Wednesday, October 29, 2008
They admitted us almost as soon as we got there, and then we waited about five minutes longer than forever. Really, it was about three hours, but when you're spending your time with an under-fed, cranky toddler, it's a long time.
I had basically resigned myself to the worst of all possibilities--a potentially life-threatening syndrome that would require surgery ASAP.
I needn't have bothered.
Doctor came and said that he shows no signs of tachycardia and no signs of Wolff Parkinson White Syndrome. We are going to discontinue his heart medicine immediately. How cool is that? We'll check back in a month after he's completely medicine free, but the doctor was extremely optimistic.
I have other interesting news as well.
ABR is not a quick-fix. The more hours you build, the more changes you see. You really have to have faith in the beginning that you're heading somewhere.
I have seen some teeny, tiny changes, though. As soon as we started the chest compressions I noticed that Charlie started making more and longer noises. This is minor, but it IS a change. I can also see an almost imperceptible change in his rib cage. When we left for Montreal, it was really angular. The evaluator said that his collapse was "significant." Well, he looks slightly less pointy. Slightly. I thought I was just imagining it, but I asked my husband if he noticed anything different and he said the exact same thing. Of course, I've also been working on his neck and that looks exactly the same.
Tuesday, October 28, 2008
In other news, the much-talked-about business is now officially in it's infancy. I now have my very own Limited Liability Corporation. My brother says that I'm his first official client. I'm still so skittish about saying too much, but I will say that it involves selling my art and maybe using it in ways I didn't think of originally. I am excited, but also nervous because mostly I stick my art in the garage where no one can see it. I've picked out some equipment and now I'm trying to squeeze in chances to paint more. Can't sell what you don't have. A lot of my stuff is for children, but I'm also doing some stuff that adults would like. There's a bunch of other stuff in the works, but I hate to talk too much about it until things are closer to "up and running." Truthfully, I'm shooting for an official "opening" sometime in March, but we'll see how things go.
Monday, October 27, 2008
For this reason Charlie takes medication three times a day to keep his heart beating at a normal rate. We visit a pediatric arrhythmia specialist every four months.
Well, today the Charlie's doctor dropped the words, "Wolff Parkinson White Syndrome" on me. Word to the wise: do not Google syndromes that they mention at the doctor's office. I had a total freak-out this afternoon, but some further research has shown that this is a completely manageable situation. Actually, the doctor isn't even sure Charlie has it--he just has some markers on his EEG that could mean WPW. So. . . Wednesday we head back to the hospital to check out the ole ticker and see if it mis-fires in a controlled situation.
Some days I'm a tired. Tired of doctors and tests and procedures and tired of stuff whomping me out of no where. I'll be better tomorrow--just give me a second to vent here.
Sunday, October 26, 2008
Thursday, October 23, 2008
Did mention that Charlie's trainer called him smart today? And the office manager, Patricia? Yeah, that's my baby. They probably say that to all the moms, but I couldn't care less!
After our training we went to eat at Schwartz's, which supposedly has the best sandwiches in Montreal. You wait in a line outside just to get in. There's only about five things on the menu, but everyone says that you just get the sandwich. The sandwich consists of a smoked meat that reminds me of corned beef, two little slices of bread, and mustard. Everything else is a la carte: pickes, peppers, cole slaw, or fries. The sandwich was good, but a little too meaty for my tastes. The fries were excellent.
After that we headed out to the Montreal Botanical Gardens. They have a Chinese garden with an illumination display. It was pretty cool, but WAY to bumpy for a stroller. Then we went inside to see the pumpkin display, which was out of this world. It featured about a million pumpkins that had been decorated by people from ages 3-103. It was insane what a person can do with a pumpkin.
I wanted to add a couple of thoughts about my journey since tomorrow will be a big travel day and so will Saturday. I don't know if I'll get to a computer again before my brain empties.
I spent most of my life thinking that people with motor defecits were also deficient mentally. The deeper I get into the world of being a "special momma," the more I realize that not only is this not always the case, but I wouldn't even say that it's the norm. You absolutely have to work harder to keep these kids up to speed with their peers. They can't explore the kitchen cabinets, so you might have to get down on the floor with them and show them. The world is still their classroom--they just don't have as much access to it as a regular kid. I used to see people pushing their disabled childred around places like the zoo and I'd think, "How sweet. . .treating them just like a normal kid." You know what? I'm an asshole. There's no reason to think that they wouldn't like the zoo or the aquarium or any of the other things that typical kids like. I've worked with kids who are clinically retarded. THEY look just like everybody else. You can't spot low IQ points from across the room. Despite some fairly in-depth experience in this area, it took having Charlie to make this clear.
And finally, a word about the fashions in Montreal. The jeans are overwhelmingly skinny here. I know all the pear-shaped women of the world are lamenting this, so let me just tell you--the skinny jeans are here. Boots, in Montreal, are pulled over the jeans. Leggings are also abundant. There are less high-heeled boots and more of those flat ones. There are lots of slouchy boots. The women here love glasses with decoration on the sides. The colors are subdued and I've seen a bunch of those floppy, knitted, beret-style hats. I might have to get myself one of those.
See you on the flip side!
Wednesday, October 22, 2008
Today we practiced the neck technique on each other. If done incorrectly, it can be very uncomfortable for a child, so they make you perfect your technique before doing it on your baby. I feel about one hundred percent better about the neck technique than the chest one. I can see myself doing it and doing it effectively, which is a good thing. The problem with yesterday's exercise is that they want me to do it seated and I spend half my time trying to keep Charlie in the correct position. I think I may ask the head trainer about some other possible positions, since he's the one who thought we should do it seated.
We ate lunch at Subway and then did our driving tour of Old Montreal.
We hung out at the hotel awhile, stopped by a grocery store and then my dad and I went out to check out the Warhol exhibit. Talk about weird. Each room was set to a different kind of music including one room that seemed sort of like a basement in the seventies--complete with strobe lights, a cushy couch to lay back on, and psychedelic images floating across the walls. My favorite room was the disco one. One room featured "sculpture" that was rows of boxes and another had what looked like helium balloons shaped like pillows floating around. It was definitely super-arty.
I'd like to leave you with some pictures but the hotel's connection isn't allowing me to upload, so I'll have to do it when I get home!
Tuesday, October 21, 2008
After a bit, we started assessing Charlie for his first exercise. Charlie is small so he needs about a million less towels than when we were working on each other. Also, they decided that he would do best in my arms, so I think he'll really like that. It will be our little time together. My mom and I practiced on him some and then they videotaped us doing it correctly. That way, we have a DVD to take home.
In the waiting area I got some time to chat with Daniel and Fletcher's moms and that was fun. I like talking to people who are in a similar boat. We spent a little time talking about intellectual programs to do with the kids and I've realized that maybe I should spend a little more time on here talking about it because I've gotten a lot of comments from other people about it.
After training we went and ate at a Chinese restaurant that the administrative assistant at ABR recommended. We've been eating in downtown Montreal and the place is NOT cheap. Your average plate has been about twelve dollars. This little Chinese place was awesome. It was cold and rainy today and the first thing they brought out was hot won ton soup. Then we had spring rolls and then a plate of beef and peppers and rice that was the size of my head. It wasn't PF Chang's, but it was pretty good and you couldn't beat the price. We got all of that plus a pot of hot tea for twenty-five dollars.
Then, we basically had no time AND it was raining, so we went and hung out at the hotel for a bit, and then got back in the car and headed toward the center for our visit with Leonid, the creator of ABR.
Leonid was running LATE. We waited for probably two hours before he saw us, but we had been warned that this might happen, so we hung out, ate snacks, fed Charlie and talked to other people who were there for training or other evaluations. We trade stories and tips and it's real fun.
I realized at some point today that I can only equate the decision to ABR with joining a fraternity or sorority. Things may be unfamiliar and strange, but you really just need to throw yourself into it if you're going to get anything out of it. Just take a big swig of the Kool-aid and see where it takes you. I think the first year is a sort of "initiation." If you can gut that out, then you'll probably keep it up. I do hope that I can keep it up!!!
Leonid's evaluation was like the one yesterday, but in more detail. He examines every crease in your child's body--pointing out things that you would NEVER notice. He showed me where Charlie's Adam's apple is and let's just say that it's no wonder Charlie can't talk. If I were to sum everything up I would say that his spine is compressed and has little rotation. This, in turn, throws a lot of other things out of whack too. You know that song you sing as kids, "the hip bone's connected to the thigh bone?" Well, since all your bones are connected, when one is out of whack, it makes a lot of problems. I can look at Charlie and know that he doesn't look quite right, but Leonid and the others can tell you just what the problems are. Also, they can tell you how to fix them, which is something no one else has been able to do.
Before the end of the session, he said that we might see results in the next three months, but most probably we would see them in the next six. There are no guarantees. He listed some positives he saw as well: Charlie is very cooperative, Charlie is young, and he does have some "segmentation." He pointed to a crease on Charlie's body, which I can only describe as the top of his butt crack and said that he was the first child he'd seen all day that had that. Now I'm pretty sure everybody has a butt crack, so I'm not sure I understood that completely, but whatever, he saw some good stuff, and I like that.
It's been another long day, so I'm off to bed now.
Monday, October 20, 2008
Training was detailed, detailed, detailed. I know why we need five days to learn everything. I needed several tries just to get my towel folded correctly. They are real specific about angles, and weight shifting, and I know that I'm going to be getting a real workout in the beginning. The interesting part was when they began doing the technique on me. It was sooooooooo relaxing. It's nice to know that this is an almost pleasurable experience for whoever is getting it. Almost everything else I do with Charlie is tough. It's nice that this won't be tough for him (might be tough for me, though).
Today we just practiced getting the towels ready and placing them correctly on one another. Tomorrow we bring the kids in and we will begin tailoring the techniques for our individual child.
Evaluation went as well as can be expected. They strip your kid down to his diaper and then video tape him in many different positions and doing different movements. Some kids really can't handle it, but I just kept humming and he handled it pretty well. He liked being on his back, but did really liked being placed in the sitting position. Big surprise!
Charlie is a classic cerebral palsy kid. He's got all the signs: His neck is too short, his rib cage has a diamond shape, his pelvis is very thin, and his legs splay outward from his body like a frog. His arms move from the scapula rather than the ball of the shoulder, and his legs are very weak at the pelvis. So, the bad news is that its a lot to work on and Leonid will only get into it further tomorrow. The good news is that since he's pretty classic, they've got a lot of ways to help him. Also, the evaluator called him inquisitive and intelligent. Gotta love that (although maybe they say that about all the kids).
For myself, I think I'm really beginning to see how Charlie's body is holding him back. When I talk about how he plays and all the things he can do, I realize that he is fighting with everything that he's got. Now, I've gotta get my hiney in gear so he has more to work with. For some reason, I see so clearly that he is disabled and that they are things he wants to do and he can't. I'm not sure I truly realized that until now.
We tried to go see the Andy Warhol exhibit at the Montreal Museum of Fine Arts, but apparently they're closed on Mondays. We'll try again tomorrow. We also ate at a restaurant that had heard of ketchup and iced tea, so it must have just been a weird place yesterday.
I'm enjoying myself, but I'm also dog tired. More of the blow-by-blow tomorrow.
Sunday, October 19, 2008
Travel went surprisingly well. I didn't yell at my mother and Charlie handled air travel surprisingly well. It was a long, tiring day, but we landed in Vermont late last night and got up bright and early this morning for our drive to Montreal.
Driving to Montreal was quite easy although I say that with the perspective of someone who sat in the backseat trying to read Twilight while my parents navigated. Still, we got there and with time to spare.
In the parking lot we immediately met Daniel's parents, Melanie and Lonnie. I recognized Daniel from his picture and he is just as cute in person as he is on the 'net. He's got the best smile and he flashes it often. You know what's funny? I could have picked Daniel out of a lineup, but Melanie was a complete surprise. I know there are mom pics up now and then, but we really do just post mostly pictures of our kids. Melanie wears makeup and everything. I'd be sticking my mug up here all the time if I actually had makeup on. Most of the time, though, I'm covered with drool and paint. Not the most appetizing combination.
Anyway, we went on up and they called roll. I recognized some names from the blogosphere, but there were many other parents who are aren't attached to their computers at the hip. I wonder how the heck they find out about ABR? I think that on some level we were probably all checking out each other's children: hoping that ours doesn't look any worse off or something. Or maybe that's just me.
The presentation lasted a good three hours. Some of it was review. The central focus seemed to be this: please do not think that your child is going to be walking and talking in six months. They used the phrase, "this is not a miracle" about 100 times. They showed us in distinct detail how our children's bodies have been affected by their brain injury. Tomorrow we begin training and in the late afternoon we will be getting evaluated by Gavin Broomes who is permanently in the North American office. The next day we have more training and in the evening we get evaluated by Leonid Blyum, the creator of ABR. Supposedly, an evaluation with him is out of this world--there is just so much that he can see after working with brain injured kids for so long. I can't wait for that!
On the way to our Montreal hotel we stopped and ate dinner at a restaurant called, "Madison's, New York restaurant and bar." We ate some expensive hamburgers and our waitress laughed at us pretty much the whole time. A request for iced tea made her laugh and it took her quite a while to procure some. Do people not drink that other places? She also brought us ketchup in tiny, unopened bottles. Is ketchup not a regular condiment for Canadians? It's pretty funny that a place that called it self a New York restaurant had trouble getting us ketchup and iced tea.
So that's it. We're all tired, but good, and now I'm going to go give Charlie something to eat.
Thursday, October 16, 2008
But that's not really what I wanted to talk about.
We're pretty much down to the wire with regards to this election and people are getting down to the knitty-gritty of the pro-life/pro-choice debate. McCain pissed some people off in the last debate with his air quotes and the reverberations are definitely being felt in the blogosphere. I don't want to talk about fetuses today, though.
People from all walks of life come forward to support "the sanctity of human life." I, pretty much a terrible Christian on a day-to-day basis, feel that human life is of the utmost importance. I myself, was faced with the difficult decision of whether or not to keep my day-old son on life support despite significant brain damage. There were some truly amazing parents sharing space with us who were unequivocal in their belief that a child with brain damage should be taken off of life support. I revered these church-going, God-loving people. I have no doubt that they have attended a hundreds more church services than I have. On this one point, they had their opinions and I had mine.
What I'm trying (badly) to say is that I feel like the whole "sanctity of human life" thing is pretty subjective. A lot of people think that if they vote or even post a message on their blog or Facebook account then they are upholding the value of human life. Meanwhile, I feel that the disabled are routinely ignored and marginalized. The lives that are actually going on right now are ignored.
Have you ever looked to see the children who are waiting to be adopted in your state? In my state, most are black and many are disabled. My heart breaks as I look at their beautiful faces and wish that they had homes. Where is the respect for their lives? How have they gotten to the point that their pictures are up on the Internet like puppies that need a home? Where are all of these people who say they are in support in human life?
But, I'm not just here to bitch (shocking). I also want to congratulate. While living in Arkansas, my husband and I had the rare opportunity to be part of one of the most wonderful Church congregations (families) a person could ever be involved with. Their support during Charlie's hospitalization was a thing of beauty like no other. I can honestly say that it changed the way my husband looked at Christians, which is no small feat. It goes further than what was done for us, though. I still talk about the loving and embracing way that this congregation accepted the disabled. It wasn't about special rooms and special classes--it was just about acceptance. Many of the regulars had first-hand experience with children with feeding tubes since they'd worked in church daycare. A good friend of mine with completely healthy children talked all about feeding tubes when they suggested one for Charlie. Almost everyone knew the little triplet with cerebral palsy. A young man with Down's sydrome assisted with early service. When we visited almost a year ago, Charlie's head was freshly shaved and scarred from his shunt surgery. People didn't stare--they came over, asked questions about the surgery, and talked to us. In the course of conversation tody I found myself telling Charlie's therapist about it and I realized that I had been in the presence of something very rare. I was in the presence of people who acted rather than spoke; who put their belief in action--and that is a rare thing indeed.
The point I am in-eloquently trying to make, is that how you value human life is seen much more readily in your day-to-day actions. Posting or talking or even marching for "life" is meaningless if you don't do something about it. There's a lot of humanity out there being ignored. There are abused children who need advocates; there are homeless people sleeping on the streets; there are children in need of basic health care (in this country); there are elderly people wasting away in nursing homes; many public schools are inadequately staffed. If you think that human life is important, then I think these things are also important.
I recently heard about a secret plan to build a center for the mentally handicapped somewhere in the New Orleans area. It's very important that this place not advertise or let anyone know about it until after ground has broken. The reason is simple: people don't want the mentally handicapped near them. I can name another case where a housing development for the elderly was axed when it was learned that ten percent of the residents would be low-income. I live in a VERY Catholic state. Here, it is no big deal to drive past pro-life signs mixed in with ads for car dealerships and fried chicken. Isn't it a shame that the value of life doesn't extend to the disabled? To the poor? What are we going to do about that?
I'm aware that this probably made no sense. For that, I apologize. I just needed to get some stuff off my chest.
Tuesday, October 14, 2008
That coat in the upper left-hand corner? Forty-five dollars. I'm not exaggerating when I say he'll probably never wear it again. I did get some sales, but he's growing, so he really didn't have ANYTHING. This is his winter wardrobe. Christmas outfit? Thanksgiving? Nope. This is it, folks.
Still. . . we're leaving in five days! Can't wait.
Sunday, October 12, 2008
Also, we're supposed leave in six days for Montreal.
His temperature has hovered around one-hundred degrees, so I'm not that worried, but I NEED him to get better. I will be completely devastated if we can't go to Montreal on Saturday. The next time they take new clients will be in six months. I will hate having to wait six months.
Please send prayers and good vibes our way.
Friday, October 10, 2008
Thursday, October 9, 2008
Honestly, I am SO glad that we are doing this now. Just looking at Charlie, I'm starting to see how his brain injury is keeping his body from developing properly. He's strong as in ox in some places and other places are so weak. He has a desire to do so much and I can only hope that this will help him with those goals.
I hate to fly and that will be interesting, but both of my parents are going. That will be fun. Also, there will be time every day to see the sights and I'm sure my dad (aka the tour guide) will be scheduling our every second. My hatred of flying has really cut back on the amount of traveling I do, so this will be a great opportunity.
There are many Internet families going to ABR this session. Melanie has composed a list here, and I've had fun getting glimpses of all the people we will be meeting. Kids just like Charlie! A bunch of them! That will be really cool.
In other, non-Charlie, news, I'm on the brink of sharing all of my business plottings. My SIL came and we talked, did research, and she had a lot of great ideas to help me. I would talk about it NOW, but I have some legal mumbo jumbo to sort out and I need to get that done first.
And, in the money/Charlie arena, let me say that children with disabilities are not cheap. While I do NOT begrudge Charlie one cent that I have to spend on him, now is pretty much a terrible time to take money out of the market. I'm not worried about the long-term health of the stock market, but do worry about the money I will need in 2009 to pay for ABR. With that in mind, I have two ideas for fundraisers. My husband absolutely refuses to ask people to donate money and I agree with that--there are people who need it more than we do. I'm not, however, above having garage sales or doing other things like that to raise funds. So, 2009 will be busy! Life just keeps trucking on, doesn't it?
Wednesday, October 8, 2008
Charlie's been rocking out and I've got news/videos/pictures to share. How about it I say that for every vote I get, I'll post a something!
Monday, October 6, 2008
I feel like I need to address something that isn't being adequately addressed by people--maybe I don't read the right blogs, but I think that it's important to weigh in on this particular issue.
There's been a trend in recent years where those people who hold their religion in high regard seem to feel that they must vote Republican. Somehow, the Republicans have cast themselves in the role of the party of the Christians. Sure, the Democrats go to church and all, but the Republicans are the party of the Evangelicals, the born-agains, the Fundamentalists, and the Charismatics.
I'm not trying to tell anyone how to vote. I just want to say that religion and politics don't mix. Please don't think that where you go to church should determine how you vote. You can vote however you like and I'd like to tell you why.
First, let me address what i think are the biggest reasons many Christians feel it is imperative that they vote Republican: gay marriage and abortion. Those are some pretty big issues. How could a Christian in good conscious vote for a candidate who doesn't oppose both? Here's what I think: George Bush was the Christian man's candidate. He opposes abortion and gay marriage. As we are wrapping up George's reign, both of these things are still legal. Despite Christians going out and voting specifically on these issues, they still remain sanctioned by our government. Voting is not going to change things. If you feel passionately about these issues than I recommend giving your time to the cause through prayer. I've seen prayer do far more than politicians in my limited amount of time on this planet.
People argue that abortion is murder and I can't really disagree. The war in Iraq is also murder. Innocent Iraqis are dying by the truckload and so are American soldiers. Sources estimate that around four thousand people have already died in the war. Please don't think that I am trying to disrespect American soldiers. I have nothing but respect for the people who put their lives on the line for our way of life. I have two friends in Iraq currently and my husband served five years in the United States Air Force. They are defending their own lives and the lives of their comrades. Unfortunately, however, there's a reason why they are flown over to another country and forced to do that.
Maybe this isn't enough of an argument. I'd also like to point out that one of the biggest insults hurled at the Democratic party is the phrase, "bleeding heart liberal." What exactly is a bleeding heart? A bleeding heart, by definition, is "someone who is excessively sympathetic toward those who claim to be exploited or underprivileged." You know who else could be described as a bleeding heart? Jesus. That bleeding heart business means giving money to the poor and the underprivileged. The Republican party has been dedicated to giving our money back to us, but also to Halliburton, text book companies, and now the financial industry all while denying things like basic health care to underprivileged children.
I'm not saying that you should vote for Obama. Truthfully, I'm not in love with either of the big parties these days. I just want to point out that loving Jesus doesn't mean that HAVE to vote Republican. It doesn't make you a bad Christian. I think it's time we separated our politics and our faith--our faith deserves better than that.
I wrote this and took a nap, and when I woke up I realized I needed to add something. I don't want it to seem like I think the Democratic party is the answer. In 2004 they were also in favor of the war in Iraq. Rather I want to say that the issue isn't black and white and is more complex than that.
Thursday, October 2, 2008
Charlie met his new speech therapist today. The woman is HIGH energy. She's probably in her forties and has a son with autism who lives in a residential treatment facility. I'm not gonna lie, she may be my new hero. She's upbeat and asks tons of questions and just put me in a good mood. She's clearly good at her job and picked up on some things that no one else has even mentioned.
Charlie was a complete show-off. He didn't feel like commando crawling, but he did show his mad skillz with his tool box. He revealed a hidden toy, played peek-a-boo, and clapped at all the right places during "If You're Happy and You Know It." To be fair, only one hand opens when he claps, but that's fine by me. He made choices, signed "more," and showed that he knew how to work a variety of toys. It was a good day.
The therapist would like to work on increasing tongue movement and also on strenghthening his lower lip. She also gave us two new signs to work on. She seemed to feel that he was able enough to do more signs, so we should work on that first. Our new signs are "give me" and "eat." I think this is going to be a good match for Charlie.
In other news, Charlie will (hopefully) get his first go at practicing walking tomorrow. The PT had said that we could try the clinic's walkable, so I'm hoping that we will. We have also ordered Charlie a pair of squeaky shoes in the hopes that this will encourage his to make the stepping motion. I ordered this pair since it's warm here most of the year.
There's more, but that's the most pressing stuff. Have a good weekend.