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Thursday, March 6, 2008

The Facts

I am going to attempt to write an emotion-less piece today. I’m not sure I have the ability to do that, since for me, writing is all about expression and feelings, but I don’t have the time or energy to cry right now. And I feel the need to process a bit longer before spewing out my feelings to the world.

What: Ellie’s appointment at the Spasticity Clinic, seeing a physical therapist and the “CP Doctor” (aka: physiatrist)

When: Yesterday

Where: Rehab Centre, where we co-ordinate her CP-related medical stuff (she gets her equipment through the Centre, and also sees an orthopedic surgeon there)

Why: To see if there’s anything else we should be doing to help decrease Ellie’s tone (tight muscles)

The results: The therapist spent about half an hour working with Ellie, stretching her muscles, measuring her legs (to see at what point the tightness kicked in), etc. She kept saying, “Ooh, yeah, she’s very tight,” or, “Wow, she’s quite involved.” So, I knew that things were going less than swimmingly. At the end of the assessment she said,

“Well, I’m fairly certain that Ellie will never walk functionally.”

She went on to explain that, even if Ellie could take a few steps in a walker, her gait is so affected by the tightness in her hips, that walking would be completely inefficient, and a wheelchair would most definitely be her main mode of ambulation.

(Keep to the facts, Chrystie. Keep to the facts…)

I asked her about the possibility of Selective Dorsal Rhizotomy, a surgery that involves cutting the nerves in the spinal cords, which results in looser leg muscles. The therapist (and later, the doctor) said that Ellie was NOT a candidate because they only refer to surgery patients with less severe CP, who are expected to eventually walk.

We talked about the possibility of Botox injections into Ellie’s tightest muscles. For those of you who are unfamiliar, the procedure is to inject Botox (or botulism poison) into the strongest muscles, rendering them paralyzed. This allows the weaker muscles the chance to work and gain strength. Botox is temporary, usually lasting 2 months. We were told that because Ellie’s hips were so incredibly tight (spastic), it would require 20 needles (injected directly into the muscle…ouch!) each time. They asked us to weigh the pain vs. gain. In other words, if Ellie’s not gonna walk either way, is it worth the pain and trauma?

Lastly, we discussed the option of oral Baclofen. This is a prescription muscle relaxant. Adults will often use it for back pain. There are some side effects (grogginess, constipation), but the starting dose is fairly low, so the instance of major side effects is minimal. We left the clinic with a prescription in hand. We’re still unsure if we’ll fill it. We need to do some research and soul-searching first.

We heard the therapist and doctor use the words, “very tight”, “severe”, and “incredibly involved” many times in those 3 hours. Not my favorite phrases.

So, there are the facts. I’m sure you can all imagine the emotions I’m feeling right now. It was NOT my best day. I’m still trying to process it all, and figure out my “plan of attack”. Do I come to terms with a wheelchair? Do we pursue another opinion (especially in regards to surgery)? Do we push Botox?

My brain is a bit mushy right now.


Bill and Melodie said...

Hey Chrystie, please know that we are praying for sweet Ellie and for you guys as you seek to do the "right" thing for her.
Love you guys!

Anonymous said...

If I've learned anything about you in the last 20-odd years, it's that you are one of the strongest and most determined people I've ever met. I know that you'll continue to work and discover Ellie's full potential, whether her full potential is to be found on wheels or on her feet. She's a lucky little girl to have such motivated parents, and I know you guys will make the right decision.

The Mitchells said...

I'm mushy brained too. How can anyone say something that solid when she's made SO much progress over the past 2 years. I know we pray for specifics and they don't always happen or at least not on our time frame, but I will pray that she starts to prove them wrong. Maybe she won't take off tomorrow, but I will pray for steady progress that shows that she will walk independently one day. I think that would be the hardest news to hear, because, ultimately, that's what we look forward to...the hope that they will someday be more "typical" and independent. Also, I will pray for your broken mother's heart.

love from snowy Dallas,

Peitricia Mae said...

Oh sweetie. I'm sad for you, but I also know that you (and Ellie) will meet this hurdle with the same determination and strength as those that have come before.

With much love and hugs.

Barbara said...

I read your post earlier on the baby center cp board and now this. Wow, so much tough information and hard choices. We're just starting this journey so I have no advice for you but I've been thinking of you and how you must be hurting for your little girl right now. I hope things get better soon.

I also wanted to thank you for your warm welcome to the board and your kind words. I'm sure Bennett will amaze me as time goes on just as I'm sure Ellie will continue to amaze you - Her story has just started - and no one will write it but her!

Patyrish said...

Okay can you say MAJOR YUCK APPT?!

I HATE appointment like that. When we did Makily's school assessment I seriously wanted to poke my fingers in my ears and sing "Henry the 8th" as loud as I could so I didnt have to hear them saying "severe and very involved". I mean I KNOW she has problems but for some reason hearing a professional say it out loud IN FRONT of you....well that really stings.

Only you and Daddy know the right choice for Ellie. The decisions we face as special needs parents are incredibly hard AND TOTALLY unfair. Choosing between options that both SUCK and can lead to pain for our kids is very upsetting.

Hang in there.

I don't care what they say though, I havent given up on Ellie walking.