Howdy, friends. Sorry I've been out of pocket of late - lots of stuff going on, which I will discuss in more detail in a bit. But first, let's take a look-see at this week's MOJO MONDAY sketch...
Cool, don't you think? It comes from the marvelous mind of Mary Fish. If you're not familiar with Mary, she's a big-time Stampin' Up! demo; go to her blog and I swear, the next time you look up, you will find several hours have passed. She's got one of those studios/blogs/businesses that I fantasize I could have if I were organized and disciplined. For me, being organized and disciplined is a pipe dream of its own, but before I go off on that tangent, let me show you what I've put together using Miss Mary's sketch.
I used Your Next Stamp's new World Love set, which I *LOVE*. It comes with several great sentiments, but this one is my favorite: Love one another with no regrets. In order to fit it with the sketch the way I wanted, I cut up the sentiment and layered it on a kraft panel. Again, I'm trying to keep it clean and semi-simple, and I even went so far as to eschew patterned paper (sacre bleu!). The image was colored with Copics, and the kraft background panel was embossed with a Cuttlebug embossing folder. The red layer was cut using MFT's Bracket Tab Die-namic. I couldn't resist tying it all together with a little bit of plaid ribbon.
Go by the Mojo Monday blog for all of the details about how to play along with this week's sketch and kickstart your Mojo. For more visual inspiration, visit my fellow Mojo Makers to see how they interpreted this week's sketch:
It's been a while since I've blogged about Carter and our ongoing efforts to help him maximize his mobility. For those new/first-time readers, my youngest son, Carter (age 7, in 1st grade), has cerebral palsy. Though my blog is mostly crafty, I do occasionally share about 'real life' and particularly about Carter's therapeutic journey. I've found a lot of helpful information via the blogosphere over the years, and when I make my own 'discoveries,' I feel obligated to share that information with the hope that it might help another kiddo/family. For a historical perspective, follow this link for all of my CP related posts (or at least all of the ones I've tagged. Since some Carter/CP posts may be tagged under kiddos & family, here's a link to those posts, too).
For approximately the past year and a half, we have been following a fairly routine therapy schedule. Besides the PT, OT, and speech Carter gets in school, we have weekly physical therapy sessions, bi-weekly occupational therapy, and for fun, weekly music and hippo-(aka horseback riding) therapies. This is a lot less than what we've done in the past (funny, because as I read over that sentence, it seems like a lot, but compared to going to PT three and four times a week as we did for a year or so following Carter's selective dorsal rhizotomy, it's nuttin'). But, since he's been in school full-time, he's getting a lot of what would be PT and OT just keeping up with his classmates and doing his school work. Plus, you've got to let a kid be a kid, you know?
Anyway, this fall, I noticed that Carter seemed to be falling more than usual. He walks independently, but his walk is somewhat of a stagger (think Captain Jack Sparrow after a bit of a bender), and when he gets off balance, he falls. When we go someplace like to a mall or anywhere we think will involve a lot of walking or stairs, we go ahead and use his wheelchair. Most of the time, he motors along on his own two feet. It may not be pretty (well, it is to me, because I know how long & hard Carter had to work to learn to walk), but he gets the job done.
So the falling seemed to be increasing, and upon reflection, I felt that he really hadn't progressed or gotten stronger over the past six months or so. As most moms of special needs kids can probably tell you, you 'just know' when it's time to go see the experts to see what's next. Unfortunately, I've found that the experts I trust (outside of the regulars on Team Carter) are few and far away. I figured we would be going back to the Mayo Clinic in Rochester, Minnesota.
My husband, though, had heard from a senate colleague about a place right outside Oklahoma City that he thought we should give a try. I agreed, figuring it couldn't hurt, and that we could always go to Mayo after the appointment if this doc turned out to be like most of the others. To spare me from having to re-write all the info that transpired from that visit, I'm going to cut and paste some language from an email that I sent to several friends:
We had a doctor's appointment for Carter with a new-to-us doctor at Children's Center in Bethany, OK. He's a physiatrist (in other words, he specializes in neuromuscular disorders and how to improve the quality of life for patients with such issues) named Dr. Ed Wright. Anyway, he was terrific and gave Carter the most thorough exam he's had outside of Mayo. Plus, he boiled down the overall issues facing us/Carter with a conciseness and eloquence that I've never heard before, complete with notes jotted on a whiteboard. I think I figured he'd just say "Keep on keeping on," but he didn't. He said that he believed Carter's bones had become twisted from contractures/muscle spasticity and that he needs orthopedic surgery. He said he recognizes that we don't mess around regarding where to go in a situation like this (in other words, we'd go to whatever place considered the best as opposed to what's closest or most convenient), and therefore the two places he would recommend we look into were Gillette Children's Specialty Healthcare in Minnesota and Shriners' in Shreveport, LA.
After doing some research, we've decided to pursue treatment at Gillette; it has a center that specializes in CP and it also has a lifetime care program, meaning that if we find doctors we like there, Carter can continue to get care there vs. aging out when he turns 18. Shriners' is great (esp. if you don't have health insurance because its completely nonprofit and patients never even see a bill), but it's huge and doesn't specialize in kids with CP the way Gillette does. Thus, Sean, Carter and I will be in Minn./St. Paul from Feb. 7th (Tuesday evening) through the 10th (Friday morning). Carter is getting a gait analysis done, then we have an appointment with an orthopedic surgeon the next day. It looks like Carter's thigh bones and possibly knees and a shin bone are rotated and need to be straightened out, along with some muscle lengthening. They'll eventually do what's referred to as a Single Event Multi-Level Surgery (SEMLS). It's going to be probably the hardest, most painful procedure he's had done yet. :( They'll cut on bones, etc. After the surgery, he'll be in a spica cast (cast from the hips down) for 6 weeks recuperation, then we'll (Carter & I) be back in Minn. for 6 weeks in-patient rehab (by 'in-patient', I mean inside the hospital; in other words, Carter sleeping in a bed and me in a chair/cot; *fingers crossed* to even get a private room). The end result will be that he walks straighter (without the crouched gait that he has now - think knock-knees), and it will take a lot less energy for him to walk, too, which will help him get stronger & have more stamina.
So last week, we went to St. Paul, and I have to confess, I had huge knots in my stomach, anticipating what we'd learn. By nature, I'm an optimist, but after 7 years of this stuff... well, you gird yourself. We had the gait analysis done, and it was 3 hours of hard work for Carter: videotaping his walking; testing the pattern and distribution of pressure under his feet; measuring his strength, range of motion, spasticity, and muscle control; and hooking him up to special equipment that recorded his muscle activation levels and had reflectors to help special cameras record his movements which gather information for his motion analysis. It was high-tech, cutting edge stuff, let me tell you.
Here is a photo of Carter with all of his gear on, being aided by Sean (my husband), the PT, and the PT assistant:
The next day was the appointment that really worried me: the consultation with the pediatric orthopedic surgeon. As expected, he told us he believed Carter would benefit from a SEMLS. But he also gave us a wealth of information we didn't know, based on the information gathered during the gait analysis. For example, let's say you and I spend 100% energy to walk around; for Carter to do the same thing, he spends 424% energy. In other words, he works more than four times harder to walk than you or I do. As the doc said, "Going up a staircase, we're at about 160-170% energy. When Carter wakes up, it's like he's climbing stairs all day long and then some." You know, I have always had a tremendous amount of respect for this kid I have the good fortune of raising, but it really moved me to learn that about him. He works so hard and does so much more than rest of us, and yet he unfailingly does it with a smile, and he is truly the happiest person I know.
Carter's upcoming surgery will include procedures on both hips, both shin bones, and one of his feet. The good news is that he will only need to be in casts below his knees, and not in a full spica cast. This will allow him to be so much more mobile during his recuperation (not confined to a hospital bed set up in the living room and/or a special wheelchair that tilts back with both legs stuck out straight; we can use a regular wheelchair, and it will be MUCH easier to leave the house and avoid cabin fever), let alone the bathroom issues a spica cast would have entailed. The doctor assured us that pain management was typically not that big of an issue (and this was what really had me worried the most), and seeing as Carter has a fairly high pain threshold, it probably wouldn't be much of a problem. The cherry on top was that after recuperating at home from the surgery for about 5 weeks, we would then only need about 1-2 weeks of inpatient rehab at Gillette -- MUCH better than the 6 weeks I'd read about.
So, while all of this is still a very big deal and nothing you'd volunteer for, it feels far more manageable than it did a week ago. And that is truly a blessing.
Speaking of blessings, after the doctor's appointment, I was able to introduce one of my BSFs to my guys, which made me very happy. Here's my bestie Amy Rohl, who crossed the border from Wisconsin, to visit with Mr. Carter...
Carter's ongoing love of Thomas the Tank Engine is well-documented, and she must be clairvoyant, knowing we'd need this to snuggle up in today, our first SNOW DAY of the year! Check out the awesome little tag, close up...
We're waiting to hear back from the doctor about when we can schedule the surgery, but we figure it will probably be late March or early April. In the meantime, I'm trying to get back to normal after having been out of town for 9 days over the past two weeks (while still keeping up with homework and other obligations). This picture of Carter (taken at his brother's basketball game on Friday night, a few hours after we got home) says it all: