Utterly and Completely Disgusting

My dinner table this morning--note card ideas, works in progress, and the oh-so important diet coke.

Sometime Friday night one of our resident geniuses must have purposely swerved in order to kill an armadillo. I don't know why they did it because they left the dead armadillo in our driveway. They also destroyed our mailbox and the neighbor's mailbox and left their side-view mirror in our front yard.

Which leaves us with the distasteful job of disposing of said armadillo.

Neither my husband or I have any experience in this area, so my husband scooped it up into several heavy-duty trash bags and put it in our outside garbage can. This morning, however, we realized that it had begun to smell and trash isn't picked up until Friday.

I suggested taking it over to one of the local restaurants and throwing it away in their trash, but my husband was worried that a man clandestinely throwing something in a dumpster would draw suspicion.

My husband considered burying it in the backyard, but that seems like a lot of work for an animal that wasn't a family pet.

So we called upon my husband's super-country cousins. My family wouldn't have been worthless on this one--they don't change their own oil or wash their own toilets--I assume their roadkill experience is limited. My husband, on the other hand, has relatives who would have turned the armadillo into dinner.

The cousins were the right choice and they shared their full-proof method for getting rid of the stink:

1. Rub Vick's Vapor Rub under your nose.



2. Put a lemon wedge in your mouth.



3. Open up the garbage bag of death and squeeze MANY limes over the deceased.

That about sums it up. Hubs asked if I wanted to help, but I declined because, well, that's disgusting.

Fun Fact Friday

Awhile back, semi-desperate housewife posted about her "F-it List" (rhymes with Bucket List). Basically, it's a list of the things you have no interest in doing before you die. For Fun Fact Friday I'm listing some of mine:

1. Run a marathon. I don't want to do this and I don't understand why other people want to either. I ran track in high school and I don't think I ever got that rush that people are always talking about. I've tried running and I DON'T GET IT. You're tired, you're sweaty, and that's it!
2. Have a lovely garden. I've tried gardening and I don't like it--the bugs, the worms, the dirt under my fingernails. Ugh!
3. Do any type of drug. Drugs have always seemed completely un-glamorous to me and I find any type of paraphernalia just tacky. Bongs and baggies? No thank-you!
4. Sky dive. Airplanes scare me enough, thankyouverymuch!
5. Fly an airplane. See above.

So. . . that's it. Enjoy your weekend!

Boo-Yah!

This piece is part of series I did awhile back called "Louisiana Phoenix." It pretty much sums up how I'm feeling today--like I could conquer anything if I wanted.

Well, today we finished up the doctor's appointments for this week with a trip to the opthamologist. It was a super-fabulous appointment.


The doctor seemed almost flabbergasted at how well Charlie was doing. At five months, Charlie had a fairly obvious field defect--he couldn't see things on his right side. Now, the doctor was unable to detect field loss with toys or moving objects. This doesn't mean that Charlie can see perfectly on that side, but he can definitely see some.

When he first saw Charlie, Charlie also had what is called exotropia--the common term for it is wall-eye. Now, when Charlie focuses, this goes away. The doctor was thrilled by this. He said that this is a good sign and that Charlie may continue to improve.

He spent a long time going over the chart and seemed just thrilled by Charlie's progress. After looking everything over he said that in his opinion, Charlie had so many other things going on in his early life that he just couldn't focus on developing normal vision. He thinks that Charlie is developing his vision--just at a slower pace than everyone else.


He also said, "whatever you're doing--keep doing it."


So, you know, boo-yah! Charlie is kicking arse and taking names.

In No Particular Order

I'm starting to wonder exactly when I'm going to get back ownership of my brain--it doesn't appear to me any time soon. It started with deciding to enter the art expo and while that event has passed, the craziness has not.

We were in Plano last weekend and this weekend we had house guests. We had two appointments at the hospital today, we visit the eye doctor tomorrow, and next week we're off to see the physiatrist.

We had a sleep-deprived EEG this morning. I swear, no matter how little sleep he gets, putting Charlie in that environment always makes him hyper. They give me dirty looks every time and meanwhile I want to lie down and take a nap because I'm sleep-deprived too. These things always feel full of anticipation, but the reality is that Charlie has abnormal brain waves, and unless he starts seizing again, we'll probably maintain the status quo. Doesn't mean I won't worry until I get the report from the epileptologist, though.

After that we headed downstairs to have Charlie's hearing checked and his ear tubes examined. He actually responded to some of the sounds this time. He does appear to have SLIGHT hearing loss (he can hear down to 25 decibels and normal is down to 20), but no one is worried about his hearing at all--least of all me.

Tomorrow we go see the eye doctor, which might be interesting, but could also just be a big waste of time. Our neurologist is pushing for an assessment for eye surgery, but I am completely unconvinced that this would be an appropriate tack to take. I mean, his eyes have changed dramatically in the last six months and I would hate to start messing with them while they're still changing.

I'm also a little worried that next week people are going to start talking Botox for Charlie. Charlie's hamstrings have been tight from day one and while they don't appear to have changed much, his PT is worried that they are impeding his ability to stand and shift weight properly, so she's going to go with us to our physiatry appointment next week. I think a bigger culprit is the fact that we are currently without a stander OR a gait trainer, but nobody asks me what I think. I'm not sure how I feel about Botox--I mean, it's not permanent, but it is painful. It would give him a chance to use new muscles, but I just don't know. I'm undecided. Now, if they wanted to Botox the thumb on his right hand I might be interested in that. Hamstrings, I just don't know.

Well, that's what we've been up to--I let you know if I ever find out what I did with my brain.

Those to Whom Much has Been Given. . .

Recently, the Hub, Charlie and I went to Special Needs day at a local church. We meandered around for awhile and as we were leaving, me eye was immediately drawn to a beautiful little girl who was "dancing" to the music. Later that night I found myself standing next to her family in the check out line at Walmart. I spoke briefly with her parents and I was introduced to Mary Payton. Her mother explained that she had been completely normal until she was three years old and at that time she had developed a degenerative brain disorder. I went home sad because degenerative and brain aren't two words you ever want to hear in the same sentence.

Through twist of fate, I happen to learn that Mary Payton's family has a website and when I visited it I found out some thing that I haven't been able to shake. Apparently, Mary Payton's condition is fatal. Right now, this beautiful little girl shouldn't live past her twelfth birthday and before her death she'll experience a breakdown of her central nervous system.

That's not even the worst part.

A doctor at Cornell University has developed a protocol that has been proven to halt and in some cases even reverse the progression of this disease. Unfortunately, funds are scarce and she isn't able to go on with her research. Mary Payton and four other children are desperately trying to raise money so that the study can continue. As you can imagine, the price tag for something like this is huge--two and a half million in total for five children and at least five-hundred thousand of it needs to be raised quickly and soon.

I often think that it's hard raising a special needs kid. There are plenty of therapies that I'd like to try, but don't have the money. I'm also shelling out the equivalent of college tuition trying the experimental therapies that I can afford.

But if I never did any of these therapies, Charlie would still live. His life is not at stake.

There's a line on Mary Payton's web site that's just stuck in my head: "I will probably never have the kind of money I need now to save my child. "

I don't know the ends I would go to to save my child's life. I'm not sure I'm completely comfortable with the idea that someone's life has a price tag on it. What I do know is that I'm giving them some money. I've got a disabled kid at home and I just started my own business, but this is more important.

We can all do something to help this child. You can donate, but there are other things too--spread the word. I would love to see Mary Payton's name lighting up Twitter and Facebook. I've never been a big-name blogger and I've always been fine with that, but this is one of those times when I wish I had a little more reach. Still. . . things can be done. Tweet it. Put it in your status updates on Facebook. Send an e-mail to people you know.

www.marypaytonsmiracle.com

Let's see if we can't help.

Winner Time!

Well, everyone had lovely summer thoughts and I even laughed at the person who admitted hating it. I went ahead and used the random number generator to pick three numbers.

The first place winner is. . .

Melanie!

Melanie will win a custom-made alphabet canvas. Something like this, but custom-made to her specifications.

The second place winner. . .

Melio!

Melio will be winning the print of her choice from my shop. I've added a few more this week, so there's plenty to choose from--kid stuff and not kid stuff.

The third-place winner was. . .

Barbara!

Barbara is winning the surprise gift, which is a set of ten note cards. These note cards are based on some of the paintings in my shadow series and are printed on white cards with a linen texture. I'm really loving the way they turned out so I hope you like them, Barbara. I'll be listing them in my shop next week, so she'll be the first person to own some.

Thanks, everyone for playing--I had a great time reading all the responses now I have a l-o-n-g list of blogs to check out. If you'd like to become a fan of my shop click here and then you'll find out when I add new items to the store, have sales etc.

Fun Fact Friday

It's that time again. . . Fun Fact Friday, where I share a bunch of information that you could probably live without.

I've been to therapy and I've had pedicure--pedicures are, by far, more effective at lifting my mood.

I went to therapy after Charlie was born to make sure I was handling things OK--turns out, being ANGRY because your doctor was an idiot and being SAD because your child will be disabled are normal, healthy emotions. That was good to hear.

Right now my toes are the most delicious shade of 80's purple--I'm glad the 80's are back.

In the 80's I wore three-tier ruffle skirts like Debbie Gibson and went to a New Kids on the Block Concert.

I wasn't a huge NKOTB fan, but a popular girl at school invited me, so I had to go.

I wore black scrunchie boots to the concert which aren't that different from the ones I got for my birthday this year.

I own so many shoes that they don't all fit in my house. When I lived in Arkansas I had a beautifully organized system in the garage. In this new house, I have no such system and I am constantly rummaging around in boxes in the garage for the right pair.

I hope you all have a marvelous Memorial Day weekend. The Arkansas chapter of Charlie's fan club will be in town, so we're sure to be having fun.

It's the Little Things

If you've come to enter the give-away, then that's the post before this one.

Charlie will be turning two at the beginning of June and certain things are starting to dawn on me. For one thing, he's not a baby any more. He understands SO much more these days, and he's also getting quite big. For the first time I am realizing that he actually disabled. I look at him and he look like a perfectly normal little boy who happens to be lying down. The thing is, he can't get up. In so many ways he is normal--he has opinions about food, and music, and television. He likes to crawl around his room and play with toys. He loves it when his therapists come to "play" and gets aggravated when I linger too long while shopping.

So, yeah, he's disabled. I can't really deny it any more, and while that thought does make me sad. . . I am feeling so many other things too.

I am so grateful to have this little soul in my life. He IS work, and he IS disabled, but he is also joyful and mischievous and delightful.

We came so close to losing him two years and ago ( I realize that I STILL haven't really gone into all the details of Charlie's brain and how it all went down. I want to do that, but it is very, very hard to write about), but here he is--living, breathing, and thriving. I find myself trying to give him some kisses, but guess what? He's almost two and he's not real interested in Mommy's kisses!

Charlie discovering the joys of Baby Signing Time DVD's.

Get Free Stuff

So, I'm doing a giveaway to promote my new biz. Here's how it goes--in the comments tell me one thing you like about summer. On Friday I'll pull a name out of a hat or whatever and that person will win a custom-made original piece of alphabet artwork. I've done lots of these with a Louisiana theme for my web site, but you get to pick the letter, the colors, and even the little picture that goes with it--it will be a collaboration. Plus, you'll be getting an original piece of artwork, hand-painted by me, with professional grade canvas, paint, etc. If you don't have kids, don't worry, I can do a more adult version with your first or last initial if you win. My biggest customer so far has been a woman in her late twenties who bought some pieces for her office and then some more for someone else in her family.

After I pick the winner, I will also pick a runner-up. The runner-up will receive a limited-edition print from my store. You can see all the choices here.

I'm also going to pick a Wild Card winner and that person will receive a surprise item that has not yet even been listed in the store. Just for funsies.

The contest ends Friday at five p.m. I'll announce the winners shortly thereafter.

So. . . enter by telling me your favorite thing about summer. Check out the store and spread the word about the give away! There will be three winners total, so give it a shot!

More Randomness

We're back from Plano and I've gone through my usual stages of ABR--at first, I go to these things and I am simply OVERWHELMED by the whole thing. I mean, if I'm being honest with myself, I may use the words "special needs" and "disabled," but in my mind Charlie is just Charlie. The way he acts and behaves is the epitome of normal and I only see his differences in comparison to other children. To go to ABR is to confront disability head-on. There are older children there who are clearly disabled and there's all the equipment, and you can't deny that all the children involved are, in fact, special. It's like reality hitting you in the face a little.

So, I get a little discouraged.

But then, as I head home, I start thinking about all of the the things I will be working on with Charlie and I get EXCITED. I mean, I am hot-diggity-dog excited to be working on the underside of his jaw. You know that turkey neck part? Well, we're going to be working on making Charlie's less turkey-like. Supposedly this will help with speech and eating. How cool!?! Charlie seems to eat OK, but helping is good and he could definitely use some help in the speech department.

So, now I'm jazzed. I'm ready to get moving and start working on Charlie again. Woo hoo!

Satellite (Imagine Dave Matthews singing it)

So, we're in Plano.

I'm here with my MIL this time. I swear, every time I come to a training I've got someone new with me.

Today was tiring. We did two sessions, which means we had about six hours of training. That's hard on everyone. Plus, I got there early and stayed late, so we were all pretty beat by the end of the day.

We're getting four new exercises--today we learned the underside of the jaw and the temples. Very excited about this and hoping that Charlie will get some new sound out of all this jaw/face work.

We're also getting a machine. I stuck to my guns and said that it simply wasn't something we could afford, but my grandfather died, left my mom some money, and she decided that she wanted to spend it on the machine. It's a monthly rental that's roughly the equivalent of a car payment, so that's pretty steep for my family. I'm not sure if we'll keep it forever, but Charlie did fabulous with it and I have no doubt that he'll be able to sleep with it on. At the very least, it will be nice to have right now.

There are also a LOT of changes happening with ABR. Things are moving quickly and it's got my head spinning.

We no longer have to return to Montreal. Leonid feels that the trainers are now able enough to do evaluations and they will be writing documents for us with comparison photos and information. Leonid will only do evaluations if there are questions or if a case looks particularly complicated. Leonid will still be reviewing tapes and making recommendations for exercises--he just won't be poking at each kid's body once a year. Since we don't have to meet with Leonid, we don't have to go to Montreal. We can go to our satellites only. This will definitely make things easier and cheaper for us as far as travel goes.

Another change is that fact that ABR has received a research center designation from the Canadian government. This is means that they are now collecting data in a more comprehensive manner. I filled out a five page questionnaire about Charlie, pain, his ability to move, etc. I suspect there will be more of these in the future.

They are also expanding the use of the machine and trying it in new locations on the body. All in all, they seem to be working hard to make ABR easier for people to have access to and easier to implement.

Now, I'm going to shower and then go to bed. It's been a long day.

Neurology Update

It's doctor time again and today was neurology.

Today's visit was good, good, good.

Charlie passed a set of rings from his left hand to his right, which impressed her.

She said that his strength had improved under his arms and I credited ABR. Then I had to explain what ABR was to the two residents who were following her around.

She asked if Charlie understood what I was saying to him and I wasn't really sure how to respond to that--I mean, he knows stuff like "turn off the lights," and "cracker," but who knows about all the rambling I do during the course of the day? She asked me to give an example of his understanding, so I asked him if he wanted to play peek-a-boo. He promptly threw his rings to the side and began to play.

She checked his tone by thumping his reflex points with a little hammer. She didn't SAY this, but I noticed that she didn't really say anything about his arms, but pointed out the abnormal reflexes in his legs to the two residents. Makes me THINK that she couldn't really find anything in his arms. This is consistent with what his PT has been noticing--he tenses up the right arm, but there's no constant tightness there any more. I do think his thumb is still a little wonky, but he manages to get his hand open, so maybe there's hope for that too. Would it be annoying if I credited ABR for this improvement too?

She urged me to get him to the eye doctor immediately, which sounds like a bad thing, but really it's a good thing. Previously, there was a lot of talk about whether or not he could see and whether or not he had CVI, but now she seems to be leaning towards the idea that his issues are largely muscular--basically, he can see, but he has trouble getting his eyes where he wants. His vision is by no means perfect, but I think it's a lot better than I originally suspected.

We've scheduled an EEG for next week to make sure there haven't been any significant changes for the worse.

Good visit!

Tomorrow we'll be heading out for a quick trip to Plano to get some new ABR exercises.

New Post Up

I have a new post up at Blissfully Domestic. Even if you don't have a kid with CP, you might want to check it out for the super-cute Charlie picture at the top. Click here.

In case that doesn't provide you with enough Charlie-goodness--here are a few pictures of him in his Mother's Day outfit. I'm not sure if a sailor suit is better or worse than the knee socks my mom dressed my brother in when he was two (oh how I wish I had a picture to upload of that ensemble). He's got red spot on his forehead because of how he napped--he's got technicolor skin like his mama.

Mother's Day

I grew up with one grandmother that I knew very well. I've tried before to write about her, but I I'm not sure anything on paper could do her justice. She was just so alive and vibrant.

I had another grandmother, however, that I never met. She passed away when me mother was just seven and so she was always the question mark--the grandmother I never knew.

I found this picture of her going throgh some of my grandfather's things. This is actually from before they were married. She was stationed in California with the Navy and here she is in front of the state capitol building with a friend. I love how free and happy she looks. I love that she was adventuresome and went where life took her, which in this instance was California. I know it also took her to DC, which is where she met my grandfather.

I spent my Mother's Day alone, which is just how I wanted it. No one talking, no one asking me a question, and no demands on my time. I ran errands that are hard to do with a Charlie and painted and watched the Gilmore Girls. It was a most-excellent day. My husband took Charlie around to visit all three of his grandmothers and I am so glad that he has the opportunity to know them all and to be so very loved. The love of mothers and grandmothers can be so spectacular.

Happy Mother's Day to you all--your legacy matters, whether you realize it or not.

Fun Fact Friday

Well, I can't leave that last post up there all weekend--too depressing--so I'm going to do the Fun Fact Friday thing that I see on a few other blogs that I read. So, without further adieu. . .

I rarely wear makeup. When I dress up, but that's about it.

My elbows are double-jointed. This freaks people out when they see it. I don't see what the big deal is.

I have chronically low blood pressure. Sounds like a good thing, right? In the morning I'll run into doorways and sometimes I get those crazy black dots in my eyes. It can be a little unsettling.

Sometimes I buy shoes not because I think I could wear them, but because they are just SO beautiful--like works of art.

I had a strawberry birthmark on my nose for the first two years of my life. People continuously asked my mom if I'd had an accident.

If I was crazy-rich and money was no object I'd open a business in an old house, wear an apron, and help people buy things for their house. Also, I'd get a place at the beach--ya know, for vacations.

I married my husband because I thought he was absolutely the best match for me that there ever was. I hope everyone has that exact feeling about the people they marry. You can get through a lot of stuff with that feeling.


So. . . that's it!

Because Someone Should Get the Tylenol With Codeine

I'm going to go ahead and assume that all of the people who said that ear tube surgery is a breeze, weren't referring to adenoidectomies as well. Those are apparently a little less breezy.

The doc told me that she put the tubes in and that there was, in fact, fluid behind each ear drum, so it was probably a good decision. We weren't really sure if we were going to take out his adenoids--it was a game-time decision--but they were apparently "quite inflamed," so out they came as well.

The thing about having your adenoids out is that it interferes with on of you basic daily activities--swallowing. Taking away Charlie's right to swallow offends him greatly. When they brought be back into recovery he was screaming so hard that the only thought I had was, "well, I know that's not my kid." WRONG AGAIN! They assured me that it was just from the anesthesia. Thing is, the last time Charlie had anesthesia, he barely batted an eye, so I was fairly certain he was in some kind of pain. He's crying, which he never does, and that stirred some sort of primal mommy thing and I started crying as well. Suckfest.

After he cried for an hour straight they decided that he might be in pain gave him some Tylenol 3 in his IV and he promptly conked out. Then they sent us home.

There's been some more crying and I actually did some of it myself. I've just spread myself a little too thin and it caught up with me today. Charlie's tears reduce me to smithereens every time and wasn't dealing with it very well. I'm not good at asking for help when I need it and I try to do it all myself. Not always a perfect combination.

Now we're hanging out on the couch, Charlie seems to be feeling better, which is good because he won't take any more Tylenol 3--ya know why? Cause you have to SWALLOW it. Ironic, no?

PS: These pictures were taken for an article I'm writing for Blissfully Domestic, but they're the wrong orientation--I'll let you know when it's posted.

This Week's Freak Out Brought to You by Ear Tube Surgery

So, by the time you guys read this, Charlie will probably be in the process of getting ear tube surgery. I've barely had time to think about it, and now it's here. I think that's for the best. I do fine with these things unless I think about them too much and then I scare myself for no good reason.

It's funny, I was envisioning the art expo as some kind of finish line, but in reality, it's like someone just fired the gun at the starting blocks. Between tying up loose ends on the business stuff and tending Charlie's therapy needs, I've barely had time to blink. I had my first online order and I set up a Facebook page too! Still a million little details, but I'm starting to get the swing of it!

I've barely had time to notice that next week we are headed to Dallas for another ABR session. Seriously, I can't believe it's already been three months and CANNOT wait to hear what Leonid's evaluation will reveal. I see progress and I hope that he can too. I am sad because Erin won't be there this time, but Dallas is a fun place and I know people there, so I'm sure I'll keep myself occupied.

You know, I've been thinking about this kind of stuff a lot, and for my family ABR is a really good fit. Yes, it's a lot of work, and honestly, I can completely see why people don't want to do it, but for us it just makes sense. Sooooo. . . Dallas, here we come!

Recap

So the expo was yesterday and it was a really interesting experience. I learned a ton in the five hours or so that it took to put the thing on.

The main purpose of the evening was exposure and I got a ton of it yesterday. I had the first tent in the line and it was right by the "Patron's Party," which was essentially where the rich people hung out and drank wine. Can't think of a better place to have my tent than right next to a big group of people who support the arts and have lowered inhibitions!

I haven't talked a whole lot about my business on here for a bunch of reasons, but the number one reason is because I was scared that I wouldn't be able to pull it off. Today, however, I can say that I did pull it off and I feel a little more confident talking about things.

Currently, most of my business is based around selling my art. I mostly paint art for children with Louisiana themes. It's the kind of stuff that I wanted when I was pregnant with Charlie and nobody made it. All of my art is Louisiana-inspired although some it is less obviously so. I've also done some digital designs that I'm putting on stationary and soon I hope to have branched out and put it on onesies and maybe blankets in the near future. I'm also working on some designs for those seasonal flags that people put out in front of their houses.

I learned a lot yesterday and made a little money. I'd heard that some people who've worked this show in the past don't make any money at all, so I knew that was a possibility, but I sold some prints. I also figured out a few things. I learned that my storage and display system sucks. My screen kept falling down until I anchored it to my chairs which resulted in some hilarious, Three Stooges moments. I also learned a little bit about the kinds of things people are looking for and it's going to help me with marketing and whatnot.

So, I'm tired, but I feel good about things and I feel like I can only improve from here!

So, without further ado, the web address for my new business is www.redbeandream.com I'm still in the process of adding things to the store, but for the most part everything is up and running! Check it out (if you like).