miles/hour.

Voila for now, enjoy the post.
Big hugs from the East Bay.


Suzy said...

Sarah! I just spent some time catching up on your blog. Wow, there has been a LOT going on since last I saw you. You are doing an amazing job, my friend. I miss you and hope we can get together soon.

big hugs and much love -

Fiamma said...

Ms. Berman,
Zoe is amazing! WALKING!? amazing. she never ceases to amaze me... but that is to be expected. she is truly a miraculous little girl!
and I know a few kids in ST and it made such a huge difference- one of them after a couple months, turned to me and said: " It's dark outside" after saying nothing but Mama for the first years of life- who knows whether it was just that he was ready developmentally to start talking or the ST.
I always read your blog- and it is a true pleasure to. I don't comment often-- but you guys are always in my thoughts! I love the picture of you and Zoe sleeping on the plane- too cute!
on another note, I did not realize I missed Zoe's birthday... so we wish her a HAPPY HAPPY belated birthday. May the terrible two's begin...
Love from NYC! we miss you guys!
Fiamma and family