Saturday, February 28, 2009

Back and Forth

So. . . I hesitate to say that Charlie has been sick because I feel as if we are battling this yucky sinus/congestion thing nearly every week. I've paid out a bunch of co-pays and he never has a fever and never has an infection. He's always just an irritable, snotty, funky mess and it lasts a few days and then it's gone. Not surprisingly, when it's cool he feels better and when it warms up he feels worse. I think it's pretty clear that the kid is an allergy-fest. I may risk one more co-pay and see if he's old enough to take zyrtec or something. I don't like the idea of drugging my kid, but he snores like an old man and it's effecting everything else, so I think it would be worth it if we could put a stop to it.

Anyway, why am I whining about my kid's allergies? Not because it's interesting!

You see, on Monday we took Charlie out in his gait trainer (walking contraption). Quick aside here, when I first heard the word gait trainer I HATED it--I have no idea why. Moving on! So we took him out in his gait trainer and for the first time ever he was actually taking steps on his own. Just one step and then with a little help the other step, but this is a huge improvement over his previous work. By the time we finished the session his therapist was wondering if we should order him his very own gait trainer, so he isn't dependent on a loaner.

Well, on Tuesday the congestion started and he was so irritable and weak on Wednesday that I could barely get him to sit up right in his high chair, which is never a problem for him. Every time we put him in the gait trainer he just sagged it in it. Le sigh.

Now I've let him rest up and we've got a cold snap coming, so hopefully he'll be feeling better soon. In the mean time, I WANT TO PRACTICE WALKING!!!!! I am so impatient and I'm at the point where I'm dying to take a little video of his foot action, and he's just not sleeping well at night and this makes his pretty uncooperative during the day. Seriously, has a person ever died from impatience?

So, my baby's first steps:Yay!


Wednesday, February 25, 2009

It Changes You

When Charlie was born I was so scared that he was going to change me in a bad way. I was afraid I'd never be happy again. I was afraid I would become bitter. I was afraid that I would forget how to enjoy life and be thankful for what I have.

Well, really, I realized that our lives are full of events and all we can do is react to them. How we react to them is our choice. I feel pretty confident that for the most part I'm the same girl that I was before Charlie.

Yesterday, however, I realized that I have changed some. My brother's girlfriend works at an Oil and Gas company and all the big companies rent out hotel suites or restaurants around the French Quarter and then print out special invitations for people to come. She had invitations to three different events and we were excited because they all have open bar and free food.

Well, as I snaked through one location I found myself wondering how a person with a wheelchair would get around the place--not easily is the conclusion I came to and it made me a little sad to think that maybe something like this wouldn't be a possibility for Charlie (as an adult--God help me if I brought my baby to the Quarter at Mardi Gras). Later we were up on a balcony on Bourbon throwing beads at the tourists. Not to worry--I didn't encourage anyone to remove their clothes! Anyway, down the street I saw two parents pushing their adult son in a wheelchair. Looking at him, I thought it was a pretty safe bet that he had cerebral palsy. I got one of my prettiest bead and started waving to his dad. He saw me, I motioned that the bead was for his son and threw it to him. He put the bead around his son's neck and told him something in his ear. Then, the man in the wheelchair looked right up at me, smiled, and gave a bit of a wave. Incredible feeling.

You know, if the way Charlie is going to change me is to make me more observant, more attuned to people with disabilities and more likely to reach out to them, well, I'm fine with that.

Friday, February 20, 2009

ABR Questions and Answers

People have a lot of questions about ABR and like most parents trying it out I think that it's hard to answer many of them. I thought I'd take a shot at answering some of the ones that seem to come up the most.

What is ABR trying to accomplish?
Ever seen an older person with cerebral palsy? Their arms and legs are often twisted at impossible angles and it looks uncomfortable or maybe even painful. Well, while your child's brain injury doesn't get worse, the structural defects that they have do get worse over time and movement becomes more and more difficult. Medicine's current course of action for the defects includes hard plastic braces (AFO's, botox injections in tight muscles, and orthopedic surgery). I have a friend whose grown cousin has CP and she says that she can't count the number of surgeries he's had at this point.
ABR seeks to correct these defects with another way. Much like the way deep-tissue massage can work out the kinks in a muscle group, ABR uses light compression to restore strength and volume to areas that have collapsed or lost strength.

Uhhhhhh. . . what do you mean by collapsed?
Sounds pretty serious, right? Sounds like something you'd notice, right? Well, in some cases the answer is yes, but in other cases it's less obvious. We first noticed Charlie's collapse about two weeks after he was born. He had a deep depression in the middle of his chest. The doctors called it a pectus. In other areas of his body it's less obvious and is more like a failure to develop then an obvious deformity. Before starting ABR, Charlie had no neck--zip. Now, he has one.

Hubby changing Charlie's diaper. If you look in the middle of his chest, you can see a deep depression.

My computer tells me that this picture is from early October 2008. Complete neckless wonder.

Hello? There's a neck. This was taken Valentine's Weekend.

Who cares if this stuff is collapsed?

This a good point. ABR won't fix your child's brain, so what's the point of trying to fix the structure? Well, the bad structure is responsible for a lot of movement problems. Try bringing up your shoulders by your head and then lift up one of your arms--not easy. Imagine if these inadequacies were spread out around your entire body. ABR theorizes that spasticity and over-looseness are two side of the same coin: because your structure isn't balanced, the body respond appropriately--loose where there is too much space between parts and tight where there isn't enough.

Why can I only learn about ABR in Canada?

The only ABR center in North America is located in Montreal, Canada. The reason is simple. It's the only place where somebody went ahead and opened one. Here's the thing. Leonid Blynum spent many years perfecting a technique for working on the structure of kids with brain injury. Along the way he worked with his father who was a medical doctor and also Linda Scotson who runs the Advance Center in England. His love appears to be in the research--not in the implementation. Individuals start ABR centers to teach people how to implement Leonid's research. Annie, who runs the center in Montreal, tried ABR after experimenting with eighteen other therapies unsuccessfully. She has a child with CP. She believes in ABR so much that she opened a center in her neighborhood and now people fly there from all over the US to learn about the techniques. Leonid isn't running around teaching people techniques. He evaluates children and makes recommendations for exercises based on their structural deficits. He spends the rest of his time perfecting techniques and doing more research. Lately he's been in Singapore a lot researching how to work on the bodies of people of Asian descent. So if we want a center in the US we'd have to find someone who wanted to open one and I haven't met any volunteers. Trainers from the Canadian center do come to the US several times a year to cut back on family's overall travel expenses. My latest satellite visit was to Plano, Texas, which is a one-day drive from where I live.

I've heard that there's an ABR machine?

There is an ABR machine but in most cases they make you wait three to six months before they let you have one. ABR machines are not cheap. They rent for 350 Canadian dollars a month. NOT cheap. Machines provide bulk hours of therapy to the abdomen, but they aren't as effective as hours you do with your hands. I look at like this: if you have a kink in your back you can go to a masseuse or use one of those massage chair things. The massage chair thing is pretty good, but not as good as having someone really get in there. The benefit of the machine is that you can strap it on your child for the night and they can get therapy while they sleep.

If this method is so great then why hasn't it been proven and why won't insurance pay for it?

ABR is still in it's infancy, but I believe that it is getting closer to becoming an accepted form of treatment. Insurance doesn't pay for it because there haven't been any double-blind studies proving it's effectiveness, but that day may be here sooner than we think. ABR techniques were developed over time working with several people. One of those people is Linda Scotson at the Advance center in England. The Advance Centre has actually brought researchers in and have begun to show that their techniques are effective. A synopsis of the study can be found here.

ABR in Canada is on a similar path. They have PhD student who is at the center weekly and I know that I signed a release allowing Charlie's info to be used for reasearch purposes. At least one paper has been written regarding ABR's effect on scoliosis and my understanding is that it will soon be presented at a Conference in Australia. The center in Montreal has just been designated a research center by the Canadian government, which means that now money will exist for the sole purpose of researching ABR and seeing whether or not it is an effective form of treatment.

So. . . this guy Leonid is a mathematician? How about some credentials? It's true that Leonid is a mathematician and he became interested in restoring the structure of the human body from a research angle. While he may not be full of credentials, his staff certainly is. Both of the trainers that I worked with are also physical therapists. I'm not sure if that is a requirement, but it does feel good to know that they are trained. Another mother asked our trainer in Plano, Gavin, why he'd decided to become an ABR trainer. His response was simple: "they were getting results and I wanted to see how they were doing it." Here is an extremely detailed article on Leonid if you'd like to read it. Frankly, I couldn't understand all of it, but maybe you can:

Is it true that ABR isn't compatible with other therapies? While is Canada, we bandied about this question a lot. The only therapy that they said was incompatible with ABR was a therapy called patterning, which is taught at The Institutes in Philadelphia. A couple of things makes this confusing. One, some parents choose to only do the the ABR program. The other reason is because ABR deems many traditional therapies ineffective. Their theory is that it does no good to try to improve function if you don't improve the structure. The caveat to this is that they acknowledge that there are benefits to therapy beyond function--having your child upright can incourage digestion, spatial awareness, and social interaction. If I could I would upload the video of me grilling Gavin and him trying to avoid telling me his opinion on things like standers and AFO's. For the record, Gavin and others at the Center completely agreed with my decision to continue putting Charlie in the stander.

Did I answer your question? If not, leave me one in the comments and I'll try to answer. If I can't answer then I recommend sending an e-mail directly to the center. They're about a million times more helpful then most of the medical personnel I meet in the US.

Wednesday, February 18, 2009

Success Story

Today Charlie's teacher (special instructor) was telling me about a little girl that she worked with about seventeen years ago and who she recently saw at a wedding. The little girl, I'll call her Anne, is seventeen years old and has been diagnosed as having cerebral palsy effecting all four limbs. She uses a power chair to get around and uses an augmentative communication device to converse with others. She's also on the A/B honor roll and in all regular education classes.

I'm sure there's not a parent in the world who wants their child to be in power chair and using augmentative communication--that's never the first choice. It is nice to know, however, that with these limitations she's still figuring out how to be successful.

Give you hope, right?

Tuesday, February 17, 2009

On My Mind

My To-Do List is threatening to take over.

On my mind today:
  • Trying to cook more healthy meals for my family
  • Adding more categories to Charlie's intellectual program
  • Sending a long-overdue e-mail to an old friend I found on Facebook
  • An unpaid writing gig I've agreed to (details on this coming soon)
  • Inventory for my business

This doesn't include stuff like paying bills, washing dishes, ABR, or Charlie's other therapies. I'm trying not to hyperventilate, but I am feeling a TAD overwhelmed.

Sunday, February 15, 2009


Well, I intended to update every day, but hanging out and having a good time won out in the end, so here's a recap of the rest of our trip. . .
I mis-typed the other day when I said that I was going to be learning five new exercises--I will be learning four new exercises. We are working on a new part of the jaw, the place where the neck meets the back, the sides of the rib cage, and the "clavicular groove." I like saying clavicular groove--I think it sounds like a crazy dance move.

Working on the rib cage area while Charlie naps.

Gavin, our trainer, spent a little time looking at Charlie's various moves and also his structure although they won't do a detailed evaluation until we return in May. He did say that the way Charlie rolls is excellent and indicative of progress, so that's a good thing! I told him a little bit about the work we're doing with Feldenkrais and he seemed very pleased to hear about that as well.

I guess the final thing that I'd like to say is to comment on one of the un-spoken benefits of ABR--all the parents. Parents who pack up their stuff and attend ABR training are their own breed--they are aggressively pursuing a lot of options for their child. I'm not saying that you have to go to ABR to be this way, but I do find that parents who are willing to fly to Canada to try an unproven therapy tend to be this way. I spent a lot of time trading information and "product reviews" with Fletcher's mom and that's extremely valuable to me. We also spent some time talking about our kid's structure and their various strengths. Erin gave me some ideas for working on speech and I showed her some of my favorite toys--I have a bit of a toy obsession. I am constantly trying out new toys to see if Charlie can work them.

Fletcher's mom and I. Apparently Charlie find picture-taking uninteresting.

So, we're getting ready to head home now. I had a blast in Plano, ate a ton of delicious food, and now I have four new exercises to try.

My SIL and I napping while Charlie plays.

Friday, February 13, 2009

Day Two

Well, we had our first day of training today and it was very informative and I was very happy to be there. I was about thirty minutes late which was not the best, but I left with plenty of time and then drove in precisely the wrong direction.

Our first day of training was with Fletcher's family and it's fun to catch up and chat with people you mostly only know through the computer. In true Charlie form, Charlie took little interest in other children and mostly wanted to crawl around on the floor. He tolerated a small amount of demonstrating and then fell asleep for an hour. I found out that we're going to learn five new exercises while we're here and I could be more thrilled. We got started on two of them today and we'll be learning more tomorrow.

Afterwards we went and ate Chipotle with Fletcher's family. It was nice to talk about exciting stuff like Prevacid, Feldenkrais, and cognitive programs for our kids. Ok, it was nice for Erin and me--I'm not sure everyone else at the table liked it as much. Charlie quite enjoyed the chicken beans and rice that I picked out of my burrito for him, but I'm not surprised because he loves Mexican food as much as I do. Honestly, the kid has been eating non-stop since we left on this trip and I'm worried that he might explode soon if I'm not careful.

We spent the rest of the day taking it easy: we spent a long time at a stationary store and probably an equal amount of time driving around being lost and looking for Benadryl--I forgot that I'm allergic to Texas.

Thursday, February 12, 2009

The Eagle Has Landed

Well, we had a supremely nice trip here and we are officially in Plano. We left from Baton Rouge around eleven-thirty and we were in the Dallas city limits by six-fifteen. This included some long stops for diaper changing/water/potty breaks, so I think that's pretty good time.

We stopped and got Taco Cabana for dinner, which means I've pretty much completed my personal to-do list.
We're staying at a hotel that was described as "recently remodeled." It would be more accurate to say that it is in the process of being remodeled. Our room is bright and shiny and everything looks new, which I love. There are rooms down the hall, however, that don't have doors.

I was pleasantly surprised to find that the hotel had an indoor pool. I didn't have a bathing suit for myself, but I did let Charlie sit in the water and splash. We tried the pool last June and he didn't really like it. Today he absolutely love it. I think he could have stayed in there all night long.

Tomorrow we have a double session of ABR, so I'll try to update when I get a chance, but it may be late.

All of these beautiful pictures were taken by my SIL--aren't I lucky to have a such a talented photographer along for the ride?

Monday, February 9, 2009

Plano, Baby!

Well, we're sitting at home today while Charlie recovers from what must be his gazillionth illness. At this time last year, we were on house arrest and he was barely sick at all. This year, we're free to move about the country and he seems to be picking up EVERYTHING. This week it's a head cold of some type, which means sleeping propped up in the Boppy with Eucalyptus oil in his shirt. He's a toddler, so he hasn't grasped the concept of taking it easy. He'll crawl around for a bit and then cry because he's tired. We're not having therapy, so the day is stretching out in front of us with not a thing in store. It's pretty frightening.

We're resting up big time because on Thursday I'm driving to Plano, TX, for more ABR training. In case you've missed it, ABR is the alternative therapy that we do with Charlie to help with his cerebral palsy. I am SO FREAKIN' excited to be going to Plano, and believe me I couldn't care less that it's Valentine's weekend. My SIL is coming along for the trip and we're going to eat at Taco Cabana, do a little outlet shopping, and spend an evening watching television that our husbands don't approve of. Good times. Also, I'm going to have the chance to see some of the wonderful families that we met in Canada during our first training session. And, of course, there's the fact that I will be learning some new exercises to help improve Charlie's quality of life. He's gotten SO much stronger over the last four months and I can't wait to continue with that improvement.

As I'm writing this, I look over at Charlie who used to SIT on his right hand it was so useless to him and I am amazed to see that he is grabbing part of his Nursery Farm with his right hand. It takes a lot of concentration to use it, but today I'm thinking that CP can suck it!!!!! Hi-ya!

Thursday, February 5, 2009

Little Bits

Sometimes it's hard to see how far your child has come when you can see how far they still have to go. Sometimes it's good to take a step back and celebrate where things are.

So where are we today? On Saturday Charlie will be twenty months old. This is both terrifying and amazing. There was a lot of question as to whether or not he would make it past his first week, so to see him travel so far and to thrive is is s wonderful thing. I try not to forget that.

So I looked around and tried to get a feel for the kinds of things a typical kid can do. Many, many of the milestone charts are geared towards gross motor skills, which is not our best area. When I try to find more than that then I find that Charlie is not SO terribly behind. He can't talk, but he seems to understand. He learns daily. He attempts to feed himself with a spoon and we are teaching him to drink from a cup using an independence cup:

He uses the top one. He also drinks from the faucet, which he finds completely delightful. He figures out how things work with a quickness that amazes me. He'll give you a kiss if you ask, but you can't complain if it's a little slimy. He shows people preferences and recognizes voices on the phone.

He's making some new advances as well that I'm thrilled about. In his walker, he usually just stands there. Now days he manages to make it move. He's still not taking independent steps, but he's starting to figure it out.

I'm excited to report that the Feldenkrais seems to be having a positive effect. I realize that I was conflicted because of the amount of energy it takes to go to sessions. Our practitioner is wonderful and she loves Charlie so much. He definitely seems to be developing a better awareness of his legs. I haven't said ONE WORD to his regular physical therapist about the Feldenkrais because I already feel like a bit of a loon with the whole ABR thing. Well, on Wednesday she said, "these last few weeks he's really been doing a great job with his legs." He pulled one up to attempt to half-kneel and he also has begun moving them a little while he's commando crawling. These are small things, but they are changes.

I the most exciting thing has been a overall increase in babbling. Yesterday he said, "Aggie," which in my sleepy haze sounded like Daddy. This morning he said "amma," which he has said once before, but it's been quite a while.

So, we're chugging along. . . slowly but surely.

I'll leave you with a video I took. In this video, Charlie has found a glass of ice that I accidentaly left on the floor of his room. He's pushing it along and laughing at the sound it makes when it bumps into things. SO cute. Also, you'll se a little of those leg movements I was talking about.

Tuesday, February 3, 2009

My New Toy

The days have been really pretty here and the Hub and I have really wanted to do something outside as a family. I'm not what you'd call an exercise queen, though. Actually, I'm a big wimp. I thought of something that I'd like to do, though: bicycle. I don't want anything that involves hunching over or wearing tight shorts, but biking itself seems kind of fun. So. . . .

isn't she pretty???!!?? I love my new bike and I love biking down our local trail. We're going to put a seat on the back and then I'll be able to take Charlie along too!

Sunday, February 1, 2009

Second Verse Same as the First

Well, Charlie seems to have gotten the nasty, mouth sore virus again. He's miserable and only wants to be held. He's thrown up once. I can actually SEE one of the sores and it looks terrible. I'm going to call the pediatrician in the morning, but at this point I think we're just going to end up giving him fluids and alternating Tylenol and Motrin. I'm determined to stay out of the hospital for this round, so we'll see how things go.

With my business plans I continue to chug along slowly. I purchased a domain name for my company so it can have a web site one day. I did some sample runs of my thank-you cards and just hated them. I was not at all pleased with the job that the printer did, so my husband is going to start calling around this week and see if we can find something better.

We've been doing Feldenkrais for two weeks and on Friday Charlie reached for something with his right arm again. It wasn't a great reach, but he's definitely showing an awareness of his right side that he didn't have previously.

My final bit of news is that I've taken an unpaid decorating job. I LOVE interior design, but of course, don't have oodles of cash lying around to spend on stuff. My husband's friend is a contractor and needed someone to help him pick out finishes and fixtures for a job he's doing. Basically, he's got this wealthy client who wants to redo the kitchen, bathroom, and an adjoining closet in her guest house on the river. She wants to keep the cabinets, but change the pulls, appliances, counter tops, and back splash. She's doing the same thing in the bathroom. The closet is one of those ones with bi-fold doors and she wants to turn it into a party station. I didn't take the whole thing very seriously when the friend asked me if I'd help him out, but today I was over there taking pictures of the areas, so I guess he meant it. Crazy stuff.