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!