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Tuesday, March 11, 2008

A New Day

And a new perspective.

Obviously, last week was rough. The appointment with the physiatrist and therapist was a gut-puncher, and I allowed myself to wallow for a good couple of a days (because it's all about ME, you know).

As usual, my profound sadness and despair has been replaced with good ole ticked-off-ness. I will NOT allow ONE opinion by ONE professional to alter my belief in my incredible daughter. I realize that there is a possibility that Ellie will never walk, but I'm gonna cross that mental bridge if I get to it. Right now, I still believe and I still have hope.

Many people have encouraged us to seek a second opinion. I agree, that's a great idea, but it's much more complex than many of you realize. Not only do we live in Canada, but we also live in a sparsely populated area. There is ONE CP doctor in this province. So, in order to see another doctor who specializes in spasticity, we either have to travel to a larger Canadian city (a 15 hour drive MINIMUM), or we have to pay $500 to see a professional in the States. It's never as simple as opening up the Yellow Pages, picking a specialist out of the dozens listed, and driving ten minutes to see the (hopefully) good Doctor. Oh no. That would make life much less interesting.

Richie and I are still wondering if Ellie will be a good candidate for selective dorsal rhizotomy surgery. (This is the procedure I asked last week's therapist about, and her reply was, "Why put Ellie through invasive surgery if she'll never walk anyway?" GRRR...) When I was perusing the St. Louis Children's Hospital website, and found the criteria for SDR, I realized that, on paper, Ellie fits nearly every one.

Essential Criteria:
At least 2 years of age
Diagnosis of spastic diplegia , spastic quadriplegia or spastic hemiplegia
(Ellie has been diagnosed with either diplegia or quadriplegia, depending on the doctor)
Some form of independent mobility, for example, crawling or walking with or without an assistive device
History of premature birth; if born at full term, child must have typical signs of spastic diplegia
No severe damage to the basal ganglia on MRI examination
(Ellie's radiologist even mentions specifically on her MRI report that the basal ganglia look perfect)
Patients exhibit potential for improvement in functional skills after dorsal rhizotomy

Interesting, huh? We think so too!

I emailed St. Louis Children's, and they requested we send a video tape of Ellie "in action". We have a list of different movements they need to see on this video. Dr. Park and the team of therapists will evaluate Ellie via the video for free! How amazing is it that we can obtain that coveted "second opinion" for free, via a VHS tape?!

Don't worry, I'm not getting ahead of myself. I know that the team in St. Louis may reject Ellie as a candidate, or may say that she's not ready yet. I'm okay with that. It's not like I look FORWARD to the possibility of my kid's spine being cut up. I just want to know that we've pursued every option, every "second opinion".

So, pray! Pray that we can capture a realistic video snapshot of Ellie, and that the St. Louis doctors are wise. Pray that Richard and I make the *right* decisions (I try to alleviate some of the pressure by telling myself that there are no "right" and "wrong" decisions in regards to Ellie's care...).

So, TAKE THAT, raunchy therapist from last week! (Can you see me sticking my tongue out??)


Sunny said...

Praying for favor, for miracles, for peace, for wisdom. Maybe not in that order but for clarity for sure. HUGS!

Patyrish said...

Praying for all these things for sweet Ellie. I am glad to hear you have not given up hope. It's a tough road, but you are walking it with grace.

Kiss little Ellie from Makily.