It Goes Both Ways

This week Charlie and I have been talking about cows. Riveting, no? I assume this is why you're reading this blog--for the incredible discourse on bovine populations. Anyway, our usual cognitive program was overwhelming me a little (it's possible everything overwhelms me this time of year), so I took a page from the Letter of the Week Curriculum and took a few basic things and just talked about them several times over the course of the week. I actually only did half the Letter of the Week curriculum because between therapy and therapy and you know, therapy there never seems to be enough time in the week for normal toddler stuff. Some days I would be willing to swear that it's the freakin' schedule that keeps the special kids behind. No time to talk about farms today! You've got stretching to do!



So this week we talked about cows and the letter A. There were some not-very-successful books from the library (Dear Lord, why does my child hate books so much?), puzzles, pictures, a video I checked out from the library and then decided I was kidding myself, and even some multi-sensory flash cards. I actually feel pretty good about the whole thing--I definitely think some of what I said sunk in. There was at least a glimmer of recognition when I said "a calf is a baby cow" for like the eighth time. Now, at the very least, I can tell St. Peter that I taught my kid about cows. . . that's an automatic in, right?





The teaching thing goes two ways though and I was reminded of that again this week. I was trading e-mails with another ABR mother who was feeling down and out. She's eliminated some of her daughter's spasticity, but with that, her daughter has also lost the ability to stand. Make no mistake, it's progress, but progress can be tough when it means losing something in another area.


If there's anything that Charlie's taught me, though, it's that progress is rarely linear. Maybe you knew a girl in high school who was both tall and blonde and a cheerleader and the Homecoming Queen, but for most of us, I think it's a little less cut and dry. Some of us have frizzy brown hair aren't really coordinated enough for any sort of group dance other than the line variety (this is completely hypothetical, right?) Life is series of starts and stops--a victory lap followed quickly by a skinned knee. A touchdown and a sack all in the same quarter.



Charlie "loses" skills all the time. I think we went three straight months where he wouldn't stand for a second. Now he's back and better than ever. He used to clap on command, but don't expect him to do that these days--he is so OVER clapping. He will give you five, though. Five is still cool (this week). As he works on one set of skills, another set is pushed to the side and while I know it's common, it can still be tough to take.





Almost every part of life feels the same. We don't immediately take our place on the top of the mountain; we don't have it all right away. We stumble. We lose ground, but we take a deep breath, maybe check out the scenery, and then we keep moving. Not giving up is often the biggest challenge.



Having a special needs child in my life is a constant reminder that life doesn't hand us everything. Hard work is part of the equation. I try my best to remember all that I do have and not dwell on what I don't. When life hands me a setback, I remind myself of all that my teeny, tiny baby was able to overcome and that helps keep it in perspective. I'm aware that this all sounds cheesy and sentimental, well, that's because it is--my kid inspires me. He makes me better and he reminds me every single day that most of the stuff I'm worried about isn't even a big deal.

***I really wanted to add some pictures to this post from our trip to the architectural salvage yard today, but my stupid battery went out right after I took a picture of nothing!****

Crazy?

So I'll let you guys tell me if I'm crazy. This should be fun.

Hubby got his annual bonus and there are a lot of smart things that I could use it on. And by smart, I, of course, mean more therapy of one sort or another. There's hippotherapy and regular therapy or HBOT, but the truth is that I want to spend it on one thing:

DISNEY WORLD!!!!!

This is ridiculous. I've been to Disney World no less than a zillion times. I've even been to Disney Land. My mom has a bit of an obsession and that means that every three years (minimum) she has to take a trip to Orlando. For me, Disney has been done. But for Charlie. . . well, he's never been. He's finally getting to an age where I think he would enjoy the music and some of the rides. I've looked online and there are tons of shows that I think might be fun. Some stuff will probably go over his head--he's never even heard of Mickey Mouse--but man I'd like to take him.

Sometimes I just get sad that all of the "opportunities" that I've given to Charlie involve therapy--every extra dollar and even some dollars I don't have go towards giving him the best life possible. This time I want to spend some money on some regular kid stuff--rides, over-priced food, and giant, singing stuffed animals. Besides, I really don't know when we'll have another opportunity like this--bonuses aren't guaranteed.

Hubby said he'd only agree if we went at the cheapest time and stayed in the cheapest hotel. My research tells me that the end of January/beginning of February is officially "Value Season." We're going to drive. Ten hours is pretty grueling, but one of the un-sung advantages of the CP child is that they can make awesome car travelers. Our regular trips to Dallas take about eight hours and he does a great job. It's not like he wants to go run around so videos, music, and toys make the journey go pretty smoothly. I stretch him out and swing him around whenever we stop, so Charlie's major complaint about car rides is getting changed in the back seat of the car--freaks him out.

So am I totally crazy to try to plan a Disney World trip with a two-and-a-half-year-old only a month in advance? You can be honest. I'll probably go anyway.

Me at Disney's MGM circa 1997--please note the super-cool jeans.

The Alternative View

I'm well-aware that some of you visit my blog because of your interest in alternatives. We are actively engaged in the alternative therapy ABR and people are naturally curious about that therapy and what is involved with it.

Well, I e-mailed ABR with questions about botox and back braces and I thought I'd share their answers with you guys. I'm going to summarize, though, because they have some fairly long explanations.

Firstly, I'd like to say that there is a lot of misinformation about ABR. ABR does not discourage parents from pursuing additional therapy if they would like and encourages us to have an open dialogue with our doctors about ABR. From my experience, Charlie's doctors consider ABR a non-entity. They've never heard of it, don't ask many questions, and seem satisfied once they hear that it is non-invasive. I dare say most of them immediately file it in what my father calls "the circular file." That's fine by me. I consider doctors resources and not all-knowing beings, so I don't need them to keep abreast of every detail in Charlie's life. That's my job.

On the question of Botox, I received a two part answer. The first part of the answer was, "no, Botox is in no way counter-productive to ABR." Good. I'd hate to be working against myself. The other part of the answer told me to be mindful that Botox is not FDA approved for children (no surprise there) and that at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine, they were cautioned that little is known about the long-term effects of Botox. She also advised me that Botox is not really a long-term solution, which I knew.

Her comments on the scoliosis thing were really interesting. Basically, she said that something like a back brace is designed to reduce further spinal damage and compression. It does not, however, make a person any stronger. ABR seeks to make a person stronger and also to create space between the vertebrae. So, we could get the back brace if we want--our decision. She then sent me pictures of Charlie's spine. The first set of pictures were taken during our initial visit to Montreal in October of 08. The second set in November of 09--roughly a year apart.


In this first picture you can see that Charlie's spine doesn't bend when he's tilted to the side. This is abnormal. A normal spine is quite bendy. Having a fused, locked spine can really impede your ability to get things done.

In this picture you can see that Charlie's spine is beginning to have some bend to it. It's not perfect, but being able to balance in the sitting position has become a lot easier and this is part of the reason.


There are several other structural changes to Charlie's body that I can see in these pictures, but I'll save all that for when they send me our annual review. For now, I know that if I go with the back brace or the Botox then at least I won't be working against myself. One less thing to worry about.

Hair Issues

Is is just me? Or does Charlie's hair suddenly look suspiciously like Kate Gosselin's?

Let's see them side by side, shall we?

He's so trendy.

Ruminating

I was going to title this post "licking my wounds." You see, a few weeks ago I shared that a local business person was interested in selling my artwork and stationery in her newly opened store. I was over-the-moon excited. Excited to be working with someone young and creative; excited to be out in the public eye a little; just plain excited.

Well, yesterday I sent her what I believe was my third e-mail saying that I had all of my products store ready. Mind you, she's told me very exactly how many pieces she wanted and I'd even done some stuff specifically with her location in mind. In response to my third e-mail, she replies in such a way that makes me think she has no idea who I am or what I'm talking about. If the e-mails weren't physically sitting in my in-box then I would swear that I'd dreamed the entire thing.

I tried to be upbeat and professional in my response, but it's hard to find the right words to say, "don't you remember? You told me you wanted ten canvases?!?" So off another e-mail went, but in my heart I don't think things are going to work out.

I'm hurt. My ego is bruised. I'd allowed myself to be excited--I told my friends and family, and now I'm going to have to tell them it's a no-go. I hate that. I feel like a failure which is never any fun.

Today I also got a very interesting offer to work on a project that's near and dear to my heart. It has to do with special children, and information, and hope.

So I'm wondering if this is a "sign." A sign to move in new direction, try something different, and maybe, just maybe do some good. I have to tell you, I miss the days where I felt like I was doing good on a regular basis.

Sometimes you get an answer, but it's not necessarily the one you expected.

Thinking hard on this one tonight.

Here's Charlie with the ABR machine on his head. It looks crazy, but I also think he looks cute with that goofy turban on his head!

Delightful

Last week we were all lying on the couch watching TV when our big, gray cat Max jumped up and tried to snuggle in. Charlie started trying to pet him, which he's never done before. When I say "pet" I mean pull his fur out, but it was still pretty cute.



Yesterday we went for a family trip to IHOP. When we put Charlie's plate in front of him, he lunged and swiped a piece of bacon off of it. We moved it out of arm's reach since he has a tendency to over-do on the self feeding. A few minutes later I spied him reaching and leaning with all his might until he finally snatched up a giant handful of scrambled eggs, which he then promptly shoved in his mouth, pieces of it falling everywhere. He's clearly inherited his father's table manners.


Today he was practicing standing with the OT and she told him to go ahead and dance. He promptly began smiling and clapping his hands. That he gets from me.



None of these things are huge in and of themselves, but little moments like these are happening more and more often. I'm getting many more chances to see Charlie's personality.


Leonid Bylum, the inventor of ABR, speaks often about the mindset of traditional medicine versus the mindset of alternative medicine. He proposes that traditional medicine is about "protecting" our children--preventing seizures, contractures, and dislocations. Alternative medicine seeks to enhance the lives of our children. It pushes further; it expects more. Armed with this thought, I sought to enhance Charlie's life. His seizure medicine was giving us no problems and his doctor was probably never going to suggest a change.


It can be scary to make a big decision about something like seizure medicine or botox. Maintaining the status quo is comfortable and no one will ever fault you for just doing what the doctors tell you. Venturing out on your own is a solitary experience. If something goes terribly wrong you will have only yourself to blame.


This time, I seem to have made a good decision. Keppra seems to allow Charlie to be more active and present. I'm not cocky or even self-assured, though. It really is a guessing game and this time it worked out.





A rare family photo

PS: Wednesday is the last day for the giveaway on my Facebook page. I am so loving seeing so many familiar bloggy faces over there.

Murphy's Law

It does figure that a good doctor's appointment will be immediately followed by a bad one. Well, bad is a relative term. I'm facing a lot of yuck after our second appointment of the week, but truthfully I still feel pretty good.

After some shuffling, we finally got into to see the physiatrist.

He was EXTREMELY pleased to hear that Charlie was standing, pushing himself into the seated position, and even taking a few steps. He had a student in there and he began talking about Charlie's tone and his future "diplegic gait" and I'm not gonna lie--I loved hearing him call Charlie diplegic. Charlie isn't diplegic, but the truth is that we've made a lot of strides with Charlie's upper body and even though the doctors and therapists don't want to believe that it's ABR that's helping him, I know that it is. (for those that don't know, kid's that are diplegic are affected mostly in the legs. Charlie is affected all over with one hand that's pretty good)

I asked him to roll over and push up so I could take a picture and he did! Pay no attention to the over-flowing garbage in the background:)

With all of Charlie's gross motor gain, the doctor decided that Baclofen wasn't really an option for us any more. Now, he's all about the Botox. We discussed the pros and cons, he gave me a handout, and I promised I'd think about it. I will think about it. It's a hard decision. Basically, when it comes to Charlie I have a list of priorities. They are as follows:

1. Avoid painful orthopedic surgeries
2. Avoid other painful surgeries
3. Avoid filling his body with chemicals.
4. Allow Charlie to live as normal a life as possible--now and as an adult.
5. Keep Charlie comfortable

Please note that the achievement of therapy goals is not one of the reasons I do things. I don't believe in gross motor gains at all costs. Charlie does not need to walk for me to be happy. I'd much rather him live life in a wheelchair if that means he's more comfortable. This is not every parent's wish, but it's mine and right now I'm in charge. If later in life, Charlie has a different opinion then I will defer to his wishes.

As far as I can tell, the only reason I would want Botox for Charlie would be to prevent his hamstrings from developing scar tissue. Scar tissue sounds painful. There are other reasons that the PT might want it, but that's the only one that matters to me--comfort. The doctor also said that this might prevent hip dislocation, which means it meets my number one criteria. So that's one priority against and two for it--I'm considering it.

The news that I really didn't want to hear was that Charlie's scoliosis in currently at 18 degrees so he now wants us to visit with the Orthopedist. Bletch. I really don't think I can take another doctor's appointment right now, so I think I'll be scheduling that one in the new year. Also, if you refer to my list, orthopedic surgery is enemy #1. I hope to avoid it at all costs. I did a little research (aka Googling) and 18 degrees isn't terrible, so they'll probably just follow us closely at this point. Still, I don't like adding doctors to my sheet--I like subtracting them. Adding an Orthopedist to my list is a double whammy.

One last thing! I've started a new giveaway today on my Facebook page. This week's winner has a chance to win a free print AND a pack of stationery that I design just for them. I am really having fun with the holiday giveaways so go over there and leave me a comment telling me your favorite Christmas song.

Charlie has yet to find a Christmas song that he likes. Maybe if Lady Gaga wrote one.