Hannah and I met with a nurse from the DADS (Department of Aging and Disability Services) office regarding getting Hannah on the MDCP (Medically Dependent Children’s Program) program sooner than the 9 years that the waiting list is currently at. We are hoping that she will qualify for a “waiver” program that will allow us to take advantage of some of the services within months instead of years.
It was basically just an initial intake of Hannah’s condition, symptoms, etc. However, I found myself saying “No” to a lot of the questions (which actually made me happy) such as:
~ Has Hannah ever been hospitalized outside of birth? Nope.
~ Does Hannah have any medical equipment? Nope, well, orthotics, but none of the big stuff.
~ Does Hannah require specialized 24-hour care? Nope.
Then, I started thinking that maybe Hannah wasn’t “sick enough” for this program? Wouldn’t that be a kicker? The nurse does seem to think she will qualify. But we will find out in a month or so, as we have more visits, and our pediatrician has some paperwork to do.
Then, we started going through the list of symptoms that Hannah currently has based on the NIH report, Dr. Schiffman’s report, and our pediatrician…
neuronopathic Gaucher Disease
hypotonia
supranuclear gaze palsy
brainstem dysfunction
ocular motor apraxia
global developmental delays
hepatosplenomegaly
vocal cord paresis
atrial septal defect
decreased blink reflex
slight eyelid retraction
interstitial lung disease
sensory feeding problems
increased startled reflex
diffuse ligamentous laxity
genu valgus abnormality
IgA deficiency
Wow. To see it all in one place is almost surreal. But then I look at Hannah, and I just don’t see this? I see a some of them, but I really just see an adorable little girl who is happy and loving and likes to be involved. Anyone else who sees her really doesn’t see many of these. She doesn’t come across as a 17-symptom-plus baby — she is just a sweet 12-month-old with a big smile.
I see the list. But it really is just that. A list. It isn’t “my Hannah.” I understand what they mean by “the disease doesn’t define the person,” it is just what she has. Hannah is just so much more than her disease. I love that about her.
You are so right about that. She is way more than the disease. I think that is a perfect way to put it. I’ve often wonder what it is that I see when I look at her. What makes my heart melt at the sight of her and I just see that sweet little baby. She seems loving, special and wonderful even through photos and videos.