2009

I found this over at She Likes Purple so I'm doing it too!

1. What did you do in 2009 that you'd never done before?

Well, I never sold my art before 2009 and never had my own business before, so there's that and that's actually pretty cool.

2. Did you keep your New Year's resolutions and will you make more for next year?

I don't think I made any resolutions last year. We were fresh off a hospital stay so I'm pretty sure I was just glad to be home. I've got some resolutions, I call them goals, for next year and I think its possible I'll complete them.

3. Did anyone close to you give birth?

No. Apparently everyone was waiting for 2010.

4. Did someone close to you die?

Yes. My grandfather died in January and while it was expected, it still sucked.

5. What countries did you visit?

None--unless you count Texas, which some people might.

6. What would you like to have in 2010 that you didn't have in 2009?

A much neater office, a smaller belly, and a lot more patience.

7. What dates from 2009 will be etched in your memory and why?

I've never been a date kind of girl. I've been known to forget my husband's birthday. I'm that bad.

8. What was your biggest achievement of this year?

Getting gutsy about my art work. Still have a long ways to go on that one, but Rome wasn't built in a day.

9. What was your biggest failure?

Not getting more gutsy about the art thing. Being a complete wench about my "schedule."

10. Did you suffer illness of injury?

Does a colonoscopy count? I'm thinking no, but that stuff they make you drink before the colonoscopy? Borderline assault. Also, I think my pride was a tad hurt when the girls at the pharmacy seemed to be smirking as they handed over the jug o' hell.

11. What was the best thing you bought?

My camera, although I still don't know how to use it. I'm picturing years of happy photos with that bad boy.

12. Who's behavior merited celebration?

The Saints. Totally. Spending way too much of my childhood watching them lose has made this season even sweeter. Plus, it's bringing attention to my favorite city for something other than Katrina because seriously, we are so much more than that.

13. Whose behavior made you appalled and depressed?

I've got nothing for this one. I generally try to see the good in people even when it's a little tough.

14. Where did most of your money go?

Doctors appointments and therapy bills. Really, I'm fine with that. I just think of Charlie as the luxury vehicle of kids. Most people have a Chevy--we've got a Lexus.

15. What did you get really, really excited about?

One of the best parts of this year has been meeting so many different amazing people from this little blog. Really. I live a small life in a small town and it blows me away the way this here Internet allows me to connect to so many different types of people.

16. What song will always remind you of 2009?

So hard to say, but I'm guessing "Party in the USA."

17. Compared to this time last year, are you skinnier or fatter? richer or poorer? happier or sadder?

According to the scale, my weight is unchanged, but my belly sure seems flabby these day. Perhaps some sit-ups are in order.

Definitely happier. Definitely.

Richer? I think so. Hubby's new job has helped get us back in the black.

18. What do you wish you'd done more of?

Gone to the library. I'm just discovering how much money I can save by going there. Fantabulous.

19. What do you wish you'd done less of?

Sat around waiting for my husband to come home. I love my husband, but he works a lot and I really had to come to terms with the fact that he's not coming home at 5:30. Once I realized that, I got a LOT happier.

20. How did you spend Christmas?

The same way we always do. Lunch with my parents and dinner with my husband father and step-mother. Not terribly exciting stuff.

21. Did you fall in love with 2009?

Nope. Not my favorite year. Seemed to me there was a lot of death and divorce, which aren't my favorites.

22. What was your favorite TV program?

Bones or the Gilmore Girls both of which I discovered via Netflix. I'm enjoying 24, but I'm only just starting season three, so we'll see how it works out.

23. What was the best book you read?

I'm enjoying the Gaslight Mystery series by Victoria Thompson. There's a little romance, a lot of interesting historical stuff, and even a disabled kid in the back story--what more could you ask for?

24. What was your greatest musical discovery?

Listening to live brass band music. So much fun and you can dance! too.

26. What did you want and get?

I have only one word: iphone

27. What did you want and not get?

Our annual beach trip. Just too much going down this year between hubby's new job and BIL's move to Wisconsin.

28. What was your favorite film of 2009?

I saw exactly one movie in theaters in 2009--Harry Potter and the Half Blood Prince--so I'm gonna go with that one.

29. What did you do on your birthday and how old were you?

I was driving to Plano, Texas with my mom and dad. I turned 31 which for some reason felt a whole lot older than 30--it's like I'm aging at warp speed.

30. What one thing would have improved your year immeasurably?

Can't think of anything other than that trip to the beach.

31. How would you describe your personal fashion concept of 2009?

2009 was the year of HIDE THE MUFFIN TOP. I wish I was more profound than that, but I'm not.

32. What kept you sane?

The blog. My paints. Other people's blogs.

33. What political issue stirred you the most?

The health care thing. I agree that the system is broken, but the changes scare me a lot too.

34. Who did you miss?

My grandpa. My former SIL.

35. Who was the best new person you met?

Probably Charlie's Feldenkrais practitioner--we see her a lot and she's lovely and just cares about Charlie so much.

36. Tell us a valuable life lesson you learned in 2009.

I summed up a bunch here. Other than that, I think watching so many people getting divorced showed me that it's not about who's happier or who loves each other more, but about who is willing to WORK at being married every single day. Nobody wakes up every day with birds chirping outside of their window--some days you gotta hash out the yucky feelings, recommit to each other, and figure out how to overcome what's bothering you.

37. Quote a song lyric that sums up your year.

I think I'm gonna pick one for next year instead. Next year, I'm living by the motto:

"If you do it at all, you better do it right."

--Cowboy Mouth

My MIL took this picture. He's looking at her like, "you put me in this stupid hat, and now you're taking my picture? Not cool."

Good Things

The teary-eyed edition!

1. Our local high school named a girl with cerebral palsy their Homecoming Queen. I think that every parents fear is that their child will never be included. The fear is multiplied by a bazillion when they've got special needs. I find it simply amazing that these students reached out and wrapped their arms around this girl who is so very different. These things change all the time, but right now this is the High School that Charlie would attend. I'm not saying that its perfect, but it's a hell of a lot nicer than the stories you read about kids beating up the special needs kids after school. I'll admit to some crying while reading the story.


2. No less than three people that I love dearly are expecting babies in 2010. My baby fever is in high gear now. Logistically, I have no idea how we would swing me having a c-section and being out of commission for weeks, but I'm definitely feeling the push to add to our family.



3. Disney World--we're totally going. I don't know when, but I'm ready.


4. My husband working part time all week. Hubby is a complete work-a-holic. When he leaves at "the earliest" he's home around six. This week he's working just a few hours a day and I'm having so much fun taking him on errands.






5. 24. I'm about eight years behind the times on this one, but I've been watching 24 on DVDs I borrow from the library and can you say addicted? We're all about the Jack Bauer at this house.


6. My new iPhone. It was supposed to be a birthday present. I got older last month, but Hubby? still a work-a-holic, so I got my present today. Hooray!




7. My new camera. Amazon was having a one-day only sale. I have been wanting a new camera since I busted the flash on mine almost two years ago. Add in free two-day shipping and the fact that I'd have to wait another month for my husband to buy me a gift, and it was a no-brainer. Look forward to even more pictures on this here bloggy blog!

Feelin' Good

On Charlie's first Christmas he spent the day either woozy or seizing. I knew there was something wrong with him, but I wasn't able to put my finger on what it was. He was acting funny, doing strange things with his eyes, and he seemed very subdued. On the other hand, I didn't want to ruin everyone else's holiday by freaking out about could be nothing.

Last year we ended up in the hospital after Charlie contracted some nasty virus that completely dehydrated him.

This year--gasp!--Charlie is sick again. Please feel free to knock on wood, but I'm pretty sure this year we'll be able to avoid hospitals and doctor's offices. He's sick, but he's not defeated. He's eating and drinking and still playing with his toys. He woke up from his nap happy.

It's nice to know that every illness doesn't have to be a major emergency these days. All the work we've put in is starting pay off and we can see him getting healthier and better able to deal with the little things. We're not fighting for the basics any more.

In other news. . .

I rock at RockBand.

Ok, that's a complete over-statement. I am, in fact, totally mediocre at RockBand, but I love, love, love banging on those drums. Made for a completely awesome holiday in which I was not required to make any small talk at all.

It really is the little things.

From Joyce's Kitchen

Joyce is my husband's mother.

You don't find too many people like Joyce any more.

She grew up on a cotton farm in the heart of Acadiana. She's what's known as a Cajun--the people who came to Louisiana from Nova Scotia in the 1750s. They are a unique ethnic group with their own language and cuisine.

Joyce is a true Cajun mama--she cooks and cooks and cooks and barely glances at a recipe. Tonight I pegged her down and squeezed some information out of her as she sipped a glass of blueberry wine. Tonight I'll share her gumbo recipe, which is the real deal so it won't read exactly like a normal recipe. Joyce said that growing up they always had gumbo and a "fry" at family gatherings. A fry was pretty much any large piece of cooked meat--turkey, chicken, or roast.

Ingredients:

• One whole chicken
• 1 pound andouille sausage, sliced. (If they don't have andouille in your area I recommend substituting some kind of spicy pork sausage). You can buy some really killer sausage online, though, if you've got a hankering.
• 2 medium onion, chopped
• 1 bunch green onions, chopped
• 5-6 toes of garlic, minced
• 1/2 cup celery, chopped
• 1 bell pepper chopped (optional)
• 4-5 bouillon cubes
• 3 Tbs oil
• 3 Tbs flour
• Cayenne pepper
• Salt
• Black pepper
  

1. The first step in making a gumbo is making what's known as a roux. Roux is a mixture of browned flour that gives gumbo its earthy flavor and helps thicken the broth. To make a roux, you start with equal parts flour and oil in a pan over medium heat.


2. Stir the flour/oil combination continuously until it turns the color of chocolate--about 20 minutes. You can add a little more oil if needed. Note from Joyce: never take your roux for granted. If you burn it, you'll have to throw it out and start all over again.



3. Once it reaches a good color, remove it from the heat to cool.


4. In an 8 quart stock pot, bring three quarts of water to a boil.


5. Add sausage and the chicken to the pot.


6. Slowly add your roux to the pot. Note from Joyce: never add your roux all at once--it can have an explosive effect.


7. Stir the pot well to make sure the roux is evenly distributed.


8. Add the onion, green onions, garlic, celery, and bell pepper. Note from Joyce: you don't have to add the bell pepper, but if I have one, I like to use it.


9. Add 1/2 tsp of salt, 1/2 tsp of black pepper, and a 1/4 tsp of cayenne. You can add more to taste, but this is a good starting point. Note from Joyce: Sausage adds a lot of flavor to the broth so you want to go slowly with the seasoning.


10. Add enough water to the pot until it's two inches from the top.


11. Add bouillon cubes.


12. Within 45 minutes everything will be cooked through and you can tweak your seasoning.


13. At this point you can pull the chicken out, pull the meat off and put it back in the pot. Throw the bones away or save them for a stock. Note from Joyce: You can remove the chicken at this point if you're serving it right away. If you're cooking it for later then keep the chicken in longer. I like to cook my gumbos the day before and pull the bones out right before serving.

Gumbos can be frozen for a good long while in your freezer.

We had a lovely Christmas Eve dinner complete with gumbo. Charlie really seemed to understand the opening of gifts, examining them, etc. His favorite present was the ten dollar cheap-o keyboard I bought him from Hellmart at the last minute. His uncle got him this tricycle and I have a feeling we're going to get a lot of wear out of it although he's a little obsessed with chewing on the handle bars. A little Christmas napkin took care of that!

I hope you have a lovely Christmas if that's your thing and if not, well, enjoy the time off of work. Merry Christmas.

2010

I've been making a lot of goals for 2010--apparently I've got big expectations. Here they are in no particular order:Crazy museum a few blocks from my house. I have no idea what this contraption is.

1. Run a 5K without dying.
2. Read the entire New Testament.
3. Approach 5 stores about carrying my stationery/art (scariest. thing. ever.)
4. Submit writing to a print publication.
5. Travel somewhere that is NOT Plano, Texas.
6. Try to include more regional stuff in this blog--not just pictures of Charlie at an outdoor concert, but pictures of the concert itself. It's pretty cool around here and I should showcase that every now and then.

Fountain at the park in town--the town is built on a natural spring which is believed to have healing qualities--the Native American girl is reaching out for the water that is bubbling up. One of our neighbors has water that just bubbles up in her backyard.

In addition to these goals, I'm really going to try to focus on celebrating more. I feel like sometimes I let the stress get to me and really, life is good. Celebration is in order.

What are your plans for 2010?

I think I've already put this picture up here, but look at the pretty park!

It Goes Both Ways

This week Charlie and I have been talking about cows. Riveting, no? I assume this is why you're reading this blog--for the incredible discourse on bovine populations. Anyway, our usual cognitive program was overwhelming me a little (it's possible everything overwhelms me this time of year), so I took a page from the Letter of the Week Curriculum and took a few basic things and just talked about them several times over the course of the week. I actually only did half the Letter of the Week curriculum because between therapy and therapy and you know, therapy there never seems to be enough time in the week for normal toddler stuff. Some days I would be willing to swear that it's the freakin' schedule that keeps the special kids behind. No time to talk about farms today! You've got stretching to do!



So this week we talked about cows and the letter A. There were some not-very-successful books from the library (Dear Lord, why does my child hate books so much?), puzzles, pictures, a video I checked out from the library and then decided I was kidding myself, and even some multi-sensory flash cards. I actually feel pretty good about the whole thing--I definitely think some of what I said sunk in. There was at least a glimmer of recognition when I said "a calf is a baby cow" for like the eighth time. Now, at the very least, I can tell St. Peter that I taught my kid about cows. . . that's an automatic in, right?





The teaching thing goes two ways though and I was reminded of that again this week. I was trading e-mails with another ABR mother who was feeling down and out. She's eliminated some of her daughter's spasticity, but with that, her daughter has also lost the ability to stand. Make no mistake, it's progress, but progress can be tough when it means losing something in another area.


If there's anything that Charlie's taught me, though, it's that progress is rarely linear. Maybe you knew a girl in high school who was both tall and blonde and a cheerleader and the Homecoming Queen, but for most of us, I think it's a little less cut and dry. Some of us have frizzy brown hair aren't really coordinated enough for any sort of group dance other than the line variety (this is completely hypothetical, right?) Life is series of starts and stops--a victory lap followed quickly by a skinned knee. A touchdown and a sack all in the same quarter.



Charlie "loses" skills all the time. I think we went three straight months where he wouldn't stand for a second. Now he's back and better than ever. He used to clap on command, but don't expect him to do that these days--he is so OVER clapping. He will give you five, though. Five is still cool (this week). As he works on one set of skills, another set is pushed to the side and while I know it's common, it can still be tough to take.





Almost every part of life feels the same. We don't immediately take our place on the top of the mountain; we don't have it all right away. We stumble. We lose ground, but we take a deep breath, maybe check out the scenery, and then we keep moving. Not giving up is often the biggest challenge.



Having a special needs child in my life is a constant reminder that life doesn't hand us everything. Hard work is part of the equation. I try my best to remember all that I do have and not dwell on what I don't. When life hands me a setback, I remind myself of all that my teeny, tiny baby was able to overcome and that helps keep it in perspective. I'm aware that this all sounds cheesy and sentimental, well, that's because it is--my kid inspires me. He makes me better and he reminds me every single day that most of the stuff I'm worried about isn't even a big deal.

***I really wanted to add some pictures to this post from our trip to the architectural salvage yard today, but my stupid battery went out right after I took a picture of nothing!****

Crazy?

So I'll let you guys tell me if I'm crazy. This should be fun.

Hubby got his annual bonus and there are a lot of smart things that I could use it on. And by smart, I, of course, mean more therapy of one sort or another. There's hippotherapy and regular therapy or HBOT, but the truth is that I want to spend it on one thing:

DISNEY WORLD!!!!!

This is ridiculous. I've been to Disney World no less than a zillion times. I've even been to Disney Land. My mom has a bit of an obsession and that means that every three years (minimum) she has to take a trip to Orlando. For me, Disney has been done. But for Charlie. . . well, he's never been. He's finally getting to an age where I think he would enjoy the music and some of the rides. I've looked online and there are tons of shows that I think might be fun. Some stuff will probably go over his head--he's never even heard of Mickey Mouse--but man I'd like to take him.

Sometimes I just get sad that all of the "opportunities" that I've given to Charlie involve therapy--every extra dollar and even some dollars I don't have go towards giving him the best life possible. This time I want to spend some money on some regular kid stuff--rides, over-priced food, and giant, singing stuffed animals. Besides, I really don't know when we'll have another opportunity like this--bonuses aren't guaranteed.

Hubby said he'd only agree if we went at the cheapest time and stayed in the cheapest hotel. My research tells me that the end of January/beginning of February is officially "Value Season." We're going to drive. Ten hours is pretty grueling, but one of the un-sung advantages of the CP child is that they can make awesome car travelers. Our regular trips to Dallas take about eight hours and he does a great job. It's not like he wants to go run around so videos, music, and toys make the journey go pretty smoothly. I stretch him out and swing him around whenever we stop, so Charlie's major complaint about car rides is getting changed in the back seat of the car--freaks him out.

So am I totally crazy to try to plan a Disney World trip with a two-and-a-half-year-old only a month in advance? You can be honest. I'll probably go anyway.

Me at Disney's MGM circa 1997--please note the super-cool jeans.

The Alternative View

I'm well-aware that some of you visit my blog because of your interest in alternatives. We are actively engaged in the alternative therapy ABR and people are naturally curious about that therapy and what is involved with it.

Well, I e-mailed ABR with questions about botox and back braces and I thought I'd share their answers with you guys. I'm going to summarize, though, because they have some fairly long explanations.

Firstly, I'd like to say that there is a lot of misinformation about ABR. ABR does not discourage parents from pursuing additional therapy if they would like and encourages us to have an open dialogue with our doctors about ABR. From my experience, Charlie's doctors consider ABR a non-entity. They've never heard of it, don't ask many questions, and seem satisfied once they hear that it is non-invasive. I dare say most of them immediately file it in what my father calls "the circular file." That's fine by me. I consider doctors resources and not all-knowing beings, so I don't need them to keep abreast of every detail in Charlie's life. That's my job.

On the question of Botox, I received a two part answer. The first part of the answer was, "no, Botox is in no way counter-productive to ABR." Good. I'd hate to be working against myself. The other part of the answer told me to be mindful that Botox is not FDA approved for children (no surprise there) and that at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine, they were cautioned that little is known about the long-term effects of Botox. She also advised me that Botox is not really a long-term solution, which I knew.

Her comments on the scoliosis thing were really interesting. Basically, she said that something like a back brace is designed to reduce further spinal damage and compression. It does not, however, make a person any stronger. ABR seeks to make a person stronger and also to create space between the vertebrae. So, we could get the back brace if we want--our decision. She then sent me pictures of Charlie's spine. The first set of pictures were taken during our initial visit to Montreal in October of 08. The second set in November of 09--roughly a year apart.


In this first picture you can see that Charlie's spine doesn't bend when he's tilted to the side. This is abnormal. A normal spine is quite bendy. Having a fused, locked spine can really impede your ability to get things done.

In this picture you can see that Charlie's spine is beginning to have some bend to it. It's not perfect, but being able to balance in the sitting position has become a lot easier and this is part of the reason.


There are several other structural changes to Charlie's body that I can see in these pictures, but I'll save all that for when they send me our annual review. For now, I know that if I go with the back brace or the Botox then at least I won't be working against myself. One less thing to worry about.

Hair Issues

Is is just me? Or does Charlie's hair suddenly look suspiciously like Kate Gosselin's?

Let's see them side by side, shall we?

He's so trendy.

Ruminating

I was going to title this post "licking my wounds." You see, a few weeks ago I shared that a local business person was interested in selling my artwork and stationery in her newly opened store. I was over-the-moon excited. Excited to be working with someone young and creative; excited to be out in the public eye a little; just plain excited.

Well, yesterday I sent her what I believe was my third e-mail saying that I had all of my products store ready. Mind you, she's told me very exactly how many pieces she wanted and I'd even done some stuff specifically with her location in mind. In response to my third e-mail, she replies in such a way that makes me think she has no idea who I am or what I'm talking about. If the e-mails weren't physically sitting in my in-box then I would swear that I'd dreamed the entire thing.

I tried to be upbeat and professional in my response, but it's hard to find the right words to say, "don't you remember? You told me you wanted ten canvases?!?" So off another e-mail went, but in my heart I don't think things are going to work out.

I'm hurt. My ego is bruised. I'd allowed myself to be excited--I told my friends and family, and now I'm going to have to tell them it's a no-go. I hate that. I feel like a failure which is never any fun.

Today I also got a very interesting offer to work on a project that's near and dear to my heart. It has to do with special children, and information, and hope.

So I'm wondering if this is a "sign." A sign to move in new direction, try something different, and maybe, just maybe do some good. I have to tell you, I miss the days where I felt like I was doing good on a regular basis.

Sometimes you get an answer, but it's not necessarily the one you expected.

Thinking hard on this one tonight.

Here's Charlie with the ABR machine on his head. It looks crazy, but I also think he looks cute with that goofy turban on his head!

Delightful

Last week we were all lying on the couch watching TV when our big, gray cat Max jumped up and tried to snuggle in. Charlie started trying to pet him, which he's never done before. When I say "pet" I mean pull his fur out, but it was still pretty cute.



Yesterday we went for a family trip to IHOP. When we put Charlie's plate in front of him, he lunged and swiped a piece of bacon off of it. We moved it out of arm's reach since he has a tendency to over-do on the self feeding. A few minutes later I spied him reaching and leaning with all his might until he finally snatched up a giant handful of scrambled eggs, which he then promptly shoved in his mouth, pieces of it falling everywhere. He's clearly inherited his father's table manners.


Today he was practicing standing with the OT and she told him to go ahead and dance. He promptly began smiling and clapping his hands. That he gets from me.



None of these things are huge in and of themselves, but little moments like these are happening more and more often. I'm getting many more chances to see Charlie's personality.


Leonid Bylum, the inventor of ABR, speaks often about the mindset of traditional medicine versus the mindset of alternative medicine. He proposes that traditional medicine is about "protecting" our children--preventing seizures, contractures, and dislocations. Alternative medicine seeks to enhance the lives of our children. It pushes further; it expects more. Armed with this thought, I sought to enhance Charlie's life. His seizure medicine was giving us no problems and his doctor was probably never going to suggest a change.


It can be scary to make a big decision about something like seizure medicine or botox. Maintaining the status quo is comfortable and no one will ever fault you for just doing what the doctors tell you. Venturing out on your own is a solitary experience. If something goes terribly wrong you will have only yourself to blame.


This time, I seem to have made a good decision. Keppra seems to allow Charlie to be more active and present. I'm not cocky or even self-assured, though. It really is a guessing game and this time it worked out.





A rare family photo

PS: Wednesday is the last day for the giveaway on my Facebook page. I am so loving seeing so many familiar bloggy faces over there.

Murphy's Law

It does figure that a good doctor's appointment will be immediately followed by a bad one. Well, bad is a relative term. I'm facing a lot of yuck after our second appointment of the week, but truthfully I still feel pretty good.

After some shuffling, we finally got into to see the physiatrist.

He was EXTREMELY pleased to hear that Charlie was standing, pushing himself into the seated position, and even taking a few steps. He had a student in there and he began talking about Charlie's tone and his future "diplegic gait" and I'm not gonna lie--I loved hearing him call Charlie diplegic. Charlie isn't diplegic, but the truth is that we've made a lot of strides with Charlie's upper body and even though the doctors and therapists don't want to believe that it's ABR that's helping him, I know that it is. (for those that don't know, kid's that are diplegic are affected mostly in the legs. Charlie is affected all over with one hand that's pretty good)

I asked him to roll over and push up so I could take a picture and he did! Pay no attention to the over-flowing garbage in the background:)

With all of Charlie's gross motor gain, the doctor decided that Baclofen wasn't really an option for us any more. Now, he's all about the Botox. We discussed the pros and cons, he gave me a handout, and I promised I'd think about it. I will think about it. It's a hard decision. Basically, when it comes to Charlie I have a list of priorities. They are as follows:

1. Avoid painful orthopedic surgeries
2. Avoid other painful surgeries
3. Avoid filling his body with chemicals.
4. Allow Charlie to live as normal a life as possible--now and as an adult.
5. Keep Charlie comfortable

Please note that the achievement of therapy goals is not one of the reasons I do things. I don't believe in gross motor gains at all costs. Charlie does not need to walk for me to be happy. I'd much rather him live life in a wheelchair if that means he's more comfortable. This is not every parent's wish, but it's mine and right now I'm in charge. If later in life, Charlie has a different opinion then I will defer to his wishes.

As far as I can tell, the only reason I would want Botox for Charlie would be to prevent his hamstrings from developing scar tissue. Scar tissue sounds painful. There are other reasons that the PT might want it, but that's the only one that matters to me--comfort. The doctor also said that this might prevent hip dislocation, which means it meets my number one criteria. So that's one priority against and two for it--I'm considering it.

The news that I really didn't want to hear was that Charlie's scoliosis in currently at 18 degrees so he now wants us to visit with the Orthopedist. Bletch. I really don't think I can take another doctor's appointment right now, so I think I'll be scheduling that one in the new year. Also, if you refer to my list, orthopedic surgery is enemy #1. I hope to avoid it at all costs. I did a little research (aka Googling) and 18 degrees isn't terrible, so they'll probably just follow us closely at this point. Still, I don't like adding doctors to my sheet--I like subtracting them. Adding an Orthopedist to my list is a double whammy.

One last thing! I've started a new giveaway today on my Facebook page. This week's winner has a chance to win a free print AND a pack of stationery that I design just for them. I am really having fun with the holiday giveaways so go over there and leave me a comment telling me your favorite Christmas song.

Charlie has yet to find a Christmas song that he likes. Maybe if Lady Gaga wrote one.

Shopping!

So I was visiting Swistle's site and she put up her Christmas list for her kids. Wow, did I love that post. I got all sorts of good ideas from it and immediately put together Charlie's Christmas list and sent it off to the grandparents. But maybe you'd like to see what I want for Charlie, age two and a half, mobility impaired, visually indifferent, rap-music obsessed.

I'm "borrowing" all my photos from Amazon--I'm not getting a kick-back from anyone. Although that would be nice.

First on my list is Charlie's big gift, which will be from me and Dad. We're getting him a Fisher Price Kid Tough DVD player. It's an expensive present, but I consider it the gift that keeps on giving. Mainly, we take a lot of long car trips and if Charlie's happy then Mommy's happy. We've already killed one portable DVD player thanks to drops, so I'm hoping this one will hold up a little longer. For one-hundred and seventeen dollars, it better. I am planning on checking my local Wa1mart, which has supposedly placed it on Clearance.
Charlie won't really get anything else from us. That's why we have grandparents. And aunts and uncles. I send them lists of requested items.

Two items I pulled right off of Swistle's list for her son Henry. I suspect that Swistle spends less time assessing toys for potential therapeutic value, but that's OK--I still like her suggestions.

That's why we've asked for the Crayola Beginnings Color Me a Song. Apparently you color on it and as you color, a song plays. Charlie is not wild about coloring. I don't blame him. It combines head control with vision control and the pay-off is pretty slight--scribbles. He's wild about music, though, and I'm hoping that this little gadget will at the very least give him some practice holding a crayon. Sadly, I suspect that the song will be something child-like and not something by Britney Spears filled with vague sexual innuendo. I'm pretty sure I know which one he'd prefer.
The next item on the list, again stolen from Swistle, is the Leap Frog Tag Junior Book Pal. As far as I can tell, you download "books" into the little frog and then the kids then use the frog to read the story. I'm sure I've mentioned it before, but Charlie HATES books. He's at the point now where he'll flip the pages really fast just to be done with the thing. I'm hoping a little technology will entice him to spend a little more time with a book. Could be wishful thinking, but hey, that's how I roll.

We're also asking for the Alphapet Explorer and the Fridge Phonic Magnetic Alphabet Set because Charlie's been going through a real love affair with the alphabet. Also with clocks, but I haven't seen any clock toys out there for a child as young as he is.

Additional requests include two new Signing Time videos because Mommy gets tired of watching the same ones over and over again. Charlie's love of Miss Rachel doesn't seem to be fading in the slightest.

The final item on our list is the Infantino colors and textures puzzle. Charlie's teacher is starting to introduce the concept of matching and I thought these would be easier than animals and their tails or something else that involved a lot of visual scrutiny. Charlie reserves the right to ignore any toy that makes him work too hard.

I also found these two items, which we didn't request, but that are pretty cool. There's the Fisher Price Internet Launch Pad, which allows your child to play Fisher Price games online without touching the keyboard. It also prevents them from surfing the net. This would be great for those of you that are working on using the mouse.

There's also the Lumin disk which makes bright, crazy colors in response to noise. I've thought about getting it to stimulate Charlie's speech, but I'm not sure how effective it would be--still, cool especially for kids with limited limb function.

So that's my Charlie shopping. . . now for the rest of my list!

This is Why They Pay Me the Big Bucks

By the time Charlie was three months old it was apparent that his vision was lacking in some areas. Even before the official assessments I had a gut feeling that things were wrong there. Usually, Charlie's gaze was fixed to the left. On rare occasions he would look straight. I didn't see any eye contact until he was four months old and even that was fleeting.

We had a vision therapist who came out to the house about once a month. We did not click. On her first visit, when Charlie was four months old, she brought a braille book. She also held up a piece of wax paper and asked me to look through it so I could imagine what Charlie's world was like. Personally, I think I'm lucky I didn't throw up on her. Talk about traumatic.

So, we "fired" the vision lady.

We went to this very fancy nuero-opthamologist--waited months to see her. She spun black and white drums and other oddities in Charlie's face, pronounced that he was "trying" to see, and told us that she'd like an MRI. It was reminiscent of Willy Wonka and the Chocolate Factory. That, coupled with the fact that I had grown tired of having pictures taken of Charlie's brain, led me to pick a new doctor.

So we settled on the doctor we see now. He's on the faculty at Tulane Medical School, he's been the head of the opthamology department, and he's conservative in his approach to surgery. These are all things I like in a doctor. We first saw him when Charlie was six months old and I gave a full description of his medical history, but I purposely didn't bring any films (for the un-initiated, "films" means pictures of your kid's brain). I wasn't trying to subvert the process--I just couldn't take one more doctor gee whizzing over Charlie's massive brain damage. It's like they can't help themselves; they take one look at those films and suddenly they can't see anything else, so I removed them from the equation.

At six months, the doctor believed he could see and focus, but only on one side. Honestly, I was relieved. That sounded a whole lot better than blind and even made sense in terms of what I was seeing at home.

So here we are two years later. We paid another visit to the doctor and this time he was gee whizzing over how great Charlie looks. His vision field loss is no longer detectable. He does not use both eyes together, but he appears to be using both eyes equally so that means no glasses and no patching. He was thrilled with Charlie's love of music and told me, "he's going to be just fine." He did tell me that Charlie would never fly a jet plane. I think I can live with that.

For me, this vision thing has involved a lot of going with my gut. I have stimulated Charlie's vision at home using lights and black and white images. I was open to braille if that was the best option, but I never ruled out the possibility that Charlie would see. Finding the right team was key. "Doctor shopping" is apparently some tawdry thing that people use to get prescriptions, but in this case it felt exactly like shopping. I had to find someone who had the right mix of experience and optimism. Otherwise, I would have given up completely.

Today, after the appointment, the window on my car got stuck halfway down and I had to drive home for an hour in the rain like that. You know what? I still felt pretty good.

Please ignore my blatant disregard for fashion--the stripe explosion is hurting my eyes but he looks so cute I couldn't resist post these pictures.

Stepping Up

I actually had another post planned for today. It's edited and everything, but some things have come to my attention in the last few days and I feel like I have to say something.

In the last few days I've read the blogs of two different special needs parents whose children are suffering adverse effects after the long-term use of reflux medications. Both of these children ended up in the hospital undergoing a series of medical tests. We no longer give Charlie reflux medication--mostly because it never seemed to help us--but I was always told my doctors that the medication is safe and never told about any side-effects.

If there's one thing I've learned as Charlie's mom it's that no two parents are going to do it alike. You can co-sleep or put your child in another room, you can pursue alternative or go strictly traditional, you can feed them all-organic, gluten-free, casein free or you can take them to McDonalds. When your child has special needs, there are even more decisions to make and for me, the stakes seem higher. This morning Charlie woke up at 4am whining and fussing. No amount of rocking or singing would get him back to sleep and he seemed to be getting more and more agitated. I was panicking. I was sure this was related to his seizure med change and couldn't decided if I should give him some Va1ium or just wait to see what happened. Finally, my husband was struck with a brilliant idea and took him into the kitchen and fed him a peanut butter sandwich. He instantly went back to sleep.

I'm sharing that story because I want to be clear that I'm no doctor and I'm no expert. I'm as confused as anyone else about the right things to do for my child.

But I also think that it's time we "Special Parents" started asking some tougher questions. I myself can think of at least four different questions I've never asked our doctor or even researched when it comes to medications. For example, do medical students take classes in pharmacology or is that covered more in residency? Are drugs ever tested on children? What kind of data is available about the long-term use of medications in children? Is it possible that kids with CP, with their funky digestion and limited mobility, process drugs differently than typical children? Whose job is it to tell us about possible side effects?

This doesn't mean that I think we should stop giving our children medicine. I just think we need to be hyper-vigilant. We are still our child's best advocate. I know that even as a tiny baby, doctors would recommend over the counter products that were contra-indicated for Charlie's heart condition. Who knows how many other times this happens? Doctors are stretched thin these days and we would be best served if used them as a resource and not as almighty beings.

I know this parenting thing is never easy. I know we're all doing our best. I also know that for me, I'm going to try harder to be informed about the medications that are recommended for Charlie. I'm also going to try to limit the use of medications for extended periods of time.

OK, stepping off my soap box now--don't forget to enter my giveaway to win free art or stationery! If you don't want it for yourself, it would make a great gift.

Lameness

I know I've been a lame blogger--my husband has been working 24/7 and that has left very little time me to sort through my thoughts and get them into any sort of coherent format. I've written a LOT of individual paragraphs, but no one post. His big project is due on Monday, however, so hopefully I'll get a little normalcy after that. Right now it feels like every day is week day and I'm starting to get confused. I was sure today was Monday. It wasn't.

I am, however, having a lot of things going on with my online business. I've got a sale going on--25% off everything in the store when you type in the code Holiday at checkout. I'm also doing giveaways all this month on my Facebook page. This week I'm giving away a free print or pack of stationery, so go leave me a comment and see if you win. The giveaways will get bigger as we get closer to Christmas so keep an eye out!

So that's it! Go forth and shop!

Thankful for Good Drugs

We've begun the great Pheno-wean of 09. This is thrilling stuff, I know.

As I've mentioned before, we began weaning Charlie off of Phenobarb a few weeks ago and switching him over to Keppra. We weren't having a problem with seizures, but I was concerned that he was a little mellower/sleepier than I thought your average two-year-old should be. Also, when not actively engaged, his eyes often had a glassy/half-mast appearance. I didn't know what effect the medicine was having (if any), but many parents reported problems with lethargy and Phenobarb, so I thought it was worth investigating an alternative.

I am SO glad that we did.

Don't get me wrong--things aren't perfect, but it is soooo much better than where we were before.

The first three nights after we started the wean, we saw a few jerks--like when you're dreaming and then you think you're falling. I did a lot of googling and couldn't get a real clear answer on whether or not this is considered seizure activity. Those have gone away now.

Charlie is now sleeping less and he's more restless when he does sleep. He goes to bed on time and wakes up at the same time, but his nap has almost disappeared. It's a cat nap. For the record, the neurologist assured me that Phenobarb was no way affecting his sleep habits.

Those are the negatives. Ever the conscientious journalist, I want to give you both sides of the story.

The positives are really good. The first thing I noticed was that he didn't seem to wear out as quickly. After a rigorous PT or OT session, he could still keep his eyes open. Then, he started to become more visually attentive. The vision thing is cool. He looks around more often and with more purpose--you don't need flashing lights and music to get his attention. His eyes look brighter. I'm seeing less cross-eye when he tries to focus. The PT noticed his vision when she saw him earlier this week. He's also more interactive. He giggles more readily, but he's also quick to let you know if he's unhappy. I guess some people would view that as a negative, but not me. . . I want him expressing himself.

We're currently at 25% of his original dose of Phenobarb and pretty close to full-strength on the Keppra. I can only hope that the rest of the wean is as smooth. Do me a favor and knock on some wood, kay?

Nitty Gritty ABR Information

Ok, here are all the wild and crazy ABR details. The longer we are involved with ABR, the more information, techniques, etc we learn, so I came home from this trip with a head completely stuffed with information.

This next three months will definitely be the era of the head. We have a l-ot of work to do on Charlie's head.

There are plenty of people who wouldn't be real thrilled to come home with a passel of head exercises. Actually, I probably would have been one of them six months ago. But I've had more time to think about it, and I'm starting to see the value of them. ABR says that if your head isn't right, then there's no way your neck and shoulders will ever be right. By extension, you'll always be working with poor alignment and posture, which effects every aspect of movement. In a more literal sense, it's easy for me to see that your brain is kept in your head and if your head bones are messed up then it might compromise growth in development in one of your most vital organs.

So we're working on Charlie's flat head. I've got multiple exercises targeting the very flat back of the head he's got. In case you're wondering, a normal head has a very noticeable curve along the back. If you look past Charlie's curls, you can see that his head just shoots up straight from his neck. You'll see this a lot in CP kids. Please don't fall victim if your neurologist tells you that this is because their brains aren't developing properly. I'm calling the chicken or the egg on that one.

Most of our other exercises address Charlie "shoulder girdle." Imagine you have tight, stress-filled shoulders--that's what Charlie's shoulders are like naturally. We're working on bringing them down and back ( what your momma called good posture).

In addition to all this, the good folks at ABR are developing a new type of exercise--one that in test-runs has shown great promise. The thing is, it's weird. It involves a deflated playground ball and I feel totally odd using it. Right now I'm just doing general work with it--getting familiar--so most of those exercises are directed at overall trunk strength. My brother has demanded a demo, so here' s a quick little video of it:

What did I tell you? Weird lookin', huh? Luckily, these ABR people are good in the results department, so I'm not too worried about it.

We recently finished one year with ABR so in the next few weeks we'll be getting our yearly assessment. I'll let you know when we get it and we'll see how much progress Charlie's made in a year.

We Have Nothing in Common

From time to time I get a comment about my blog--either in person or via the 'net that goes something like this, "I don't know anything about cerebral palsy/ABR/what you're going through."

I will confess that I love these comments.

For a very long time this blog was for me. It was a chance to vent and organize my feelings when they threatened to eat me alive; It was a place for me to escape. It was also an opportunity for me to interact with other parents of special needs children--my own little support group.

But when I get comments from the non-special needs community--from people who know me in real life or people who don't--that' s when I get all warm and fuzzy and think that this blog can be more than just a selfish thing. It probably sounds naive and optimistic, but I think that this blog can be a place where people can learn about disability and disabled children without fear or worry about offending someone. I can let it all hang out and they can see that while my child doesn't walk or talk, he does smile and giggle, eat peanut butter sandwiches, dress up for Halloween and finger paint. People have a chance to really look and see beautiful blue eyes and a halo of curls.

I don't know how it was for everyone else, but I was raised that it was rude to stare. It is rude to stare, but in my eagerness to be polite, I think that I never spent more than six seconds looking at a disabled person. I would fix my eyes at some point about three feet above their heads and act as if they weren't there. Doesn't take a rocket scientist to see that wasn't exactly a solution.

I'm happy that this can be a place for everyone--not just the special mommas. This is a place where someone can stare. My deepest and most Pollyanna-ish wish is that we could all learn a little something from each other. I can read about normal kids and see that sometimes Charlie is completely normal or that sometimes the moms of typical kids want to rip out all their hair in frustration too. You can read my blog and find out that I've actually driven forty-five minutes to buy a pair of shoes for a kid who's feet don't touch the ground or that my saddest moment in the last six months was when Charlie ripped my iPod out of the player and it didn't work for two days. I can read almost any blog and see that we all deal with illness, family drama, Target shopping, and difficult decisions. The distance between two people isn't nearly as far as we imagine. We all have joys and sadness and heartbreak and triumph. The lens may be different, but the feelings really aren't.

So if you read this blog and have "nothing to say" then that's fine by me, but don't feel like you don't know anything about my experience or that your input isn't valuable. We're all learning from each other.

Well, We're Here Again

Well, we're in Plano again--same hotel, similar room, same families, same food.

A little over a year ago I started this ABR thing. I packed up my child, my mother, my father, I got on a plane (something I hadn't done in years), and off we all went to Montreal, Canada. I was fairly certain that I had lost my mind.

I was also certain that I had to go, and had to try this therapy. Charlie's doctors had already told me that we were doing everything we could do and still my little boy could barely move, could barely pick up his head, and could only roll off of his stomach. He definitely couldn't sit.

All through the ABR training, I would have these flashes where I realized how crazy it all seemed. I mean, they wanted me to push on my kid with towels. Towels don't feel very scientific.

I was relying on the experience of others. Countless parents had told me that ABR helped their children more than anything else. Jacqui at Terrible Palsy had documented her son's progress and I hadn't seen anyone else get those kinds of results.

So I was stepping out on a limb and trying something untested. I knew full-well that it could be a disaster--a waste of time, money, and energy, but felt that it was a risk worth taking.

ABR has been so good for Charlie. Within weeks of starting it, he was rolling onto his stomach and commando-crawling towards things that interested him. His sitting improved, his vision improved, his reflux got better. It was obvious that we'd made a good decision for our family.

The amazing thing about ABR, though, are all the families that don't have blogs, never post a video on Youtube, or a picture on the support board. These are the kids that blow you away when you see them after three or six months. It's also really inspiring to talk to the parents who have been doing this therapy for a long time. Today I talked to Julia' s mom, Carolyn. Julia went into cardiac arrest during a routine hospital procedure at two months of age. After this happened, she was blind, deaf in one ear, and didn't respond to touch. The doctors told her parents that she would probably spend the rest of her life in a persistent vegetative state. These days she's in a wheelchair, but she can see and hear, and even talks some. These days she's about seven and working on self-feedingand reads age appropriately. She reads. Swish that around in your mind for a few minutes. I'll be honest, if my kid didn't respond to touch, I wouldn't know where to start. It's crazy what is possible if parents are dedicated to their children.

Well, I'm exhausted. This trip has kicked my butt and I still have some more training tomorrow morning. I want to talk all about our Phenobarb wean and what body parts we're working on next, but I'm calling it a night.

Freudian Slip

Well, I missed my appointment with the Physiatrist today. They told me two-fifteen and I heard two-fifty. I showed up smiled, and they told me I'd missed my appointment. We go back next week.

I definitely think it was some sort of Freudian thing. I really don't want to go to this appointment. I've put it off for about two months, but the PT keeps asking about it, so I figured I'd better go ahead and schedule it.

You see, I'm facing what I would call a pressure sandwich.

I've got the physiatrist who wants to put Charlie on Baclofen. I don't want to put him on Baclofen, but I'll still have to listen to the benefits of it. Including some stuff that I think is total crap. Stuff like, "it really only effects the tight muscles." Right. An oral medication. Sorry, but my barely-passed-Biology brain finds that a little hard to believe. Also, Charlie's PT and OT feel strongly that Baclofen is not the way to go.

The PT and the OT are lobbying for Botox injections in Charlie's hamstrings. The doctor, on the other hand, doesn't think that Charlie's condition is severe enough to warrant Botox. All of Charlie's alternative peeps (which includes my MIL and my husband) think that botox is an unwarranted poison that doesn't need to be anywhere near Charlie.

So you can see the situation I'm in. No one agrees. There's no consensus. Also, all these people and all these opinions won't be with me in the doctor's office. There, I'll be alone.

Is it any wonder I don't want to go?

Love at First Sight

Today Charlie's OT brought over this:




I love this thing.



It's a Gator Walker. Before we had a Rifton Pacer, which looks pretty much the same, but in real life it's much bulkier and has all these different parts. Charlie would just stand in it completely befuddled. In this contraption he's getting the picture much quicker. Seriously, I think I have a crush on this thing.

Tomorrow we have an appointment with He Who Loves Baclofen aka our Pysiatrist. I'll keep you posted. Also, I am now completely reminded of a little tidbit I've been meaning to share with you guys. A little while ago, when I was trying to make Charlie's appointment with the Physiatrist, I couldn't get the number of his pediatric group to come up, so I just googled his name. Well, wouldn't you know it, a link to his Facebook page came up and it's private but I was still able to see what has to be the goofiest picture ever. I laughed for a couple of minutes. You should try it--Google your kid's doctors. Maybe I'll enjoy my visit a little more if I just keep picturing him in a funny hat?



So, I'll let you know how the appointment goes, and I also promise to post some incredibly fabulous Charlie photos I took this weekend. Try not to get too excited.

My Interests Meet

I don't spend a lot of time discussing my art on this blog, but I think anyone who reads here regularly has probably picked up on the fact that I like to paint. I have a small business, but Charlie is my number one priority and sometimes the art stuff has to take the back seat. Those are the choices you make.

I'm happy that in the next few days I'll be working on a project that combines my love of art with my new-found experience with the disabled.

A fellow blogger has asked me to do a piece of art for her son's new room--he's an adult living in a long-term care facility. Like any mom, she wants the place to look nice and she's enlisted me to help.

I'm really excited about this. I'm planning on doing something that represents his local area since that is pretty much my thing--I like to paint things that are more than just pretty--I like a little meaning as well.

I know he likes bright colors, so I want to include that, but I don't want it to appear too childish--he is an adult. Like I told my husband, I want a Pixar film and not an episode of Barney. His mother also told me that he likes to run his hand along things, so I'm hoping to include a lot of texture in the piece.

So, bright colors, texture, and something with a little meaning. I'm psyched--or some other dorky eighties term that denotes excitement

In other art/craft related news, our very own Ellen is looking for contributors for a project she's doing with Nickelodeon. The project is for a section of the Nick website known as Parents' Connect and it will be a holiday countdown. She's looking for easy craft projects that young children can do with their parents. These should be craft projects that can be done with a child under six years of age. It could be a new project or something you've already covered on your blog. Basically, you write a quick how-to and then snap some pictures of the project in process. She's looking for stuff like:

• Decorations
• Cards
• Gifts
• Stockings
• Wrapping paper
• Green/eco-friendly holiday fun

And she means all the winter holidays--not just Christmas, so no worries if your family celebrates Kwanzaa instead of Christmas. If you're interested, please let Ellen know--her e-mail address is lovethatmax [at] gmail [dot] com. Your article will include a link back to your home blog and Nick gets about five million visitors a month.

Pictures taken at a Zoo 2 U party.