I am learning from an early age that you sometimes have to work hard to achieve your goals...but working hard can also be fun. As many of you know I was diagnosed with PVL in July 2010 and we've been doing various therapies as early intervention in the hopes that my brain would rewire the neurons lost in the areas of damage....the idea of brain plasticity. If you want to learn more you should read this book by Dr. Norman Doidge, The Brain That Changes Itself.
Well the question probably on everyone's mind is how is the therapies working??? Mommy and Daddy both think that I am less stiff in my legs and at times can be quite loose and flexible...I can put my toes in my mouth.
But when we saw the Dr. Daniel Birnbaum, my neurologist in early February, he was still very concerned that I am too hypertonic in my legs...i.e. there is too much tension and my legs extend straight out whenever I am stressed and it takes a bit of work for Mommy and Daddy to get me to let go and release, especially my ankles. So what is the prognosis...well we don't know definitively and won't until I am about 18-24 months old, but Dr. Birnbaum has to explain worst case scenarios and what we could potentially expect....which is that I likely will have cerebral palsy.
Okay now that you've had a moment digest that...Mommy, Daddy and I were pretty shocked too when he told us and obviously we were hoping for better news. It's something that we have to prepare for as a possibility but as Daddy said on the drive home..."we are not willing to give up and accept it as a final conclusion." For those that know Daddy...you know how much he enjoys proving someone wrong and keeping the medical establishment honest...and I think he has a better chance of winning this challenge when we are on the same team with the same goal, then he had with the Biggest Loser/Gainer Challenge.
When you hear cerebral palsy (CP), the picture that pops into your head is probably of someone who walks with crutches or is in a wheelchair with spastic cerebral palsy. But did you know that Abbey Curran, Miss Iowa in the 2008 Miss America Pageant has cerebral palsy?
What I may have is spastic diplegia, also known as Little's Disease which is hypertonia and spasticity of the lower extremities which can really be broad ranging from mild to severe. Our goal is to work very hard to successfully resist and "push through" the extra tightness I experience so that I will be able to walk with no assisted devices or little noticeable gait.
So right now, I get in home therapy weekly with Easter Seals, my developmental specialist Rebecca sets up goals with Mommy and Daddy. Rebecca works with me and teaches Mommy things we can work on daily or brings in other specialist, like physical and occupational therapists like Antonietta or Annie (Rebecca's supervisor) who does infant massage on me.
I am also starting up with California Children's Service's Medical Therapy Unit where I will go in and get weekly therapy (physical, occupational, speech) at the Castro Therapy Unit, which is close to home in El Cerrito.
Those are the two primary things I am doing now. We decided to stop the Anat Baniel Method for while because it was getting to difficult for Mommy to take me to all the appointments. We'll see if it makes sense to start back up after my little sister arrives.
Other none conventional things we've tried are a bit more in the "if it's doesn't do any harm, what do you have to lose" category....I'll tell you about Daddy going to see Braco's Silent Gaze in the next blog.
Till then...I continue with all my therapies but I think food therapy is the most fun!
