Tuesday, December 30, 2008
I have to say that it wasn't too bad as far as hospital visits go. I watched DVDs and sketched a little and it's hard to complain too much about that. My only complaint would be that I had to have people bring me food because I couldn't leave Charlie while he was there. It could definitely be worse. Mostly, we just hung out while he got fluids pumped into him.
Charlie caught something called herpangina. Basically, it's a virus that causes sores in the mouth and in his case it also caused some serious, exorcist-style vomiting. Apparently, it's a common childhood illness and doesn't appear to be related to his other issues. He's doing fine now after charming all the nurses and getting tons of attention. He still has the sores in his mouth, but they are healing and don't seem to be bothering him very much. I'm eager to get to work on some art projects and thrilled to be home. I've even come up with some ideas for blog posts!
Sunday, December 28, 2008
It's not his shunt or an infection, so we're operating on the assumption that it's a virus. He threw up a ton yesterday, but seems better today. He won't eat or drink, though, so he's getting IV fluids. I HOPE we'll be home by tomorrow, but I'm not really sure. I'll update when we get home.
Friday, December 26, 2008
Christmas was good. My favorite part was Charlie crawling around on the floor trying to get to different things that interested him. I realize that it's about a year behind schedule, but I love it when he does regular kid stuff.
The hubby and I have been visiting our brains out, and honestly, I'm tired of visiting. Scratch that--I love visiting, but I miss my house and my regular schedule.
I have plenty of news, but the longer you wait to post the harder it is to come up with something coherent.
Saturday, December 20, 2008
I've found another show to enter. Take two?!?
Also, here's a picture of Charlie exploring the Christmas tree while using his Rifton gait trainer.
Wednesday, December 17, 2008
Today we visited the cardiologist and we were officially dismissed from Cardiology. We NEVER have to go back. Now, we only have four doctors. One medicine and four doctors. It's getting crazy-manageable over here.
Tuesday, December 16, 2008
Charlie isn't any tighter anywhere and hasn't lost any range of motion in the last six months. This is a good thing because he is having a bit of a growth spurt and I was worried that he was tightening up in the hamstrings.
The doctor said that I was fine with cutting out milk and urged me to try soy milk. He said that if he's allergic to soy milk then he'll probably throw that up too and we'll know. He said we could do allergy testing if we wanted, but he didn't recommend it since we seemed to know the source of Charlie's issues.
I told him about ABR and he was fine with it. He actually said that anyone who does what he does needs to be comfortable with alternative therapies. So many parents of special needs kids pursue alternatives. He also said that any doctor who puts up roadblocks isn't a very good doctor. All in all, that's as good a response as I could hope for.
He said to keep doing what we're doing and to come back in six months for hip x-rays. He also said that things would "ramp up" when Charlie turned three. I don't know what the heck that means--any more therapy and I think we'll both go nuts.
So, the two big appointments went well, and the appointment tomorrow with cardiology should be uneventful. I have to admit that I always feel deflated after these things. Charlie is doing SO well, and he looks especially great if you think about all he's been through. Few people survive the kind of brain damage he's had, and fewer still thrive. Even so, I wonder and worry and these visits only exacerbates these emotions. I am so excited about what he CAN do, but I realize that he is still behind. Is it OK to be a little blue even though things are really, really good?
Monday, December 15, 2008
Basically, the neurologist was very impressed with all the things that Charlie is doing. She couldn't believe he's commando crawling or doing any of the other things he does like holding toys and pulling himself up in the stroller. She expressed her belief that some of his vision issues are cortical and I couldn't disagree. If this is the case, then he still has more time for vision improvement. Personally, I'm reserving judgement for a later date. . . we'll see what his vision becomes. She also really like the way he was bearing weight through his legs.
I told her hesitantly about ABR and she wasn't worried about it in the least. She said that people who have big problems with alternative therapy usually don't have kids of their own.
We discussed whether or not we want to have another EEG done to look for seizure activity. I decided against it. I think one EEG a year is enough, so we'll another one done in six months. His last one was "improved," and right now that's enough for me.
She decided to switch Charlie over to the pill form of Phenobarb. We're supposed to crush the pill and then mix it into his dinner. The good thing about the pill is that you only have to give it once a day. So now we're down to one medicine, once a day. Unbelievable.
So, a good visit!
Friday, December 12, 2008
- Can figure out how a variety of toys work--levers, sliders, switches, and buttons.
- Uses individual fingers to operate buttons.
- Commando crawls--can do it across a room.
- Claps on command.
- Shows awareness of routines such as asking for food in restaurants, reaching for light switches, "helping" with getting dressed, lifting hand in high chair, and doing appropriate motions during songs.
- Can take off socks and bib.
- Knows where things are if they have been covered up.
- Makes "g" sound.
- Prop sits with one hand off the ground--occasionally lifts both hands.
- Rolls onto his stomach.
- Rides in a grocery cart without safety strap.
- Grabs the spoon while being fed and places it in mouth.
- Reaches for things of interest outside of immediate grasp.
- Can identify nose and mouth.
- Chooses activities using choice cards.
- Has begun initiating steps in Rifton Gait Trainer.
- Spit-up has gone down 90% (or more). We went down 90% with ABR and were able to ditch Prevacid. He doesn't spit up at all if we eliminate cow's milk.
- Makes longer and more varied sounds.
When I write this list it's clear that while Charlie is continually making progress, he's seen some real big jumps in gross motor since we started ABR. I just cannot say enough good things about therapy. If you're on the fence and can't decide, then I say, "get thyself to Canada!" If you regret it then I'll be completely shocked. I felt like a complete lunatic heading off to a foreign country to pursue "alternative" therapy, but it has been completely worth it. Plus, the exchange rate is pretty favorable right now, so no time like the present to put down a deposit. I'll be frank about finances and say that we have received several generous gifts from our family that has made this whole journey possible so far. We have no idea about the future. I do know that if it has to come from savings then it will. If I have to put it on a credit card and pay a ridiculous percentage then that's OK too. I can't put a price on hope and that is what ABR has given us--hope that our child will have more and will be able to do more.
Thursday, December 11, 2008
These photos also include the first ever shots of Charlie with both hands off the ground. Hooray for progress!
Tuesday, December 9, 2008
I've been having some medical issues. Nothing serious, but the symptoms concerned me, so off to the doctor I went. After the single most embarassing exam ever, it was determined that I need to have a colonoscopy in the New Year.
Can you say woo hoo?
Charlie is getting so strong these days that his OT exclaimed in the middle of therapy on Monday, "I think I need to go to Canada!" Everyone has been really impressed with the gains Charlie has made. We're going to see the neurologist and the physiatrist next week, so the timing is good. He made a lot of good progress since the last time he saw them around his first birthday. I'd say it's pretty impressive--not hard to be impressed by your own kid, though. I will say, however, that I couldn't be happier with ABR and would recommend it to anyone who was interested.
He pretty much never wants to be in a chair. He wants to roll on the floor or prop sit in front of his Leap Frog table. He's eating an amazing amount of food--the other day it was two bowls of oatmeal and an egg and a half. He also likes seafood gumbo, any kind of beef or chicken, and cucumbers with vinegar. If you're holding him, you better hold on tight because he's wiggling all over the place. I've really enjoyed this spurt in growth and development and maintain high hopes that he'll continue to improve.
Thursday, December 4, 2008
As I mentioned yesterday, the only thing on the agenda for today was a trip to drop off my application for the art show. I stayed up late trying to get in some therapy hours, Charlie got up early and we hung out for a while and then he took a nap. I took one with him. We were ready to go at about eleven and I thought I'd hit McDonald's since there wasn't a thing in the house and both Charlie and I will eat Chicken Nuggets.
I'm sure I've mentioned that I live in a small town. Well, today they had an inspection sticker check-point set up and they were ticketing anyone who didn't have an inspection sticker.
When I moved down here from Arkansas, I was a little overwhelmed with the brain injured baby, the hydrocephalus diagnosis, the subsequent brain surgery, the epilepsy, and the subsequent house arrest ( because of the medicine we were taking). Somehow, I forgot to register my car in Louisiana OR get a Louisiana driver's license. I'm sure there are normal people out there that take care of things like this, but truly and honestly I hadn't thought about it in awhile.
So when I pulled up to the check point I:
Had no inspection sticker.
Had an expired registration from another state.
Had an expired driver's license from another state.
Had an expired insurance card ( I have insurance--I just couldn't find the card).
I was completely honest with the officer: I told him that I knew the stuff was expired, I wasn't going to waste his time telling him some story, and that I was prepared to deal with whatever punishment I received. He actually let me go, but told me that he could have had my car impounded in addition to about a bazillion tickets. NOT COOL! I think he only let me go because I had the baby in the car and he didn't want me to have to walk home.
I figure I've got to take care of this, so I go back to my house, call my insurance company, gather up some paperwork, and head to the DMV. Actually, I called my mother who agreed to accompany me to the DMV because trying to do anything with a one-year-old who can barely sit much less stand, is a chore.
At the DMV they won't issue me a new license because my old one is expired and I don't have a copy of my birth certificate. They would let me register my vehicle, but I decided to wait til I'm doing the license so I can take care of everything all at once. So tomorrow I get to go back to the DMV from hell again. Yippee.
In other news, I did manage to get the application thing taken care of. It is a juried show and I have no idea if I'll get in as I know very little about the show and what kind of works they've shown previously. I figure, nothing ventured, nothing gained.
Wednesday, December 3, 2008
Tuesday, December 2, 2008
Monday, December 1, 2008
. . .for the wonderful comments and support I received on my last post.
. . . for Charlie's delighted giggle when he discovered dropping things on the ground.
. . . that I didn't cook a THING for Thanksgiving.
. . . that I found my iPod (whew!).
. . . that no matter what happens, and no matter how hard things seem, I always, always feel loved and supported.
I hope you all had a happy Thanksgiving.
Tuesday, November 25, 2008
My first plan is to expose Charlie to some new types of movement. I was thinking swimming. I did a bunch of searching and I can't find one place around my house that has an indoor pool. Scratch that, I can't find any clubs with an indoor pool. So, I'm thinking about sending a letter and a cute picture of Charlie to two local hotels and see if they would let us use their pool about two hours a week. Sound crazy? Probably, but it can't hurt to ask.
My second idea is even nuttier. I think I want to get an article published. I realize this sounds pretty grandiose, but hear me out. There are many, many mixed-media publications and I read a bunch of them. Pretty much every month I read an article that I think I could have written. I realize that here, on the blog, I pretty much post incoherent nonsense, but I did take fifteen English classes in college not including two I tested out of. I am capable of clear written thought. I think that I could write a decent, editorial-style article. So, now I'm in the process of figuring out how to write a query.
Anybody out there in blog land have any tips for either of these ideas. I'm feeling a little nutso, but I figure I've got very little to lose on either venture.
Saturday, November 22, 2008
As most good stories start these days, mine starts with, "so I was on Facebook." I was actually checking on my sorority alumni group when I noticed that a guy I had dated in high school had joined the group, "Moms of Kids With Developmental Delays." Well, that caught my attention for a number of reasons. First of all, he's no mom, and second of all, he doesn't have any kids. I suspected it was some kind of joke and not a cool one, so I decided to check it out. I was fully ready to be a complete bitch if this was some body's idea of funny.
Well, turns out his cousin started the group and he joined to show support. Her son has an as-of-yet-un-diagnosed condition that has caused developmental delay and hearing loss. They think it must be genetic since he's had a clear MRI and CT scan.
She and I chatted on Facebook this evening. Turns out she remembers me from when I dated her cousin (Lord help us all), and is hoping to move to my area soon. We've got the good public schools here. Actually, that's why I live where I do--the good public schools. So, I may have found a mom-friend who's in a similar situation.
How weird is that?
PS: I seem to remember that there was a family here on the net that had two children with genetic cerebral palsy. They also had one neuro-typical kid. Anybody know what blog I'm talking about? I'd love to share it with this girl since she's in the throws of genetic testing and I've really got no info to share on that one.
Friday, November 21, 2008
So, without further ado, here's what we've seen in the first forty hours.
- We've seen noticeable lengthening of his neck and better definition of his chin.
- Spitting up/reflux has gone down about 90% and we've been able to discontinue Prevacid (a savings of thirty bucks a month!).
- He uses two hands when drinking from his sippy cup.
- He make more sounds more often, and they are longer.
- I've noticed changes in the way he breaths--his breaths are deeper.
- His therapists think that he is using his eyes more.
- Crawls for longer distances.
- Actively tries sit up and often manages to get upright in the process. Of course, he then topples over, but it is progress.
And, for those of you that are active members of Team Charlie and need pictures, here are some of Charlie in his new walking contraption. So far, he mainly thinks it's nuts, but every once and a while he makes the stepping motion with his right foot, which his PT is very excited about.
Ummm, they won't let me add pics at this time. I'll upload as soon as blogger gives me a little luv.
Wednesday, November 19, 2008
In other stuff, I'm debating which picture I should enter in the up-coming multi-media show. Which do you like better? The blue or the orange? Please forgive the crappy pictures.
Monday, November 17, 2008
This weekend I had a bit of a revelation. I was visited by someone I've been friends with for about six years now. She's a professional who does a job that few women ever dare to. She's cool, and fun, and also a complete partner in crime if you need to do some shoe shopping.
She also just adored Charlie. She held him, talked to him, and even helped me when I wanted to do some walking practice. She didn't flinch when I asked her to carry Charlie's special seat into a restaurant because he can't do the standard high chair.
Last week, my college buddy the PhD was the same way.
Thing is, your true friends are your true friends and no amount of disabled child is going to get in the way of that. They cheer you on; they cheer you up. They are interested and insightful. They are the same fabulous women that they've always been. Babies or no, my friends are the cream of the crop and I've been delighted to re-discover this in recent days.
I'm pretty lucky.
Thursday, November 13, 2008
Today we started working with symbol cards for Charlie. We hold up two cards and he picks the one he wants. Each card represents a song and when he picks the card we sing the appropriate song.
This is big. It shows that he understands that the cards STAND for something and he can choose. The cards are symbols so that's big too.
Then, this evening, while I was waiting for him to fall asleep, I saw him rubbing his eye with he right hand. Charlie rarely uses his right hand and I've never seen him use it like that before.
Today, I feel like we're on the edge of possibility. It's a pretty cool place.
Wednesday, November 12, 2008
And did I mention that I'm turning thirty next week? Sigh.
So, forget the blogging every day thing.
Charlie and communication has been a complete blast. I can honestly say that it is one of the most fun things in my entire day. I made a series of symbol cards that represent different songs. He picks a card and then we sing that song. I love it so much and so does he.
ABR is also pretty great. Today, his instructor noticed that his neck looks different. It is a ton of work, but I feel like it is SO completely worth it.
In artsy news, I think I'm going to try to get into a mixed media art show. It's close to the house and the entry fee is twenty-five dollars. The due date for entries is December fifth. I have two canvases I've done that I really like and now I just have to decide if I've got the guts to enter. Only time will tell. . .
Monday, November 10, 2008
I got a letter in the mail today about a criminal proceeding. It called me and my husband "victims," and gave us victim ID's and all sorts of information about the perpetrators and how they plead and whatnot. They told me that I should feel free to contact their office if I wanted to discuss how the crime had affected me emotionally or financially.
Thing is, I didn't know that I WAS the victim of a crime.
I did some googling and found out that the gallery that sold my husband and I several paintings, was involved in fraud. Apparently, they bought cheap-o paintings from China and then passed them off as the work of local artists, which allowed them to jack up the price significantly. My understanding is that works of art from China are not considered "investments."
Luckily, my husband and I buy stuff we like. We would, of course, prefer to support local artists. We plan to do so in the future. Truth is, one of the four paintings we purchased is a "fraud." Thankfully, I like the way it looks in my house, no for us, it's fine.
Still. . . weird.
Sunday, November 9, 2008
Eight TV Shows I Watch:
I don't watch TV very much any more, but here's a list of some of the stuff I used to like.
- Law and Order SVU
- The Closer
- CSI Las Vegas
Eight Things that Happened to me Yesterday.
- Went tailgating for the LSU/Alabama game.
- Got stuck in some hellacious traffic.
- Visited with a bunch of my college buddies.
- Drank a really big daiquiri.
- Almost got myself kicked out of the Varsity.
- Ordered the last Twilight book off of Amazon.
- Watched The Perfect Score.
- Got some ABR done on Charlie, but not as much as I would have liked.
Eight Favorite Places to Eat:
- Serrano Salsa Company
- PF Chang's
- My parent's house
- De Angelos Pizzeria
- Casa Garcia (it's funny this one is last because we go there about once a week).
8 Things I am Looking Forward To:
- ABR in February
- Thanksgiving trip to Little Rock
- Spending time with the new software I bought.
- The next Twilight book.
- Seeing more changes in Charlie as he grows and as we progress with his therapy
- Bananas Foster cheesecake on my birthday
- Getting finished with my Christmas shopping.
Things on my Wish List:
- More sleep
- A new pair of boots
- Time to work on my business
- More chances for Charlie to practice walking.
- A wireless router
- A new scanner
- A new printer
I'm not gonna tag anyone else because it's a Sunday and I don't think very many people will be reading.
Saturday, November 8, 2008
Erin made an interesting comment, which got my wheels spinning. She said that I would have to teach new friends about Charlie. How true! I think that the really great friends will distinguish themselves.
Speaking of which, I had my great lunch yesterday with a college buddy and she asked some questions about ole Charlie. Since I don't have a whole lot to say, I'm gonna go over what she asked and also tell you my answers.
Does Charlie see better out of one eye or the other? How do you know if he's looking at you?
Charlie seems to use both eyes equally. People want to say he has a "good" eye, but truly we haven't seen that. He seems to have more problems with getting his eyes together and on target. This means that sometimes he sees something and you don't know it. He doesn't appear to be looking at something and then he lunges at it, or grabs it, and you figure he must have seen it. Other times, he looks right at you and you know it. It depends. I suspect that much of his vision issue is related to all the tiny muscles that control the eyes. The older he gets, the better he is at looking at what he wants.
Does cerebral palsy always involve intelligence?
This is a big no. Cerebral palsy effects movement. That's it. We, as a society, tend to assume that a person is dumb if they can't speak or write clearly. Honestly, this stuff is all muscle-related. I think we all know that plenty of thoughts and thinking occur without moving a muscle. So. . . while some children with cerebral palsy have lower IQ's, it doesn't mean that they have to.
And just a random, CP mommy fact that you may or may not know. Charlie doesn't have the strength to sit in a restaurant high chair. They've got no back, no sides, and basically zero support. For this reason, I bring Charlie's seat with me when we go out to eat. Interestingly enough, the restaurant people don't bat an eye. They are friendly and helpful. It takes two people to get Charlie and all his crap into a restaurant, but it CAN be done.
Friday, November 7, 2008
Today I had a lovely lunch with a college buddy of mine who's in town to watch Alabama play LSU. It's promising to be a fun weekend with lot of people coming into Baton Rouge to watch the game and Hubs and I are probably going to go to campus tomorrow just to visit everyone. We're not, however, going to the game.
Charlie has been doing really well. I'm seeing little structural changes from the ABR: His abdomen is less diamond shaped, and I'm starting to see a little length in his neck. I rarely make my three hours a day, but I get close and I'm excited about the process. I was VERY concerned about my own ability to work on him for hours at a time (I can be SO ADD), but it gets a little easier every day. Honestly, I cannot wait to go to the satellinte in February to learn some more exercises.
His thera-togs are making nice differences in the way he holds himself. When he tries to sit, his back is straighter and I think that's from all the good input he gets from them. He still needs to keep one hand down when he sits, but I'll take any progress I can get.
His speech teacher wants to try a communication board with him. Charlie will be the youngest person she's ever tried it on, but she wants to give it a shot. We're going to start with three things on the board and go from there. Have I mentioned today how smart my little buddy is?
That's it! This posting every day thing is tough!
Thursday, November 6, 2008
I have a lot of days where I wonder WHAT, exactly are my goals for Charlie. I mean, I can focus really well on the small stuff, but I have no idea what the big picture is. Do I want him to have his own place, do I want him to go to college? Do I want him to walk? To have a job? Sometimes I wonder if what I'm doing is the right thing when I'm not exactly sure where I'm headed.
I wonder if I'll ever have any mommy-friends. We have some really great friends who hang out with us and Charlie and it's fun, but I wonder if people who have regular children would be uncomfortable around Charlie.
And sometimes, late at night, I wonder this:
I wonder if I made the right decision for Charlie. In the very beginning, I wanted to support Charlie and his life because I thought that it meant I was supporting him. I wanted to take him home with me and love him. Now, as he gets older, and he faces so many challenges, I wonder if I was selfish.
Tuesday, November 4, 2008
I think that more than anything this lets us all know that this country is ready for some kind of change. I think McCain did a great job, but really, following Bush was a complete loss. I don't know how the rest of the country felt, but for me, Bush let me down. I became more disillusioned during his term than I thought was possible. I don't think I'm really a Liberal. I'm positive that I don't love all of Obama's policies. I'm also positive that this election galvanized the American public. They woke up and went to the polls and made history today. Really, my hope is that this is just the start of changes in our country. I hope that this lets us know that more is possible than we thought. Even if Obama wasn't your candidate, this is definitely history in the making and I think that counts for something.
The journey towards starting my own business is definitely an interesting one. One day I'm feeling on top of the world and the next day I've decided that I'm crazy and I need to just toss the whole thing down the drain. It's tough. I think the hardest part is that I've spent my whole life in jobs. Someone told me when to show up, what to, what to wear, and I wasn't pushing the whole thing along. With this, things are different.
Really, I guess, it's no different than life: some days you're up and some days you're down.
Monday, November 3, 2008
Later, for lunch I started boiling some noodles. Then, Charlie woke up and was hungry, so I fixed him a bowl of oatmeal. Then, Charlie's PT showed up. You know where this is going. . . Halfway through the session we start hearing a funny noise. It was my noodles sizzling in the pan! Yes, I managed to burn noodles.
I've decided that I shouldn't try to cook dinner--it could end in disaster. Instead, I'm going to make my husband take me out for enchiladas.
Sunday, November 2, 2008
Saturday, November 1, 2008
November will be less insane, but still busy. . .fall is always kind of hectic. I'm doing a little volunteer work (gasp!), and we'll be going to Little Rock to celebrate Thanksgiving with our Arkansas friends. And did I mention that I'll be turning thirty in less than three weeks? Seriously, I should be freaked out, but I keep forgetting about it.
All of this is in answer to a question Nadine asked me when I talked about my business. She wanted to know how I could wait til March. Truthfully, putting myself out there is hard. I don't want to put my name on something unless I really think it's an excellent product. Add that to the fact that I am really busy being a mom, therapist, cook, wife, friend, daughter, blogger, and Tiger fan and there are only so many hours in a day. I'm squeezing in painting and planning on the sidelines. March is my goal because that's when I can start applying for the next season of art fairs and Junior League boutique nights. I need to have packaging, plenty of product, business cards, and all that other jazz by then. So, even though it would be great to cash in on this year's X-mas madness, in reality, I will have to wait until 2009 to really get things off the ground. Stay tuned. . . pretty soon I'm planning on showing you guys some of the stuff I'm making.
In Charlie news, things are great. On Friday he had a substitute physical therapist who decided to let him practice walking. He held onto a bench and she moved his little legs back and forth. He went back and forth several times before he got tired, and held on all by himself. Also, his theratogs have finally arrived in the correct size and we tried those on as well. His sitting looks so good when he wears them and the sits up a lot straighter. As for ABR, I just tallied it up and we got in eight hours this week. I feel pretty good about that. We're just starting out, so some of the early sessions were just thirty minutes. I'm still struggling with a good way to do the jaw/larynx, but we'll work it out. I feel so good about this therapy that literally, my heart sings a little bit. It is the only thing I've done for Charlie that feel 100% beneficial. I'm so cheesy!
I realize that most of you didn't log on to read my ramble, but just wanted the good stuff. . . pictures of Charlie in his Halloween costume. I didn't take any, but I promise to post them as soon as I get some from my mom.
Happy fall, y'all!
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.