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.
Tuesday, January 19, 2010
Wow! I have just started Yoga in Oakland. After going to a Iyengar yoga class in France, with Mom, I got hooked. So I decided upon a New Year's Resolution, that I would quit my gym membership and start on a more regular yoga schedule. It is much better for my body, for the symptoms of MMD are creeping and are exacerbated by stress. Yoga helps me feel more relaxed, more grounded in a way and is exactly what I need.
Tonight was my first session at the YMCA and I loved it.
I need stress free activities, also due to the fact that we've started casting again. Poor Zoé, she is such a trooper. She is teething big time, with her secondary molars and has to suffer the cast. We'll take it off on Friday and see how much range she's gained. Please pray for it to work. In the meantime she is enjoying super quality time with her Grammy Gigi that has come from NYC to spend 2 weeks with us.
Namaste to y'all.
Thursday, January 14, 2010
Yesterday was a weird day. I decided to stop being in denial and asked Zoé's pediatrician to finally sign the completed form requesting a disabled plaque for my car. He eagerly agreed saying if someone needed it, it was surely me. It felt strange driving with the blue card in my windshield. Weird to feel that I am now part of this other community of drivers. I felt like I was unrecognizable to myself from the person I was before it all happened. The diagnosis, the therapies, the new set of challenges. Adding the grieving process for the childhood we won't ever be able to experience. Not comparing it to our own, but to what we thought we would be able to experience.
It is the ego grieving, in a sense. When we ask ouselves, how could I have "produced" such a child, how could I have given Zoé her condition. In my case, it is not something I think about, because it was genetic. You don't pick your genes. Your DNA is established and there is nothing you can do about it.
MMD is not what defines Zoé, and she won't be looked upon with what she cannot do, but what she CAN achieve. This is what is truly important.
Today, in support group, Maria, a Mexican mom was able to feel, for the first time. Let herself cry, shed the tears that we all have shed befofe her. A lot of us, mothers in the group feel empowered, we've accepted the place we are in. For Maria, the long journey is about to begin. She doesn't really have much support from her family, because she comes from a traditional Mexican background, where autism, being different is not accepted. She hasn't gotten the final diagnosis for her son, but doctors are leaning towards "autism", and once she gets the final verdict, she will be able to start her grieving process. Then, she will have to embark on a painful journey, meeting challenges and arming herself to fight the stares, the questions from others. I felt for her today, as she doesn't speak any English, a problem that I am sure adds to her stress in front of doctors and specialists. We told her she could find a translator, a Spanish speaking support group. We also have Tina, whose daughter is disabled and she, too, suffers from her background, being Asian means that whenever you have a child with special needs, you've brought it to yourself, you deserve it for you must have done something bad, and that is the retribution. Shettal, too, suffered from her traditional Indian upbringing. Tina told us, when you have a disabled child, you must stay home and hide him or her from others. You bring shame to the family. How blessed am I! To have a wonderfully supportive family and a strong support group of friends.
Monday, January 11, 2010
I don't know where to start, but I do know that I don't have much time before Zoé wakes up from her nap.
I guess a lot of you didn't know we had gone to France, but it was a last minute decision due to medical reasons back home. We sort of jumped the gun and left on November 28th. We spent almost 6 weeks in Brittany and it felt good being home, savoring quality time "en famille".
David came with us for the first week and I must admit it was great having his help to cope with jet lag, 9 hours difference means 9 days, right? Zoé actually slept through the night on David's last day. Before that we had been playing at 2 am, 5 am, listening to kiddie music while Zoé, full of beans, played and bounced around on the couch.
We didn't do much in France, but it felt really good to stay put, sip tea by the fire, take walks in the country side and spend time with Nanny and Pappy.
Zoé also saw her cousins Mei and Saé. She had a couple play dates with Anna, she met Bébé Louise for the first time and played with Emma. She saw Shahé and Sevan for another fun afternoon. All her French friends were really happy to see her.
We also took this opportunity to see a wonderful osteopath, who sees Zoé every time we go home.
Our first visit was amazing as he realigned Zoé's body, and right after that she started talking in full sentences. He released her language skills.
Here are a few of her first sentences:
"Taty ecoute radio" (Pappy listens to the radio)
"Changer la couche" (Change diaper)
'Nanny fait dinette" (Nanny plays kitchen)
"Maman cuisine" "maman chante": (Mommy cooks, Mommy sings)
"Dame Mexicaine" (Mexican Woman, while pointing at a famous Diego Rivera painting hanging over the mantel piece.
"Prendre bain chaud"(Take hot bath)
"Changer les Piles" (Change toy batteries)
"Washing hands" A real obsession, thanks to Elmo!!!!
Today at CCS, she walked in and said "Hi Kirk" to her physical therapist!! Everyone was amazed.
At the end of the 45-minute session with the osteopath, we asked him how much we owed him, and he said that when he sees children with special needs, he likes to see them free of charge, from time to time, he told us to consider it as Zoé's Christmas gift! I simply couldn't believe it. Very different from our health insurance policies here...
We saw him one more time before the trip back home, and he saw huge improvement again, in Zoé's head shape, standing and speech. He doubts the fact that she needs glasses, but we are seeing the ophthalmologist tomorrow...
Zoé has been walking (always with support) everywhere, full of self-assurance, proud of herself. It is amazing to watch, as she prances into the kitchen pushing her baby stroller, cruising on her mini motorcycle, pushing her fire truck. I was hoping to have Zoé walk independently when we got back, but I know that I shouldn't push her. She will do it in due time, when she feels ready and once we correct her right foot. Speaking of which, we are wasting no time, we are starting casting again next Monday, on MLK Day.
Saying goodbye was heart wrenching and the trip back was a nightmare. It took us 9 hours to get from Brest to Paris, due to ice and freezing temperatures. (It usually takes 1h 20 minutes!!!) We were stuck 4 hours on the plane before getting off, and Zoé was so well behaved that the pilot sat her in the cockpit, in his seat where she pushed a plethora of buttons...she was the mascot of our flight. We then got off the plane, we had to get our luggage, and re-check in but since we had missed our connection in Paris, we got to check our luggage to Charles De Gaulle instead of SFO. We spent a night at Hotel Ibis, courtesy of Air France, and got on the next 11h30 minute-long flight to California with a 3 hour delay due to 1) a computer glitch and 2) a no-show passenger whose three suitcases had already been put on the plane!!!
Zoé is now catching up with her lack of sleep, and slept "through the night". Miracle, she woke up at 6 am.
On our flight back we met Liza, a wonderful young lady from Brittany. I don't think I could have managed without her helping me with the luggage issue, carrying Zoé and strolling a carry-on at the same time. She was so helpful that I have invited her to come and spend a w-e with us in Piedmont. I had no batteries left in my camera and she was kind enough to take some pictures of us for the blog.
While in France, Zoé turned 2, she discovered another word "chariot" (Shopping cart) and took a real liking to these carts.
Wishing you the best for 2010. May it bring Peace on Earth and shower you with Health and Happiness.
Wishing you the best for 2010. May it bring Peace on Earth and shower you with Health and Happiness.