Getting Settled

Yesterday I'm pleased to say Cleveland public transportation came to my rescue big-time. Their paratransit service takes me anywhere I want to go for $1.75 one way/ Not bad given the price of gas! But on to more important things, namely Sam.

Day two she was still very up-beat and willing to work despite the grueling workouts. Her team of doctors and therapists were greatly impressed by her attitude. But today things went a little rough. She was hurting pretty bad. The speech/memory evaluation came back today as well. She's showing some significant short-term memory problems. They think it could be due to the neurontin she had a while back, but she's been off it two weeks. They still want to watch it another week before getting worried. They may also call in one of their rheumatologists to examine her.

If you want to drop Sam a note, her address is:

Cleveland Clinic Children's Rehabilitation Hospital

Samantha Freeze, Pain Program

2801 Martin Luther King Junior Drive

CVleveland, OH 44104

Sam's First Day

The day started out pretty rough--with a three-hour wait for a taxi. Apparently Cleveland has some MAJOR transportation issues (laughs)! Anyway, at the hospital, Sam started off running with back-to-back evaluations and therapy classes. By the end of the day she was exhausted and hurting pretty bad. The picture above is of her private room. It's a gorgeous older hospital that's been brought up to date with state-of-the-art equipment. She even has a flat screen HDTV in her room! The nice thing is she's made some great friends already.

The day ended with another long taxi ride for me. I guess I should say taxi WAIT. I was pretty pooped, stressed, and crabby, too. But after a good night's sleep, I'm ready to hit it again. Will report in tonight.

Cleveland Clinic

Wow, TWO trips to Cleveland in one week! Wayne's poor car just put on 3,000 miles!

Anyway, here's the deal. The first specialist believes Sam has a bad case of fibromyalgia, not RSD. She has the tender points which are classic to fibro, and her pain is in multiple areas. RSD typically starts in one area and can grow out. We'll know more tomorrow. But the doctor gave her a prescription for a TENS unit (which we have yet to get because of insurance paperwork), and he validated the neurologist's opinion that she should do the three week therapy program. The Cleveland Clinic actually wanted her to go to Boston Children's Hospital, but Cleveland Clinic could get her in sooner. Starting April 21--tomorrow--to be exact.

Sam's Monay startsw at 8:30 with evaluations by the five doctors and multiple therapists (aqua, physical, ocupational, recreational, and psychological/chronic pain) who will be treating her. I have weekly status meetings with the entire team as well. Samantha's an inpatient at Cleveland Clinic Children's Hospital at Shaker Campus for two weeks, then she does therapy for a week as an outpatient from 8:30-4:30 to transition back to school. I am only able to visit her after the day ends around 5:00.

Wayne went back home to take care of Chris and the animals while I managed to snag a good deal on a two bedroom apaertment at the Cleveland Sight Center (a place that serves blind and visually impaired people). We'll take a taxi tomorrow since we have so much stuff to haul, but after that, I've got a one-month pass on Cleveland's paratransit service, so getting back and forth daily shouldn't be too ugly. At least I hope not.

Next Wednesday through Sunday Wayne will have the house to himself because Chris will be at Disney World competing with his band. Also while I'm gone, Wayne will have to sit in for my band board meetings and duties. It's a great group to be involved with though.

Drumline Season Winds Down

This coming Wednesday, Chris and his drumline head for Dayton, Ohio for their final competition of the season. To celebrate the end of the season, the kids are going out for a few rounds of laser tag after school today.

The kids have worked their behinds off and it shows. I'll video tape their show at parent's night Tuesday so you can see how much the routine has evolved. It's been a challenge for CJ, but he rose to the occasion and made some good friends to boot. It remains to be seen whether he'll do it again next year, but odds are the directors will con him into it.

He no sooner gets back from Dayton and he's off to Disney World in Orlando for marching and concert band competitions. The kid is better traveled than I am!

Chris will be bach'in it while we take Sam to Cleveland for her big appointment. Luckily we have some good neighbors and drumline moms who are making it possible for him to stay alone. It'll be interesting to see how he does. He'll have his hands full, too, puppy-sitting Chee.

Reflex Sympathetic Dystrophy Link

In case you want to learn more about RSD...click here.

Complications

For those who didn't believe we really smuggled Chee into the hospital for a little pet therapy, here's proof of our scandalous deed. You should have seen the smile on Sam's face when we handed her the little guy... It was well worth the risk of getting caught!

On a more serious note, I have some major updates where Sam's health is concerned. After her hospitalization, the poor kid had four more ER trips for pain control before they got sick of us and cut off her Toradol injections. The last time Toradol didn't even cut it and they had to follow it with Dilaudid (the med that's eight times stronger than morphine). Luckily, all this happened right before her two-week followup with the neurologist.

Upon examining her and seeing the continued pain, he said it wasn't just costochondritis because it should have been getting better, not worse. He barely touched her chest which caused her to wince, then made the declaration that this could very well be Reflex Sympathetic Dystrophy. He then referred us to the Cleveland Pediatric Pain Clinic where Sam has an April 14th appointment with a peds pain and RSD specialist.

If the diagnosis is confirmed, she may end up with a surgically implanted pain meds pump followed by an intense three week long chronic pain rehab program, all to be done some 750+ miles away in Cleveland, Ohio. We'll obviously know more after the 14th. Poor Chris will be staying home alone with support from neighbors and drumline parents since the drumline heads to Dayton, Ohio for a world championship competition on the 18th and have numerous extra practices.

Sam's teachers have been sending work home to make up, but it hasn't been going too quickly with all the pain meds. We've applied for the county's homebound program which sends a teacher to the house a couple times a week, but we're not sure how that will work with Cleveland in the mix. We're trying desperately to salvage her 8th grade year so she doesn't have to repeat the grade, but it just may not be doable.

Samantha's spirits are holding up for the most part, though there have been some angry outbursts as she wonders, "Why me?!?" Watch the blog for further updates.