I was impressed with the therapy modules, the therapists and their approach.
Chloe, however, was more impressed with the handsome office worker and therapist. Boy oh boy was she being a flirt.... giggling, kissing, sending suggestive glances their way!
This wasn't an actual therapy visit, but a screening - a chance for us to meet the staff, tour the building, and a chance for them to meet Chloe and get a feel for her limitations and potential.
They had her in all kinds of poses to see how much she could handle and how her body would respond. She sported a flirty smile and luring laugh during every single pose! Plus her pants were off because she's so skinny and they kept falling down. A big flirty girl who can't keep her pants on is not such a great combo, unless she's as cute and innocent as Chloe ;) ....
"Look, I can lift my head!"
"Look, I can pose on my side!"
"Look, I can pose on my side!"
"Look, I can rest on my elbows!"
"Look, I can stand and sit!!!"
They told me she's BURSTING with POTENTIAL. (Of course I knew that already!)
They said they've seen children with similar deficiencies and tone as Chloe achieve head control and sit unassisted after 3 weeks of the intensive therapy (4-hours a day, 5 days a week) and they see no reason that she couldn't achieve those goals after a 3-week session as well. Then their ideal schedule would be for Chloe to have two 3-week sessions per year and her abilities would improve drastically with each session.
WOW. Can you even imagine if Chloe could control her head and sit unassisted? And then maybe more?
There was a little girl doing therapy while we were there who had traveled here from New York. She was probably 7 or so and was super social and cute with Chloe. She said she learned how to walk while she was here! I can only imagine the day that Chloe will say,
"Now I can walk!"
7 or 77. I hope she will say that to me one day. If she can't it won't really matter, but I can hope and so I do.
Oh, plus there's a fashionable little outfit (called a neurosuit) she gets to wear while doing the therapy. Chloe's just dying to get into this little number....
My approach with Chloe has been to try everything, then keep doing what works (if we can afford it). We're going to make ourselves afford this and see if Chloe responds to it. It is expensive, but in a way, we can't afford NOT to try. We're hoping to start her first session in January!
Sometimes I wonder since we've tried so many treatments, and many have been expensive, if people think we are just grasping at straws for a miracle. And then if I think about it for more than 5 seconds, I realize that I don't actually care if people think that or not. We're not grasping at straws. We're not desperate. I couldn't love Chloe more if her physical abilities progressed or regressed. But SHE wants to use her body. SHE wants to be social. She's happy regardless, but she wants it. And so I'll do what it takes, I'll try everything. It's not what I will try and what I will do, but what I won't do.... There's NOTHING I won't do to work toward giving her the chance to run and jump and play with her friends. To twirl in a tutu.
Maybe she won't.
But.....
Maybe she will.
And so there's no choice. We'll try everything. I can't fly her to the moon so there's no gravity weighing her down. But I can do this. And so I will.
~~~
"When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all
I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough
The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you
This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak
So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry
To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday
But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't always good
But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too
A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth."
Author Unknown
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all
I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough
The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you
This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak
So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry
To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday
But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't always good
But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too
A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth."
Author Unknown
