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Facebook Post from August 22, 2013

 Amy Ellis Wyrick

Just a little background story . . . I mean little as in 1 pound 15 ounces. May 11, 2002, my body was d.o.n.e. with this first pregnancy. Headaches, edema, dizziness - this is what pregnancy was like right? Wrongo. This is what toxemia is like! So 10 weeks early, mighty Meredith entered this world - a force and a red headed fighter. It wasn't so awesome at first. Amy in her own recovery for 48 hours, Ted on a flight out of town and arrives 12 hours post birth and little Mere in the NICU on a ventilator. But we ride out a 7 week stay in the NICU with some ups and downs and take her home in July 3 weeks before her due date and just shy of 4 pounds.

Week 2 in the hospital, we learn that Mere has had a brain bleed. It was almost a passing report by our NICU nurse and we took it as that. She was stable and that's what mattered. We knew that preemies often have developmental delays, but at 18 months, our little girl wasn't close to walking yet but was super cute holding on to things as she stood on her tip toes. Tippy toes. All the time.

Developmental delays continued and what she didn't do physically, she made up for with books and curiosity.

Age 2 1/2, our doc in Bham finally makes the diagnosis. Still to this day we wonder why someone didn't just say to us "hey, you know she's susceptible to cerebral palsy" or something like that. Ted and I are straightforward peeps that look for solutions. At any rate, we drove on with this kiddo and gave her a brother too to push her along. They learned to walk together and are pretty much like twins with development and height and weight now.

So walkers and orthodics and some eye challenges that go with cp as well, we are just working through getting Mere every opportunity she needs. 

Meredith is considered mild on the cerebral palsy spectrum and is affected only physically with vision and movement. CP causes muscles to overfire and become very tight not enabling the person to have a full range of motion and although they say the disease isn't degenerative, the symptoms surely are as the bones grow and the muscles and tendons tighten more. 

This surgery (SDR) is a neurological surgery that involves permanently severing sensory nerve roots (not motor nerves) to alleviate the monster we call spasticity - the cause of most of her movement challenges.

Okay, so that's the cliff note version! For those of you who haven't finished your coffee yet and need to mess around on the computer more, google "sdr" and/or "dr. t s park" and you'll get more info. 

4-5 hour surgery Friday morning followed by a 5 day hospital stay and some heavy duty physical therapy to follow for the next few years. Another surgery will happen in December as well. Details later. One step at a time. Literally 

Thanks for reading and for your happy thoughts and peaceful prayers for us. We feel them. We really do!

Facebook Post from August 27, 2013

 Amy Ellis Wyrick

TV time, naps and now physical therapy 2x a day. It's going to be a long recovery for Miss Mere but we were totally prepared for this (for the most part) and her attitude has been tremendous. So this little video may raise some questions for some of you. "Wait, wasn't Meredith walking and even running before this? What's wrong with her? What the heck did her parents elect to do to her?" So here's that explanation . . . . 

A major component of cerebral palsy is spasticity. This basically means that the dominant sensory nerves to the muscles (especially in legs and sometimes in arms and hands) are constantly telling the brain to tell the muscles to contract. All the live long stinkin' time. This is why you see kids with CP crouching and almost mimicking the stance of fetal position. Those stubborn nerves just won't let those muscles relax to allow cp kids to straighten their legs and even arms and wrists. The leg tightness has always been relatively apparent with Meredith and with each growth spurt, the bones grow and those muscles try to keep up but instead just get more stubborn and tight, pulling on joints and even affecting the bone structure. Mere's body pulls more inward every year especially at the hips which affects her knees and pulls at the calf which affects her ankles. You can stretch stretch stretch, but those spastic talking nerves will continue to be bullies. And her teenage and young adult years' prognosis predicts cp symptoms much more pronounced. Walkers, wheelchairs, reduced endurance. Um, no. That's just not acceptable and (after years of research and doc visits and forum participation) we found THE solution!

To alleviate spasticity, you have to just shut those nerves up. Totally take them out of play. Forever. Yep, sever them. Holy crap, I know - that thought kept me and Ted awake many a nights. But the MOTOR nerves stay intact. They are 100% there and ready to move. And now the other 33% of the SENSORY nerves have to come off the bench to tell the muscles how to act. Now these sensory nerves are team players but they've been benched so long that they don't know the plays of the game and they haven't worked out in the gym because the bully sensory nerves told them they would never play. So they are weak and uninformed. (Ted teared up hearing his wife explain this football metaphor to my mom last night.) 

The long and short of it - Mere is learning how to walk. But learning how to walk without spasticity in charge this time - the right way this time. She's making amazing progress thus far. She has core muscles to support her and it's really about getting her comfortable with her new feeling legs. She says they feel a little tingly, sometimes numb and a lot lighter but weak. Her hamstrings and calf muscles are still tight and another surgery will alleviate that tightness more and be performed later this year - also in St. Louis. Shorter hospital stay and recovery. 

So we are on the right road. And Mere has been enjoying the tv that is actually attached to her bed as well as room service whenever she wants it. They do it right here when a kid isn't itching to go home!

Thanks for taking the time and interest to keep up with us! We continue to feel all of your prayers. And Mere loves your happy comments and posts, funny texts and emails! — at Children's Hospital.