Lexi had her spasticity (motor, muscle tone) appointment with the motor/surgical evaluation team on Friday, Feb. 22.
First of all, it took us FOREVER to get up to Murray because of all the accidents from the snow. People - drive safe! Luckily, the team had come just for Lexi, so they waited for us - even though we were 35 minutes late!
There was an OT/PT there (different than her normal ones), along with her normal Rehab people (Gooch and Krensky, links to their bios at the end), as well as a PT intern. They did an eval on Lexi in regards to her mobility, tone, etc. We also talked about her daily life, her bracing, her concussions, therapy, etc.
The way the did the eval on her motor skills was by moving them around, etc. and ranking them 1-3, 3 being excellent, 1 being yikes. Most of hers were 1's & 2's. They also did a few "games" which eval'd her skills.
In regards to her bracing:
1. Hard to figure out how often she needs to wear it. With it, she's safer, and can walk better. Without it, she is increasing strength, but not walking very well.
2. Decided to wear the brace anytime she's outside the house, and sometimes in it.
3. Talked about shoes she needs to get - with the brace on, and shoes for when she isn't wearing it (but will still give her some support)
4. Getting a small brace/insert for Left foot, as there is some high tone there, and they want to try and fix it. Luckily that one will only be probably $50... :-)
5. Her night stretch splint she doesn't really tolerate, so they want her to try and get in about an hour while she's awake.
On her next treatment/injections:
1. Do it, as it does help her temporarily!
2. Scheduled for March 5 @ 10:30am
In regards to her surgery:
1. Surgical team (the OT/PT) was border-line on it, so the decision fell with us and her rehab specialists. The team all concurred.
2. We thought she had to be at least 4 upon surgery, but it turns out she doesn't. They are wanting to schedule THIS year, ASAP.
3. Because of her growth, her condition is worsening, and the surgery wont' be a temporary fix, like her treatments are.
4. She is a perfect candidate - outgoing, active, happy, determined, etc.
What the heck is it?
Selective Dorsal Rhizotomy is, in Laman's terms, a surgery where they will go into her lower spine, stimulate the nerves, figure out which ones are damaged, cut them, and redirect the nerve ending flow so it doesn't signal her leg/foot to be tight, etc. The surgery lasts at least 4 hours and the hospital stay is at least 2 weeks.
Why do it?
Though it won't FIX her, her quality of life is going to be amazingly better. She won't be receiving treatments in her legs anymore - the Rhiz. is a "permanent" treatment. We want her to have the best life possible.
Why so young?
The younger the better. Recover time is quicker, the brain plasticity (ability for the brain to redirect nerves, strengthen, and overcome) is SIGNIFICANTLY higher. Plus, her condition is only going to worsen with age.
Why so soon?
See above
How much is it?
You don't want to know. We still have to work with insurance to figure all that out. But really, wouldn't you do anything and everything you could to secure a better present and future life for your daughter? We would, and that's why we're not fretting over the cost right now.
When is it?
We have our pre-meeting with Dr. Walker, the surgeon, on April 9 at 9am. We will go from there. The surgery has to either be at the beginning of July, or sometime after October 8, due to Terrell's work. However, when they schedule it is when it will be. For stuff like this, you re-arrange YOUR schedule for them.
What's going to happen after the surgery?
Lexi will stay in bed for about a week, and then the following weeks she will spend her days doing some intense PT to get her going again. After that, we will continue to work intensively with her, and all her cool doctors and therapists and get her to be as strong and normal as possible. This surgery, because it is a long-term thing, will require WORK. Her treatments do the same thing, but because they are temporary, the bounce back time is quicker. We will be "living" in Primary Children's during that time. Most likely a month.
Where can I learn more?
http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr
http://en.wikipedia.org/wiki/Rhizotomy
Her team:
Neurosurgeon: Dr. Walker http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0030058
Rehab Specialists: Dr. Gooch & Beverly Krensky http://utahneuro.com/about_us
OT: Brian Gibby, Pediatric Rehab, Orem
PT: Ben Norton, Pediatric Rehab, Orem
Mommy: Kellie, super cool.
Daddy: Terrell, super cool.
Lexi: ROCKSTAR.
Until her appointment with Dr. Walker, that's the gist of all we know. We will email you as we find out and learn more. I'm sure you have tons of questions - ask them, but we might not know the answer yet. But feel free to ask and we'll let you all know as soon as we can.
