Wednesday, April 30, 2008

Not That You Asked

I was all set to complain about the EEG today; the instructions for the procedure clearly state that you should not allow your child to sleep the full night and that they should want a bottle during the procedure. So, they want your child to show up cranky and hungry. Charlie, however, took a nap in the car on the way over and was in a GREAT mood. It was our best EEG yet although they didn't get any recordings of him sleeping.

I tried to discern something from the squiggly lines, but I'm no doctor. The tech raised one eyebrow once, but other than that she was stone-faced. Someone will call me in a few days after the epileptologist reads it.

So, rather than complain (since I don't have any complaining to do), I'm going to talk about Miley Cyrus' picture on the cover of Vanity Fair.

Here's my opinion: It's a picture of a clearly topless fifteen-year-old girl. Rather than blame the girl, let's blame the photographer. I know that Annie Leibovitz is supposed to be a big deal and everything, but shame on her. You don't take pictures of fifteen-year-old girls without their shirts on. It's that simple. Maybe Miley was OK with it and maybe she wasn't. Point is, she's not at the age of consent. She's not even really at an age where she can draw the line between "art" and exploitation. From what I've read, even parental consent doesn't allow someone to take nude photos of a minor. There were about a gazillion photo people there and SOMEONE should have stepped up and said, "she not eighteen, you can't legally do this." I bet Vanity Fair has a lawyer on staff--didn't anyone think that about this? It might be a beautiful photo (personally, I don't think it is, but I'm no photographer), but that doesn't make it OK to take pictures of young girls without their clothes on. If this wasn't a famous girl and this wasn't a famous photographer than this would be an issue for the police. Instead, people are asking Miley and Annie to give quotes about the photo. For crying out loud, she is fifteen and a very reputable photographer asked her to do things to get on the cover of Vanity Fair. If that isn't manipulation of a minor then I don't know what is.

My two cents.

PS: I've got new pictures on Flickr and a new video on Youtube. Let me just say, the Youtube video has me with wet hair and in my sleeping clothes. I didn't know that I would be in the video too. Just try to ignore my heinous appearance and focus on the baby.

Tuesday, April 29, 2008

Not Covered in Med School: Parents Like Me

Hydrocephalus

Microcephaly

Phenobarb

Therapy

Brain Injury

But also. . .

Clementine

Beer drinking

and Zen parenting.

The visit to the nuerologist was per the usual. We covered the basics, but we always ramble off into strange territory when no one is looking. She reminds me of the gals from Coffee Talk with her quick mouth and N’awlins accent. She doesn’t hold anything back, so you don't have to either. You can tell her that you hate a certain doctor, or that you’re not interested in pursuing a course of treatment. Your opinion matters.

First, we get the two residents. At this point I talk to them like residents. I ask them if they’ve read the chart—I like today’s doctor who admitted he’d spent about five minutes with it. I had one come in once and ask me “what brings you here today?” Uhhh, that would be the massive brain bleed and multiple abnormal EEGs; not to mention the instructions to return in four months.

So, I did a lap to cover the back story and then proceeded to fawn over my child’s most recent accomplishments. Go ahead and get it all out when you’re dealing with the students because the “real” doctors are busy and will have very specific questions.

In comes the big doc like a whirlwind. The thing is, she’s so fast-paced that your thoughts get all jumbled and stuff just starts falling out of your mouth. For me, it’s a weird combo of my normal, dumb blonde talk mixed with a recently acquired medical vocabulary. The end result is I say things like: He’s freakishly hyper-reflexive.

I also mentioned that he has a Pavlovian response to stretching since he laughs whenever I do it. He’s so used to the singing that goes with stretching that he giggles even if you leave out the song. The doc finds this hilarious and wants to know what song I sing. Now I’m forced admit that I actually hum the tune to Clementine because I don’t know the words. Even better--now she orders one of the residents to Google the lyrics and print them up for me.

She fiddles with Charlie a bit, taps his knees and elbows and looks at him. She asks about his eye doctor, chides me about finding a new neurosurgeon, and tells the students that I’m the kind of mother who’s in complete control of my child’s treatment. She noticed that he’s doing a pretty good job attending to midline and told me to just keep doing what I’m doing.

We’ve got an EEG scheduled for tomorrow to make sure that he’s not having seizures any more. I told her that I didn’t care about the EEG and she said she completely understood—she just wanted to make sure she wasn’t missing anything. I can understand that, so tomorrow I get to take a cranky, under-fed baby to have electrodes glued to his head. Sweet.

Monday, April 28, 2008

Report Card

What She Wore: black, v-neck tee; faded Levis; baby-blue tennis shoes. I didn't really go anywhere, so the shoes were a bit of an afterthought.

What She Ate: Busted! Chicken nuggets. I'll be good tomorrow, I promise.

Well, we last saw the neurologist in January. The visit was kind of rough with words like seizure disorder getting thrown around. The neuro did think that Charlie looked good, but things were still pretty scary.

Anyway, we finished our last course of meds over a month ago, so we're checking in tomorrow. I decided to list all our accomplishments since mid-January. It makes me feel better--sometimes I forget how far we've come--especially when we're reaching what feels like a plateau.

  1. Late January he prop-sat for over a minute. He can still do this, but he'd rather not and fights us pretty hard on it. Basically, he'll only do it on the lawn and I think that's mainly to keep his face out of the grass.
  2. Consistently rolls from front to back.
  3. Improved eye contact.
  4. Began shaking toys to create noises.
  5. Uses large gross movement to operate toys like his piano, press board, music cube, etc.
  6. Figures out how new toys operate.
  7. Increased use of right hand.
  8. Picks up things that he has dropped.
  9. Holds bottle pretty consistently.
  10. Appears to know three words and his name (up, mookie, and diaper).
  11. Anticipates during play and some daily routines ( he may have already been doing this, but these days it is very obvious).
  12. Showing beginning signs of purposeful movement while on stomach (wiggling forward)
  13. Tolerates table food although he does have some trouble moving it to the back of his throat--no problems with baby food. Self feeds with the safe-feeder and Cheetos and french fries.
  14. Touches toes!
  15. Participates in verbal exchanges although he makes no babbling sounds.

I'm writing all this down because I'm sure I'll forget half of it when I'm there. The Hub and I have discussed it and we are not interested in another course of medicine. We feel that the last batch did the job or else we wouldn't being seeing so much improvement. Even if we have an EEG that we don't like, the Hub doesn't want to do medicine again. Our next batch would probably be daily injections and we just don't think it's necessary. This list is to help me stay strong.

And just for laughs, here's a video of Charlie "singing." My husband sings into his hand and he does it too--he sounds kind of like the dog, though.



Sunday, April 27, 2008

They Shouldn't Put a Bullseye on the Sign

My husband went out of town for two and a half days--that's it. In the course of these two days my house became a hurricane of crap. Strewn from here to Havana I've got clothes, bottles, dishes, take-out containers, and baby toys. Not to mention the art projects I've got going on the floor of the den.

When the house is like this I start to lose my mind a little. All I do is walk into the kitchen and my mood turns foul. I also get a little crazy. I'm all Britney in a pink wig yelling wacky stuff and plotting major home improvement projects.

In one of these fits, I rushed off to Target to buy a storage ottoman. We don't have a coffee table, and I thought one of those nifty items would provide us with a place to prop up our feet and a black hole to throw baby toys into. Dual purpose! Laziness and, well, sloth. Kind of sad, really.

So, I go to Target, baby in tow, to pick up an ottoman. Only problem is they don't have the small kind--only the larger version. No biggie, the large one will look nice with the added bonus of holding more crap. It doesn't fit in the cart, though, and OF COURSE it's not in a box. I rest it across the top of the cart and push it to the register. I was certain that a Target employee would spot this madness and offer to help me. I was wrong. I passed a lot of Target employees, but none of them actually seemed interested in the plight of a woman who's pushing an unwieldy ottoman and a baby through Super Target. I'm sure they had bigger things to worry about. Even when I checked out, the girl took no interest--she was polite enough to offer me the chance to save $12.00 by opening a Target charge card today--but ask me if I needed assistance getting my purchases to the car? Not so much.

I'm pushing my cart through the parking lot when it begins to rain.

Then, the ottoman falls off the cart.

When I get it back on the cart, I see that the faux leather now has a scratch. A man tells me that I should bring it back, but the thought of pushing baby and ottoman back across the parking lot, in the rain, into the store sounds pretty freakin' terrible. I figure I'll get the thing home and hubby can accompany me on a return trip to exchange it. I load sleeping babe into the car, pop the trunk and lo and behold.

It doesn't fit.

At this point I gave some serious consideration to just leaving the thing in the parking lot--an eighty-dollar offering to the Gods of stupidity. A nice couple came along at that point, though, and insisted on helping me. They probably did that since I was sort-of crying on top of the ottoman sticking crazily out of my trunk.

Finally, we got the ottoman into the car with half of it in my lap and the old guy basically slamming the door shut into the other half.

My husband says he'll return it tomorrow. That's good because I would hate to have to kill someone.

Saturday, April 26, 2008

Congrats


Congrats to my baby brother who just finished his last law school exam today! So proud and so glad it wasn't me.

Good luck on the bar!

PS: Please excuse my dreadful appearance--I was about seven months pregnant in this picture.

One Unspectacular Quirk

Jenn tagged me, so here goes. I've done this one before, but I tried to come up with six new things that are unusual or different. It was a little tough since I'm so completely normal. . . snicker.

Probably the weirdest thing I do is something that I've admitted to almost no one before this. My husband knows and at this point he just laughs when I get started--or tries to convince me not to start in the first place.
I make people handmade gifts and then never give them to the intended recipient. This probably first started around six years ago when I cross-stitched a gift for my friends who were moving into their first apartment as married people. It was a Geisha-esque woman (my friend loved Asian stuff) wearing a Kimono is colors to match their bathroom. I bought a shadow box to put it in and everything. I then proceeded to lug it along for three different moves and finally gave it away to Goodwill when the couple in question got divorced.

I made a watercolor when some other friends got married. I researched all the locations related to their wedding and created a full-colored map with sketches of the church, reception hall, etc. I've still got it in a box somewhere and they're expecting their second child next month.





Then, another friend got married and, of course, I felt the need to create something. I became entranced with the fiber art of the very famous Susan Shie and decided to make a journal quilt of my own. It's nothing like Susan's, but I created an art quilt based on the wedding--I painted and journaled and hand-quilted for quite awhile. It's got the verses from their services, the lyrics from teh songs they danced to, quotes about love, and my thoughts about the couple. The binding isn't completely finished, but I'm not sure if I'm going to bother--I mean, it's not like I'm actually going to give it to them, right?

I never even noticed that I do this until I started working on a gift for a one-year-old this week. As I sat there working on it I knew I'd end up at Target buying something brightly colored and plastic.






This is the thing: when you make something you put your sweat and love into it. It will break your heart if the recipient doesn't "get" it. So, I guess I spare myself the heartache and just keep these little projects to myself.
Well, I wrote an entire post on one quirk. I guess I'll do five more tomorrow.

Friday, April 25, 2008

OK

What She Wore: blue jeans; blue t-shirt with spring-colored stripes; brown, slip-on tennis shoes.

What She Ate: Piedini Milanese. I'm having leftovers for dinner.

OK.

My husband would know that this is not a good introduction to a conversation. Usually, when I lead in with OK that means I'm hatching some evil plan. Typically, I've got no clue as to how I would pull this off, but I still want to talk about it.

So. . . OK!

I want to start a play group/mother's group for the mommies of kids with special needs.

In my head there's a website with pre-planned activities. Moms can take their kids to the things that appeal to them and that work for their schedules. It would have a lot of the same activities as a normal playgroup, but there wouldn't be any stress and pressure. Your kid is four and they can't walk? No biggie. G-tube? Been there, done that. There'd be less glaring reality and more having fun with your kids. Wheelchairs/AFOs?/non-verbal--the more the merrier. I mean, I would love to go to some activities with Charlie and I have no problem discussing him and his issues, but I feel like kind of a downer when I'm around people who aren't family.

I'm not sure if I could pull this off. I'd have to find some moms of special needs kids--maybe I could distribute fliers? Better yet would be if I could get some pre-printed signs. Of course, those are expensive. Hmmmmmm.

So, Internet people, give me your thoughts. Maybe all the brain power will generate enough energy to get me going.

Thursday, April 24, 2008

Hell Yeah

Remember how Charlie couldn't grab his own toes?



How you like dem apples?

Wednesday, April 23, 2008

Fractured, Part Two

What She Wore: Green capri pants; black v-neck t-shirt with this tulle-like stuff as trim on the collar and cuffs; black, beaded mules.

What She Ate: For lunch I had the very virtuous chicken and vegetable soup. For dinner--ENCHILADAS! It's pretty sad how much this made my day. Even better? I've got leftovers for lunch tomorrow.

Do I think Oprah is a Christian? Nope.

I do think that lumping her together with Obama and the Occult makes somebody look like a raging racist. I also think it's difficult to take a religious message seriously when it's lumped together with a book promotion. Oprah's the devil! Prove you love Jesus and buy my book. Correct me if I'm wrong, but Jesus never once tried to get money out of me. For the record, the only church I regularly tithed to was the one that told us every week that the service was a gift to us. Nothing inspired me to whip a checkbook out of my carefully matched handbag more than that. Sometimes I feel like so-called Christians are actually working against Christ.
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I bought a book on writing and it's had a rapid affect on my blog: I'm completely blog blocked. I don't have one thing to say, so instead I'm watching Friends DVDs and ignoring the internet as best I can.
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My child is as pig-headed as I am. He's mastered rolling from front to back with the precision of a sychronised swimmer. He's also completely positive that he wants nothing to do with rolling from back to stomach. Don't try it. Don't even think about it.
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He's also getting pretty snobby about his toys. He wants the higher-level toys now--rattles and teethers are rapidly becoming as stylish as acid washed jeans. Unfortunately, he has a lot of trouble operating most toys with his lack of head control, crappy vision, and poor motor skills. The end result is a lot of work on my part to get him operating his own toys. At the end of the day I know I'm as tired as he is--maybe more.
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Dawson's Creek Season Five is just great. I've also found that I've played Dawson and the gang so often during Charlie's naptime that putting the DVD in the machine has as soporific effect on the little tot. As the credits roll, he starts to yawn and he's usually asleep by the first commercial break. How's that for suggestive?

***PS: I whipped out my trusty bible and googled it--there's no mention of a swift rise to power in the bible. This is why I think anyone talking about the bible should be required to use proper citations. That could just be the anal English teacher in me, but I don't think so.***

Tuesday, April 22, 2008

Some Idle Tuesday

What She Wore: Dark teal shirt with a shirred, scoop-neck; navy blue capri pants; gold beaded sandals. This wasn't my usual matchy-matchy outfit, but what can I say? I live life on the edge.

What She Ate: For lunch I went with my parents to their usual Tuesday place. They bring up the average age of the joint, so when I show up with Charlie everybody just freaks out. He's very popular. Anyway, I had the BBQ pork sandwich. For dinner I had noodles with marinara and Parmesan cheese--my fallback.

I will say that in the life of a special needs momma there comes a point where you're tempted to give in to self-pity. You wonder why these things happen to you. I've been pretty lucky, though. When I first began working in Arkansas I worked with a guy that was always known on my blog as Mr. K. One of the first times I ever talked to him, he told me that he'd spent the night before prowling around crack houses looking for his niece. Over the course of my two years in Arkansas, this golden-girl did a stint in drug rehab, ran away from home multiple times, got arrested, and started dating a guy who physically abused her. She'd call her parents when he beat her. Daddy's little girl also opted not to attend college, which probably broke her mother's heart.

When Charlie was in the hospital, the entire K family was there constantly. Scrubbing in one day, I said to Mr. K, "You know, kids can give you heartache at any age. Your child could be born completely healthy and then they'll turn sixteen and get into drugs and it'll just kill you."

"Yeah," he responded, "and it doesn't hurt any less then." I knew he was thinking about his niece.

You see, it's a truth in relationships: the longer and deeper you love, the greater the chance you'll get hurt.

Your daughter could be born way too early.
Your son could contract meningitis at age two.
Your grandchild could be diagnosed with autism at age three.
At age five, your daughter could be diagnosed with cancer.
Your daughter could come home pregnant at age fifteen.
At age seventeen they could be killed in a car accident.
Your son could join a gang.
At age twenty, your child could announce they have a gambling problem.
Your spouse could leave you.
Your parents will pass away.

Life is like that. We all experience our heartaches. We open ourselves up and we get to have the joy and the pain.

Rather than ask why this has happened to me, I try to remind myself that this happens to everyone. I might just be a little ahead of the curve.

If you're wondering about the title, well, Google it.

Monday, April 21, 2008

Two Steps Forward. . .

What She Wore: Gosh. . . I can't remember what I wore today. Must not have been anything great. Now I've got on Scottie dog pj pants and a t-shirt.

What She Ate: For lunch I made macaroni and cheese with rotel mixed in. This is super yummy and easy. For dinner I did another one of those Stouffer's skillet meals--beef, potatoes and green beans. My husband loves having a warm dinner so much that he's forgotten that he doesn't like pre-packaged food.


Well, I'm starting to get used to the ebb and flow of things over here. Charlie has, once again, lost a little neck strength. A quick measurement on my part revealed that he has gained another half a centimeter in head circumference. I don't know why I didn't think of it immediately. Whenever he has a "strike" in sitting I find that his head has gotten a little bigger. He'll catch back up, so I'm not worried. Actually, I'm thrilled because a growing head means a growing brain. So many kids with head injuries are behind the curve on head growth.



So, forward and back. You'd think I would have gotten used to the two-step by now.


For those who are interested: Charlie's PT and OT would like to order him a Rifton chair for when he's playing with toys. He should be getting casted for his DAFOs pretty soon as well. Do you know those things cost $900? I am so thankful that early intervention is going to pay for those because my insurance doesn't cover anything for the feet. Whew! I didn't have an extra grand hiding in the couch cushions.

Sunday, April 20, 2008

BPA Free in '03. . .er, '08

A geometric print top in blues and greens; a denim skirt; blue, faux-suede flip-flops; blue plastic bracelet.

What She Ate: I had a cheeseburger with BBQ sauce and bacon for lunch and for dinner I was still full, so I had a side dish of macaroni and a side salad.


We're in the process of going BPA-free over at my house. If this sentence confuses you than don't worry--I was the exact same way 48 hours ago. Of course, some people watch the news and those people may have already heard about this.

Basically, BPA is an abbreviation for Bisphenol A. In studies, Bisphenol A has been shown to to have a toxic affect on animals. BPA is used to make a variety of plastic products including water bottles and most clear plastics on the market today. Bisphenol has a tendency to leach into things--especially hot liquids.

Guess which hot liquid is frequently stored in clear plastic bottles? If you guessed formula then you're right on the money. Infants who are on formula are exposed to crazy amounts of the stuff.

Charlie doesn't take warm formula--the little nut prefers a cold bottle, but even so, we've decided to go BPA free over here. I can't, in good conscious, allow my child to potentially be poisoned because it's a hassle and expense to go out and buy new bottles.

Here's a couple of things that tick me off about the whole thing:

First, the available data about BPA came out in around '06, and yet I've never heard about this until Canada announced that products containing BPA would no longer be sold in their country. I have read a ton of parenting books, and never once have I read one thing about this.

Second, BPA free bottles are actually cheaper than the bottles I purchased originally. They're less than half the price. The use of BPA appears to be a cosmetic thing--buy the pretty bottles! Poison your children!

Thirdly, I feel like the medical establishment should take a little notice of issues like this. Charlie has brain injury--it's not like we have brain cells to waste here. When he left the hospital EVERYTHING was regulated: the amount he was fed, how the formula was prepared, how often he was fed. His medications were on a schedule and I was given a list of over-the-counter medications and foods he wasn't allowed to have. So, I'm following these instructions to the letter never knowing that all my careful preparations were being served in controversial containers. I can't tell you the number of medical professionals who've warned me against Johnny jump-ups or wheeled walkers, but no mention of bottles leaking toxic chemicals into formula.

I feel duty-bound to say that the research regarding BPA is still confusing--it's not clear-cut. I, however, am not going to wait for science to prove that BPA causes autism, a lower I.Q., ADD, or whatever else. I'm not in the habit of making myself or my family a guinea pig while the scientists get around to proving stuff. Smoke doesn't always mean fire, but you'd be a fool to ignore it.

PS: If you are interested in going going BPA free for your children then I found this website which is pretty comprehensive.

Saturday, April 19, 2008

Tea Leaves

What She Wore: Black capris; olive green, baby-doll tee; gold, beaded flip flops.

What She Ate: Stopped on the way home from a birthday party to have some muy yummy enchiladas from Ninfa's.

My MIL has been experiencing some abdominal pain. We think it's probably gall stones, but she's had an ultrasound and won't find out the results until Monday.

One of the substitutes at her school has "the gift" and reads tea leaves. My MIL asked her to do a reading because she wanted to know more about this abdominal pain. She didn't tell the reader what she wanted to know--just asked her to do it.

The reader looked at the leaves and said, "You're worried about your grandchild." My MIL said, "Well, always, but that wasn't what I really wanted to know about it." The reader responded, "But it is in your heart. He will be just fine. He is surrounded by angels and light."

Kind of cool, huh?

PS: Guess who LOVES cheese dip?

Thursday, April 17, 2008

Shucks *Edited*

What She Wore: Red, v-neck tee; navy blue running pants; navy blue and gray tennis shoes. I better do some laundry ASAP, or I'm going to be wearing these running pants all weekend.

What She Ate: I haven't had much yet--it's been a busy morning.

Well, I was so excited about Charlie's progress. He's been picking up his head a ton, he's been rolling over a lot more, and he's been rocking out with the eye contact. He's also making more attempts to grab things that you offer him.

His teacher came yesterday and they had a wonderful time. She really "gets" Charlie and knows how to work with him. He really performed for her and she wrote a glowing report at the end of the session.

I was pumped and couldn't wait for his OT to come today.


He didn't do so well for the OT. I do believe my little munchkin has an attitude problem.

She upped the ante. She was bending him this way and that and stretching him like nobody's business. She wants to get him a special seat, so he can sit and play with toys.


I don't know why, but this upset me. I guess, when we make progress, I get so excited that I forget that we're still behind. I feel like he's doing so well I want to shout from a mountain top and then I get reminded that we've still got a big distance to go. Sigh.

Still, progress is good. Maybe I'll have a cookie.

Ok, in the spirit of celebrating progress, here are some videos. I apologize to those of you who can't see them. I'll do my best to describe them.

First, I have Charlie's creep. He's actually starting to move across the floor. He stops to gnaw on his hands, but he's still making progress.




Next, is the reason I will now have to be a lot more careful with Charlie. He's getting a lot better at rolling himself over. In this video we almost had a major oops with the chair.


Tuesday, April 15, 2008

Not So Bad

What She Wore: I won't bother you with horror that was today outfit. It wasn't pretty.

What She Ate: Chicken noodle soup for lunch; turkey and stuffing for dinner. And a lot of cookies.

After Charlie was born, I had all these fears. The biggest of the bunch was the fear that I would never be the same again. I felt like the wounds were too deep. I just didn't know how it would be possible for me to feel completely happy again. I would wistfully think about the days before Charlie was born--before I knew how hard it would be. I couldn't imagine feeling that carefree again. One of the things I specifically remembered was dancing in the kitchen. For years I would blare the radio and just boogie down in the kitchen. Especially good days would be those where Hub would join in. We'd just dance in the kitchen like two fools. How could I ever be that happy again? That girl who danced in the kitchen didn't know anything about hospitals and children dying; she didn't even know what cerebral palsy was.

I'm going somewhere with this, I promise.

Tonight I strapped Charlie in his stander. While he's in there we have to come up with things to keep him entertained. We're also trying to add time--we're up to fifteen minutes. You can only push the kid up and down the hallway so many times when you're doing it for fifteen minutes. We played with some toys, but he loves to move around. After pushing him down the hallway for the zillionth time I came up with a new plan. I cranked up my iTunes and started wheeling him this way and that to the music. I after grooving to Shake It by Metro Station I passed him off to my husband to give my back a break. I couldn't resist shaking my bootay to Cupid Shuffle, though. So there the three of us were, in the kitchen, dancing. It struck me that this was one of those things I was so worried about. Would I ever dance in the kitchen like no one was watching? Yes. It may not have been exactly the way I pictured, but I was in the exact place I wanted to be.

Good day.

Monday, April 14, 2008

The Cat Came Back

. . .but it wasn't the very next day.

Two weeks and five days after his mysterious disappearance, Max appeared in my mother-in-law's backyard. She lives a little less than two miles away from us.


He got a pretty ugly gash on his side and he's really skinny. Other than that, he seems fine.


What has he been up to for the last three weeks?

Mush

What She Wore: blue jeans; brown, slip-on tennis shoes; purple t-shirt that says, "I Heart NOLA"

What I Ate: A Cuban sandwich from this hole in the wall that my parents like; for dinner I'm going to try one of those skillet meals from Stouffers. I'm pretty sure it won't be spectacular, but it will be warm, on-time, and easy to make, so I'm giving it a shot.


I'm feeling pretty brain dead. I've been waiting for Charlie to get some teeth for a million years. I won't go so far as to say that he's actually teething, but something is going on. Maybe he's thinking about teething. He's trying to put his entire hand in his mouth, and he wakes up a couple of times a night for no particular reason. Luckily, he's not fussy. Well, he's fussy for him, but Charlie's version of fussy makes other babies look like miniature Napoleon's bent on world domination. He's an easy-going baby.


What I'm trying to say here is I'm tired and so is Charlie. I'm having trouble creating a coherent entry. I've actually written two already that don't make any sense. Charlie's having trouble getting enthused for therapy, but I don't blame him. I'm having trouble getting enthused to get up and put on clothes.


So, I'm tired. When is nap time?

Saturday, April 12, 2008

Total Freakin' Crapshoot

What She Wore: Khaki shorts; khaki tee with a scoop neck and blue, yellow, and green stripes; blue flip-flops.

What She Ate: So far today, almost two giant cinnamon rolls.

Last night I had this major realization. An "oh sh__" moment, if you will.

We discovered that Charlie had a pretty severe seizure disorder sometime around December. After I cried my eyes out, I paid a visit to his neurologist. Have I mention that I'm crazy about our neurologist? Now, I'm even more crazy about her. Hell, I need to go buy her a present or something. The doctor suspected that Charlie had a pretty rare form of seizure disorder. It can be hard to detect in children with a previous brain injury because often times the EEG is inconclusive. What is clear is if the disorder isn't treated post-haste, then the child will lose ground developmentally and will probably not progress as far as they could.

So, right after I found out what was going on with Charlie, well, first I cried a lot. Then, I did a ton of research and talked to his neurologist about our course of treatment. His neurologist is the kind of doctor that is very good, but is hard for some parents. She's brutally honest. She told me herself that she had to ask another neurologist what to do about Charlie's case. You see, when a kid is already behind developmentally, it's a toss-up as to whether or not you should try the most aggressive treatment. Basically, the doctors have to ask themselves if it's worth it to put the whole family out for months when the kid has already got some issues. If seizures are their only problem, then the answer is clear: do whatever you can for this child. For children with a host of issues, things are a little blurrier. The doctor told me, "I had to ask my colleague if I was getting too invested." At the time, I didn't understand what she meant by that. Last night, it was as if a light bulb went off.

As part of this whole "my child has cerebral palsy" thing I read the blogs of other people who have kids with CP. Reading the blog of another parent, I saw that their child had seizures. I also read that their neurologist felt that there were too many issues associated with anti-epileptics. The decision was made not to treat the disorder.

Whether or not this is the right decision I really can't say. It's not my child and every child's brain is different and every child's development is different. Some children have horrific side-effects as a result of anti-epileptics. Charlie responds fabulously with little or no side-effects. I do know this: I am so grateful that our neurologist thought Charlie was worth the fight. I'm glad she's invested. I want to give Charlie the best shot he can have and it scares me to think that some doctors might try to sell him short. It's just such a crapshoot what kind of doctor you're going to get. I'm so happy that the odds were in our favor on this one.


Thursday, April 10, 2008

Grumping

I'm grumping a bit about Charlie and his therapies. I get this way sometimes. . . I just feel like we're not making any progress. I know this isn't true, but sometimes his progress is so slow that it's hard for me to see. I feel like we're moving through quicksand.

The thing is, I hate when special needs mommies whine too much. Don't get me wrong, fighting with insurance companies sucks, and some people are horrible toward those with a disability. I just don't want to become one of those people who doesn't see the beauty in my child. Charlie is a neat, neat, neat kid. He's a hard worker and he has such a charming personality. No one deserves my time and energy more than he does. But I still get so worried--maybe he's going to stop progressing, maybe I'm not doing enough to help him, maybe there's nothing I can do. It's hard, but I know that being a parent is always hard. With Charlie I just worry about different things than most parents.

So, enough whining. Watch this video. Charlie invented this game, and he just loves it. It may look a little scary, but he can't get enough. Things are pretty good over here.

I'm sorry for those of you who can't see this!

Wednesday, April 9, 2008

Cat Napped?

What She Wore: Super-old t-shirt from Harry' T's; navy blue shorts; tennis shoes.

What She Ate: I'm back to the Lean Cuisine and soup regimen. For lunch, chicken noodle. For dinner I'm having ravioli.

Ok. It's been two weeks since my cat disappeared and I'm pretty sure he's not coming back. I'd like to share a few details, though.

Max is a wonderful cat--he's very friendly, loves to be petted, and lets you pick him up.

Max is a very good looking cat. There's something a little exotic about his face--the vets always comment on it.

A woman called me the day I put up my missing cat sign and told me that she had a gray cat in her backyard. I told her that I couldn't come that minute because I was an hour away and getting ready to eat lunch, but I would call her when I was back in the area. She told me she lived at the end of _______ street, which is only one block away.

Later, I called the woman and she wouldn't answer her phone.

I haven't spoken to her since.

Max is not at the humane society, and I've gotten no other calls about a gray cat.

I've seen no dead cats that look like Max and I see cats everywhere in my neighborhood, so I don't think there's a cat predator lurking in the bushes. Most of my neighbors let their cats roam free without incident.

I drove to the end of ______ street and there is a house with FOUR cat figurines in the front yard.

There's a mail box wrapper with a cat on it too.



Could Max have been cat-napped?

Could he be living blissfully with the cat lady, eating wet food and getting his ears scratched?

I think it's a distinct possibility.

Tuesday, April 8, 2008

Seriously Effing Disturbed

I was just prowling around on Facebook when I saw a group entitled Speak English or Get Out. Sadly, this group was founded by someone who attended LSU, but there were people like this is Arkansas too.

All I can say is this:

  1. Just because someone speaks Spanish, that doesn't mean that they can't speak English. My grandmother spoke three languages: Spanish, English, and French. My father speaks Spanish and English.
  2. What's the big deal about Spanish? I don't see people losing their minds when people start conversing in Vietnamese or Hindi or French.
  3. No one is talking about you. I hear this all the time, and all I can say is get the F over yourself. Just because someone is speaking another language, it doesn't mean that they're commenting on you shoes or whatever. You're not Brad Pitt or Katie Holmes--most people just don't care.

The saddest part was that this group had been joined by a lot of foreign nationals who were hoping to improve their English skills--they didn't get that the group was derogatory.

Fractured

What She Wore: Black v-neck tee; blue jeans; royal blue, suede-like flip-flops; royal blue plastic bracelet from Tar-gay. I'm having a bit of an obsession with plastic jewelry these days.

What She Ate: Spaghetti and meatballs from The Peppermill. For dinner I'm having some manner of Lean Cuisine.

My thoughts are all over the place these days, so this blog is going to be extremely random.

Charlie is going to be fitted for AFO's to help him with balance while he practices standing and walking. These aren't covered by insurance, but luckily the state will pay for things like this if we get it through their program. We're also going to get soft knee braces to help him keep his legs straight while he sleeps. With braces on his knees, ankles, and hand the kid is going to look like robot-man. Maybe we should just put him in a full body cast?

******

We had lunch with the old high school friend. We punted on the whole Charlie situation and said nothing. Charlie played with his keys through lunch and then fell asleep. Someone who is very astute might have noticed that he doesn't really look at people very much, but the friend was very distracted by his own little ones. He is doing well, and is very much the same guy he's always been--very smart and working way too hard. He seemed interested in rekindling the friendship, so the Hub sent him an e-mail about Charlie on Monday. He took it in stride and said he hadn't noticed a thing. Now I'm just stressing about the politics of him and the other friend. Charlie's birthday is less than two months away and I don't need any fist-fights breaking out.

*******

My mom came up with some prototypes for Charlie's birthday invitation. Here are some pictures. I'm going to go get some supplies tomorrow and start trying to get a final one done. I'm pretty sure we're going to go with the vertical card and the front is going to have something along the lines of "this little piggy went to market."





Gosh, I could go on and on like this, but I'll save some for tomorrow.

Saturday, April 5, 2008

I Wish

What She Wore: My faded Levis; a navy blue shirt with black trim; black, beaded, slip-on mules.

What She Ate: For lunch I had Chicken Parmesan and Caesar Salad from Copeland's Fire and Ice. For dinner I had tomato basil soup and Caesar salad from La Madeline. Later the Hub made homemade mint ice cream. A great eating day.


Well, I wish I had more to report, but I'm glad things are a calm these days.

I've been working in my vegetable garden--I've got sprouts of cucumber, green onion, corn, and maybe beans starting to show (I'm saying maybe because I can't quite remember if that's what I planted right there).

Charlie is back on track and working hard. I concentrated on keeping us on schedule and he's responded well.

I'm trying to introduce more solid food, but I'm still struggling with this. His OT watched him eat a fig newton and he's definitely got some of the right moves. He forgets to swallow every once and a while, but I'm not too worried--he figures it out in the end.

I've decided that we're definitely going to add some private physical therapy and maybe speech therapy as well. I have to see how much I can squeeze out of our insurance company.

The best news of all is something I forgot to mention in the hecticness of last week. Charlie has officially been dismissed by Nephrology. I don't talk about his kidneys much because I never worried about them too much. Between a mis-firing heart and a damaged brain, I couldn't spend too much time fussing over kidneys. Anyway, when Charlie was placed on life support (ECMO), he swelled up like a tomato. One of the side-effects of ECMO is kidney damage. We've been monitoring closely to make sure that his kidneys fully recovered. We had an ultrasound and everything looks perfectly normal, so now I can cross one doctor off our list. Hooray! Now Charlie only sees four doctors. It was six when we first left the hospital.

That's it. I wish is was more interesting, but sometimes life is calm and that is A-OK with me.

Thursday, April 3, 2008

Crazy Projects

What She Wore: Jeans, blue shirt with stripes of orange and turquoise, slip-on tennis shoes.

What She Ate: Chicken nuggets from McDonalds for lunch(I'm slipping big-time here); turkey and stuffing from Lean Cuisine for dinner.

Well, you guys know what my latest projects are: Charlie's birthday party, my vegetable garden, and my Halloween party. My veggie garden has some sprouts coming up, so that good. I've made minimal progress on Charlie's party other than deciding the theme. My mom and I are going to make the invitations and I have to talk my husband out of the idea he has about roasting an entire pig. Yuck! His friend even offered to try to borrow someone's pig roaster. For my son's first birthday I was thinking less scary, dead animals, and more a cute, farm theme. Call me crazy.

But, since I don't exactly have oodles to talk about, I'll tell you about a crazy project that I've been working on for a couple of years, and that I'm finally starting to see the end of.

I decided to read every interesting fiction author whose last name starts with A. This seemed simple enough when I thought it up. I was wandering around the fiction section and Barnes and Noble and had no idea how to choose between all the interesting books. I finally just decided to start at the beginning. My criteria were simple: read at least one book from every author that I'd heard of, and read any other books that looked interesting or important from a literary standpoint. I didn't have to re-read if I'd already read something, and I didn't have to go back if something was added later. I think I've read about 25 books, and I have about two and half books left.

I'm not sure what I'll do next--go on to B, maybe? Or something entirely different? Before that I was reading dystopias, which was also pretty interesting. If you're interested in the books from either of these projects, I've put them all in Mylibrary, so feel free to check it out.

***Someone asked me and I can't find it anymore, but I use a Kodak Easy Share Camera from the Z series. Z is for zoom. I've reasearched the fancy, professional cameras, but mine is easy to use and takes pretty good pictures, so I'm sticking with a point-and-shoot for now***

Wednesday, April 2, 2008

Teacher Teacher

What She Wore: I basically spent the whole day in my pajamas. I'm going to have to change so I can go to the grocery store.

What She Ate: Leftover pizza from last night.

Well, Charlie's appointment with his Special Instructor was today. The appointment was at 9 a.m. I didn't think this would be a big problem because Charlie's been getting up at around 8:15. Well, I stayed up late last night reading about momo twins (fascinating, by the way), twins that share the same sac. One of my MIL's co-workers had twins like this that didn't make it. But I digress! So, I overslept due to my late-night internet wanderings and got up at 8:45! I brushed my hair and teeth, went to the bathroom, and then the doorbell rang. She was ten minutes early. Sheesh.

So. . . we had the meeting while we were still in our pajamas.

She was impressed with all that Charlie can do--holding his bottle, transferring things from one hand to another, and sitting with little assistance.

She's worked with lots of visually impaired kids before so she had a bunch of great ideas for that.

Immediately we are going to be working on the following: getting some toys off the floor, so he'll be tempted to play with them sitting up, and explaining auditory clues to him, so he knows what's going on. An example of this would be janging keys and telling him that we're leaving the house.

She was very business-like and I think she's going to do a lot of great things for Charlie.

Let's see if I can be dressed by the time she shows up next week!

Below, a photo-montage of feeding Charlie:





Tuesday, April 1, 2008

A Little Peace

What She Wore: Royal blue, green, and white babydoll tee with a scoop neck; blue jeans; royal blue suede-like flip flops. I'm not usually a flip-flop person, but these are pretty comfortable.

What She Ate: My lovely father took me for enchiladas to help lift my spirits. That's my family--we throw food at our problems. I wasn't real hungry, though.

I'm starting to have a little peace with the whole cat thing. I've made my signs and I'm going to go look in a lady's backyard later and see if he's one of the cats hiding behind her house. Other than that. . . well, I can't do anything else.

Charlie got up last night at 11:30 pm. I decided to run him through a session of "exercises," and he did pretty well. I'm starting to suspect that he's over-tired. Maybe the stander is wearing him out too much to do his other work? I'll have to ask the therapists about that the next time we see them.

I've discovered a new addiction--Librarything.com You can catalogue your books online. You enter the books and any information you want--reviews, comments, when you read it, etc. You even get to select the cover that you have, which for some reason is very important to me. It's completely free for the first 200 titles and it's going to be a long time before I read 200 books. It's also got a really cute widget that I put up in my sidebar. I'm dork.

Anyway, tomorrow we meet our instructor for the first time. I'll let you know how that goes once it's over.

Ok, I know that some of you guys can't see videos, and I have some sort of problem because I filmed the whole thing sideways, BUT if you get past that you can see Charlie in his stander in action.





***Edited: the woman never called me back. She told me generally where she lived, but I guess she wasn't comfortable giving out her actual address. She said she saw a gray, striped cat behind her house that she'd never seen before. I don't know if I should be hopeful or what. I went up and down that street, but I didn't see any gray cats. Black and white cats, but no gray***