Thursday, January 31, 2008

Day Thirteen (of Twenty-Eight)

What She Wore: Grey t-shirt; blue jeans, tennis shoes. I really should make a little more effort, but it's raining outside and I didn't want to bother looking cute and then getting ruined.

What She Ate: This is embarassing. Enchiladas. Cheese, chicken, and beef this time from my favorite Mexican restaurant around here. The MIL nicely let the Hub and I escape for a dinner together.

Ok. I don't like to do Charlie posts back-to-back. I realize that there are some non-mommies who read this blog and sometimes you like to log on and read about something other than my kid's therapy. So, I started a really nice blog about a light fixture for my entryway. That entry started to become very long and then my husband came home and weighed in, and then we got out the tape measure, so for now, it's not finished.

I did, however, want to brag on my kid. I do not get tired of this. I am the internet equivelant of that annoying woman with 36 pictures in her wallet. You cannot escape the update.

Anyway, Charlie's OT came today and he did amazing! He is prop-sitting like a champ. If you had nuero-typical children (that's PC talk for normal), than you probably have no idea what prop-sitting is. If your kid has CP then you, like me, probably have a binder full of developmental milestones and prop-sitting is in it. My binder tells me that this is a five month skill. The doctors have told us that Charlie has lost AT LEAST two months of development between the drug-induced coma and the hydrocephalus. Plus, he's got CP which means every milestone is a battle. Well, he's not quite eight months old which means he's prop-sitting basically on-target for him. I could dance like I fool I'm so excited. I realize that other things may come later, but this is good news. He can hold the position for well over ten seconds, so now we're moving on to new skills. I couldn't be more thrilled.

Oh, and the bottle strike is over. After talking with his regular nuero, she decided that his meds were probably upsetting his stomach and ordered him some Zantac. Funny thing? My mom kept calling it Xanax. Now, if the kid had some Xanax--well, he'd have to share with mom, right?

OK, Blogger wouldn't let me Spellcheck or add a picture. I'll do both when it lets me.

Tuesday, January 29, 2008

Breaking Up is Hard to Do

What She Wore: Blue jeans, tennis shoes, periwinkle polo with a little yellow polo player. You can sneak purple and gold in all over the place.

What She Ate: Cheese and chicken enchiladas with my homemade red sauce. Yummy!

Finding the right doctor or therapist for your child is a lot like dating. You arrive early, you look nice, your hopes are high. Often times, you are disappointed. More often than not, I find doctors lacking. Some don't understand the nuances of your child's health--the worse ones aren't really interested. The best ones are great. You leave their presence feeling better. They are as hopeful as you are about your child. They feel like members of "Team Charlie" rather than cross-town rivals.

Sometimes, however, you get someone that you don't love. In some cases, you have a choice--you get a second opinion, you change courses of action, or you just don't go back.

I'm starting to think that I'm not wild about Charlie's Vision Therapist. I'd like start by saying that she is the consummate professional. She's perfectly on-time, she calls the night before to confirm, she gives me all paperwork typed, and she has a myriad of strategies.

I don't think she has a lot of faith in Charlie, though. The first day she came to work with Charlie she brought Braille materials and a special needs catalogue from Toys R Us. Right then and there I think I soured a little. I'm not opposed to Braille if that's what Charlie needs, but he's seven months old. He's not reading anything. Let's work on his vision for now, and when it comes time to read, we'll figure out which way is best for him.

Whenever she comes, she acts like Charlie is blind. She assumes the worst and that's exactly what she gets. She comes with bells and colorful toys, beads and flashlights, and he ignores the whole thing. I've had two different doctors--both specialists--tell me that he is definitely not blind. I've had other experts in children tell me that they think he has vision. The verdict seems to be that he's missing some of his vision field. This makes vision inconvenient, but present. Our job is to get him using his vision as best he can. So far, I've seen a vast improvement in the last four months. His vision is more centered and he makes more eye contact than before (as opposed to none, we have some). He still has a long way to go, but I see progress and so do others.

So, I'm left feeling like the girl who's always wanted to get married and have kids, who's well out of college, and who's dating a tool.

For now, she's one of the only Vision Therapists in the state. She's all we've got. I have to decide if her positive therapies out-weigh her negative vibes. Ahhh, the choices we parents have to make.

Sunday, January 27, 2008

Day Nine (of Twenty-Eight)

What She Wore: Brown, ribbed sweater with a keyhole neckline that has a little tortoise shell necklace at the top; flared blue jean skirt; knee-high brown leather boots. Mama got to leave the house and wear big-people clothes!

Well, the Hub and I did a marathon session working on our front room. It's supposed to be a formal dining room, but we've decided to use it as a library/study. Most of our entertaining is the mill-about/buffet-style dining, and people never just sit around the table. For that reason, we decided that for now we'll do without the formal dining room. The rest of the house is going to be a disaster until we get that room at least partially straight--a domino effect, if you will. Things in that room have been on hold for a couple of reasons. One, I painted it a shade of green that started to make me feel like I was living in a mint. Two, I decided to rid the ceiling of popcorn. I just finished the ceiling the other day, so it was time to tackle the room in earnest. Up above is what the room looked like when we toured the house before buying it. Here is a picture of the scraped ceiling and so-called "nipple light" (I am going to get so many hits from people googling nipple).

So, we went to Lowe's, painted the ceiling, went to Lowe's, finished painting the ceiling, opened a new light fixture, sent an ugly e-mail to the light fixture people, found the piece we were certain was missing, hung the light fixture, painted most of the room, and began painting the edges. I also started putting books in the bookcase because I've got boxes of books piling up all over the house.

Here's the light fixture we installed (by we I mean that I found that "missing" piece). The Hub found a formula on the Internet that tells you how big a fixture a room needs. We were amazed at how massive this thing was when it arrived in the mail. It hangs low too. So low, that people over six feet tall probably shouldn't come over. We're not sure if we're just going to put a piece of furniture under it, or if we're going to try to figure out some way to raise it. Our entire family is short, so it's not a huge deal, but you never know when one of the Hornets is going to come over (kidding).

We're not bothering to tape anything off because we're either painting or replacing the moldings. This makes things easier in some ways, and more difficult in others. My husband rocks at trimming without tape--alas, I suck. He'll have to finish that part of the job because I spend more time wiping up big globs of paint than actually doing anything with a brush. As you can see, we still have a million things to do in there, but we made major progress this weekend.

During all the hullabaloo a parade passed right in front of our house--it's a neat little town we live in.

Saturday, January 26, 2008

Day Eight (of Twenty-Eight)

What She Wore: Pink sweat pants; red t-shirt. We're working on the house today, so I'm in my grubbies.

So many nice people commented on Charlie's bottle strike that I thought I should give an update.

We called the on-call neuro, and he said that if he's taking solids than it probably isn't related to the medicine. Instead, it's more likely a developmental situation. He instructed us to mix his solids with lots of liquid and bring him to the ER if he shows signs of dehydration or a severe digestive problem (like black or bloody stool).

So, we've been eating tons of solid food, and it's a big hit! Chicken noodle actually gained smiles. We resorted to just squirting some medicine/formula down his throat and he swallows that just fine. I guess it's sucking he's opposed. As is usually the case with Charlie, he tell us what he wants and when he wants it.

Friday, January 25, 2008

Day Seven (of Twenty-Eight)

What She Wore: jeans; tennis shoes; gray LSU hoodie.

Well, we've survived exactly one week of house arrest. We do really exciting things like cruise the neighborhood in our stroller (no germy people around), ride in the car with no destination, kick our play mat, and tummy time. This is the life.

I'm kidding, but I haven't gone nuts yet, and that's a good sign.

Meanwhile, the strike continues. We are just B-A-R-E-L-Y getting enough liquids, so I did what any good mom with too much time on her hands and Internet access does--I googled Charlie's new medicine. One of the side-effects? Upset stomach. He's been really burpy (I'm not sure that's a word) too, so I've put in a call and maybe we'll be getting some zantac or something. While I wait, we've been experimenting with various cups.

I've taken to just squirting his medicine in his mouth. He doesn't really mind the taste--the pharmacy makes everything for kids taste like sugar and cherries. Not my favorite flavor, but way better than the actual taste.

Enjoy the weekend.

PS: After spell-checking this thing, I find that I like taking real words and tacking "y" or "ie" on the end to create made-up words. According to google, "burpy," "hoodie," and "germy" aren't words. You know what I meant, right?

Thursday, January 24, 2008

Day Six (of Twenty-Eight)

What She Wore: red pajama pants; light blue t-shirt; socks. I'm not going anywhere today and it's freezing, so I didn't bother changing this morning--classy, huh?

Charlie is on strike. He no longer wants anything to do with a bottle. Now, I've checked the internet and he's not the first baby to do this, but it's still a little unsettling. Four of his daily bottles are laced with medicine and right now we're having trouble getting them all down. I may have to concoct a new devious plan to drug my child [insert devilish wink]. The OT says that we need to move quickly to the cup, so he still gets his liquids. She wasn't too concerned, though, since his overall intake seems OK. I think the little prince just prefers having everything spoon fed. It's a tough life.

On a totally different topic, Target has put these really awesome (I'm a child of the 80s) stool/ottoman/tables on sale. They come in black and white and they're only thirty dollars. I can think of about a million places in my house where one of these babies could go. Now if only I could sneak out of the house for about an hour. . .

Wednesday, January 23, 2008

Day Five (of Twenty-Eight)

What She Wore: long-sleeve, ribbed tee, with a little V in the neckline; blue jeans; brown and white high heels with a poof on them. I'm not doing anything, so I might as well have good shoes, right? Well, I did check the mail.

Well, house arrest is still going OK. We did pay a visit to the neurologist who said that Charlie looks, "friggin' fabulous." Let me tell you, the language changed a lot when I moved down here from Arkansas. I never heard so many doctors cursing till I got back to the Crescent City. I don't mind.

I have also decided that online shopping can be the black hole of death. If you need a new rug for any part of your house, then do NOT go to this site: I think they have exactly one billion rugs on there. I have spent--no, wasted--two entire evenings on there. I enjoyed myself, though.

In other news, my very elderly grandfather is in the hospital with what looks like a stomach virus. It's taking all the power I have not to complain about what a draining year this has been. I actually thought to myself, "well, I hope they took him to O______ because their ER was great." I'm ranking ERs! Ok, looks like I slipped a little there. Generally, things are good. I'm going to stop complaining and go look at all of my cookbooks, which I recently rediscovered in a box.

Monday, January 21, 2008

Day Three (of Twenty-Eight)

What She Wore: blue jeans; tennis shoes; purple LSU sweat shirt; gray Hornets, long-sleeve tee. I am representin' Louisiana today (apparently).

Well, people have expressed a little interest in my house work, so I thought I'd share. So far, we've painted the main areas and scraped the ceiling in the front room. The last time I had a picture of the house up I showed the view from the front door. Now, I'll give you the same view with the new paint, furniture, etc.

I'll tell you a little bit about what you're seeing. The secretary (desk) belonged to my great-grandparents. It was a rickety piece of junk, but I couldn't bear to part with it because it has a sticker on the back from the company that made it. It's was a local New Orleans company that's now out-of-business. Luckily, it got destroyed during one of our moves and the Air Force paid to have it completely re-done. It's gorgeous now.

On top, there's a painting that I bought at a local art gallery. It's called Dance With Me I and was done by a painter named Jim Browning who's based around Nashville Tennessee. My husband and I really like art. Other people have electronics--we have art.

Also on top of the secretary is a statue called The Tree of Life which is carved out of ebony. My husband's family bought it when they traveled to Kenya when he was in grade school. There was a whole divorce/new wife doesn't like reminders of the new wife thing and many of the treasures from my husband's childhood were gathering dust in his father's attic. He reclaimed many of them and you'll see them scattered around our house.

On the bottom of the secretary you can see a gold bowl made and painted by a local artist. It was a gift to us when we got engaged from one of my dad's associates. He had good taste.

Next up for this area, I need to buy a rug for inside the front door. I'd also like a new light fixture. Right now, I'll have to make do with what I have, but I'd really like to replace this at some point.

Kind of blah, don't you think? For now, I'll have to satisfy my light fixture craving by going to a GREAT site.

Saturday, January 19, 2008

Day One (of Twenty-Eight)

What She Wore: black turtle neck; blue jeans with a dark wash; furry, tiger-striped vest; black leather booties with a little patent leather and a stilleto heel.

We decided to just go ahead and start the medicine for Charlie today--get it over with. Luckily, my MIL is able to baby-sit so I can go out to dinner for my brother's birthday. We're going to one of those Brazilian churrascarias--all you can eat meat, an incredible salad bar, and some other goodies. I've never been to this particular one, but the Hub and I used to go to Fogo de Chao in Dallas for special occasions.

Anyway, on his first day of incarceration Charlie looks pretty miserable, doesn't he?

Friday, January 18, 2008

Mind Dribble

What She Wore: long-sleeve green tee; my new Levis; brown, slip-on tennis shoes with white stripes on the sides; my brown, leather LSU purse. It's discreet enough that people don't notice immediate that it's LSU paraphernalia--not that I'm opposed to being as obnoxious as possible in my tiger love.

Here are some dribblings from the brain of a person who never seems to have enough sleep. I don't know if it's the baby or if I need to take some iron pills or what.

My dad sent me home with ten murder mystery DVDs--that should keep me busy for a while.

I've gotten a library card, but then I started wondering if library books would bring germs into the house--I may just end up buying stuff or maybe I should wipe them down with anti-bacterial wipes?

I am desperate to get my ceiling scraped. I may just do it tonight--stay up and scrape. Really, it doesn't take that long. I just get tired and quit. If I put half as much energy into this project as I did into scraping wallpaper I would have been done about a million years ago.

We are working at strengthening Charlie's neck muscles--time in the jumparoo and tummy time. Also, I've got his nursery mainly put together and it's nice to have a place to put all his crapola. The only problem is that I forgot to take down the rose-colored curtains that the last owner left. Pink curtains in a boys room! Poor guy.

Basically, more of the same.

Tuesday, January 15, 2008

Proof that God Wants Me to Blog More

What She Wore: striped pajama pants, blue t-shirt, bare feet.

Well, we got a call from Charlie's nuero today and things are not as good as we'd hoped. She is VERY concerned about his EEG results. She agrees with me that he looks great, but she's concerned that his seizures may affect future development.

So. . . she has prescribed some heavy-duty meds for ole Charlie. They will compromise his immune system which means he'll be on house-arrest for four weeks starting Sunday. Four weeks when I can't leave the house for ten hours a day (at least). Can we say "Mommy needs a drink now?"

Prayers are in order if you're the type--we need a good EEG and no illness while he's on the medication. He's come this far--why not a little more?

Monday, January 14, 2008


What She Wore: My Levis; short-sleeve tee; olive green hoodie with a fluer-de-lis design on it with gold studs; brown slip-tennis shoes with white stripes.

I just read this on another blog and it makes me absolutely sick. If you're not into clicking than let me sum in up for you: two boys killed a mentally disabled boy for sport. This was only after they'd spent weeks beating the crap out of him for alcohol and cigarette money.

This kind of stuff stikes fear in the heart of every parent of a child with a disability. I won't write Charlie's story for him--there's no evidence that he's not intact mentally, but it still scares the crap out of me. Really, we should all be scared when we read stuff like this.

Off to eat bannanas and oatmeal.

Saturday, January 12, 2008

Going So Quick

What She Wore: blue plaid pajama pants; LSU t-shirt; socks. It's almost midnight, OK?

How did it get to be almost Sunday already? I've been meaning to brag on my boy since Thursday night. Thursday Charlie's OT came to see him. With the holidays, it's been three weeks since she last saw him. She was SO impressed with all the strides he's made. We're not sitting independently, but it feels closer and closer. He was also laughing and giggling and making eye contact which is something he struggles with. She used the word AMAZING at least five times.

Of course, when things are going well, you start looking ahead to the next big goal. The next one is a toughie for me--eating solid food. I hate, hate, hate the whole business. It makes the diapers stink. When we're done he's got food all over his face, his chair, his bib--everywhere! And for what? The half-eating/half-dribbling thing seems pretty inefficient to me.

But, with kids like Charlie you can't take anything for granted. Many children with CP struggle with the move to solid food. They gag and choke and spit it back out. Luckily, Charlie doesn't seem to mind. Unfortunately, it is still a skill and skills have to be taught--we can't assume he'll just figure it out on his own. So. . . here's my goal for this week: I will try to feed him baby food at least once every day. I'm already dreading it. Great attitude, right?

Wednesday, January 9, 2008

Working It Out

What She Wore: blue jeans; long-sleeve gray LSU t-shirt; grey houndhooth mary-jane tennis shoes with two buckles. I swear I look nice some days--I just don't blog on them.

Well, I yesterday was a pretty scary entry. I apologize for that, but sometimes this stuff just comes up and I can't figure out how to broach it. Today was a better day. Charlie had apparently out-grown his dosage of anti-seizure meds. We're increasing over several days and I'm already seeing major improvement. Things were getting bad and I was scared out of my mind. Additionally, Charlie's occupational therapist put me in touch with a mother who's going through the exact same thing I am. She had twins born at twenty-nine weeks and one of them lost half of his brain matter to a bleed. He's got hydrocephalus, a shunt, seizures, cerebral palsy-the whole enchilada. Thing is, he's not doing too bad. The doctors told her that he'd never be able to suck a bottle much less have any sort of normal life. At almost two, he's saying a few words, crawling, learning to walk, and getting into fist-fights with his neurologically typical brother. Not half bad for a kid who wasn't supposed to be able to eat on his own.

I'm doing OK--I'm just a little shaken by the sudden develpment. We've been working on the house--painting is largely done and now I'm scraping a popcorn ceiling that I don't like. I've got tons of fabric that I hope will become curtains and I've got new knobs selected for the kitchen.

The celebrating never ends in the Crescent City and the Hub and I have been kept busy with LSU festivities and now we're gearing up for Mardi Gras. I'm not exactly sure when people rest around here.

And Charlie--well, Charlie is doing pretty freakin' great. Now that the seizure thing is getting under control he's been an absolute delight. He's laughing, smiling, vocalizing like mad, and is really interested in the world around him. Please don't stop praying or sending good vibes for my little miracle man. Uncontrolled seizures can be absolutely devastating. I get scared if I think about it for too long. I want to kick this latest development in the arse and get on with business as usual.

Tuesday, January 8, 2008

In Hiding

I'm just going to go ahead and spit this out because I can't hide any more. I've been avoiding the whole blog thing like the plague because I just don't want to deal with this. Charlie has begun having some very scary seizures. He never had seizures before and frankly, I'm scared to death of the things. We're upping his medications and that seems to be helping, but still. . . I am scared. It's hard for me to even put it all into words.

Sometimes I feel like we are never going to get a break.

Say prayer will ya?

Wednesday, January 2, 2008


What She Wore: Long sleeve, purple and gold LSU tee; my old faded Levis; slip-on tennis shoes.

I've been a bad blogger. I haven't touched the computer in over a week. I have a really good excuse, though--I don't have internet access at my house yet. Hopefully, I'll have it set up by the weekend. In the meantime, I've been getting a lot done, eating more than I should, reading books, and watching movies. Oh the things you'll do when you don't have internet or cable.

I guess I'll update quickly: Christmas was stressful. Too much driving/doing/seeing and not enough relaxing and enjoying the family. New Year's Eve was random and I enjoyed the free, premium liquor just enough to make me sleep like a rock. My husband got in touch with his inner child and scared an entire party full of fancy-pants real estate types. Luckily, the host thought we were all really cool. He must have had more of the premium drinks than I did.

New Year's day was lovely. The Hub made corn beef with potatoes and carrots. I made cowboy caviar and my MIL made sauted cabbage and a pecan pie. We feasted while family and friends paraded in and out all day. The house is still a wreck, but that doesn't keep us from inviting people over.

I hope everyone's New Year was as lovely as mine. I'll be blog-hopping as soon as I get the chance!