Holiday Rant

What She Wore: Black capris; black tee; gray, cable-knit, hooded sweater with a zipper; black and gray herringbone mary janes with two little straps.

Tis the season for a little ranting, right? Today I am trying to address Christmas cards. I like to send the photo kind of card--mainly because that is my favorite kind to receive. I love seeing how everyone is doing and growing. Here's the thing--I like sending CHRISTMAS cards. My card this year reads "Christmas 2007." As if we've all just graduated from the event. I hate that. I went to several sites and all the card I found said "happy holidays" or some other crap. Seriously, is it that hard to offer the option of a Christmas card? I know that not everyone celebrates Christmas--I'm not an idiot--but why can't I get any choices? The research I did shows me that there are about 150 million Christians living in the US. Surely I'm not the only one who wants to send a cute photo card. I've looked over the cards my Mother-in-law has recieved this year. A couple of them are religious is nature--they're also heinously ugly. Glitter, woodland creatures, and other business. Seriously, is being a Christian just un-hip and out-dated? Christmas is about celebrating a miracle and celebrating the reason for faith. Can it be that hard to make a card that says, "Merry Christmas?"

Personally, I think that most of us have just dropped the ball. We don't even notice that cards don't say Merry Christmas. We think that Happy Holidays is a synonym. For a lot of years it was OK with me. But this year is different. I'm celebrating my own miracle--my faith. I needed more than "Christmas 2007." Nothing out there could adequately capture the joy, the amazement, the revelation that this year has been. It's a shame.

End rant. Feel free to move about the cabin.

Life is Good

What She Wore: grey LSU long-sleeve tee; blue jeans; slip-on tennis shoes.

When we moved into our "new-to-you" house we had the heater replaced. It was putting out "greater than recommended" amounts of carbon monoxide. Now, the last thing you want to do is poison your family while they sleep, so we went ahead and got a new one before we officially moved in.

Wouldn't you know that the dang thing would stop working this weekend? Just in time for one of the few times this year when the temperature will dip below freezing. We've only been in the house about five days. We don't want to pay for a weekend service call, so we're back at my Mother-in-law's until Monday.

Even so, I'm feeling pretty darn good these days. Our follow-up with the nuerosurgeon was on Friday and the news was better than good. Not only are Charlie's ventricles shrinking (thank you, shunt), but his brain is expanding into the new space. This is basically the best news you can hope for when your kid has functional equipment lodged in their skull. But that's just my opinion. To top it all off, he's using his eyes to look on his bad side, his weight gain is steady, and he's looking more and more like a real-live boy all the time. I'll admit it--I'm thrilled. I could not have asked for a better Christmas present.

I realize that my view of my child is skewed--he looks in both directions!!! He reaches for toys!!! He can hold a sit for a few seconds!!! He will tolerate solid foods!!!--but that's OK with me. Every step forward fills me with awe.

What She Wore: blue jeans; slip-on tennis shoes; a grey t-shirt that says, "Diet Coke."

It has been a crazy week. All my weeks seem crazy these days. Monday, we did a little stint at the emergency room--Charlie was acting funky, so we went in for a CT scan. Everything's great--shunt is looking good and ventricles are smaller. Tuesday I had my mother-in-law over to eat in a house that doesn't even have a place to sit. No matter, I made this divine salad with bacon, green beans, tomatoes, and Parmesan cheese. Super yummy. Yesterday I had lunch with my mom and went shopping to buy Charlie some clothes that fit. The kid is growing like a weed. Last night was the office Christmas party for the Hub.

It's crazy around here.

Next on the agenda, get my Christmas decorations up before I miss the holiday completely, pray that my Christmas cards get here on time, and make some of my all-day, way-to-complicated Mexican lasagna.

I promise a real blog entry sometime soon. Meanwhile, I'll just leave you with a picture of my favorite cutie.

Happy News

What She Wore: my new Levis; a Saints tee; tennis shoes.

Things have been really good around here. My mom is doing great--she's already making my dad drive her around on errands. Charlie is also doing really well. A while back, the physiatrist told us that there are very few absolutes in the development of a child with a brain injury. Most parents, however, really want to know if their child will eventually walk. Apparently there's a school of thought on this: if your child can sit independently by the age of two, they will probably walk. If your child does not sit independently by the age of four, they probably will not.

Needless to say, we went a little crazy with the sitting practice. When his OT came on Thursday she commented on how much stronger he is. She thinks his sitting is coming along nicely. He still flops over when he loses control of his head, but he can hold a sit for at least a few seconds. Hopefully, will just continue to improve. Also, the OT thinks he's got so much potential that she's going to start asking around to see if any of the PTs she knows would be willing to work with him. Right now PT is booked solid, so the only way we could get someone is if they went out of their way to do it. So, yay! Maybe a PT and definitely some progress. We are moving right along.

And, it's Christmas time, so we went ahead and took some pictures for our card. This one is the silliest, but it's also one of my favorites.

Little Moments

What She Wore: Two-tone purple striped tee with three-quarter length sleeves and a scoop neck; blue jeans; tennis shoes.

Well, we took my mom home today. Without pain medicine, she's basically her old self. She's got an incision running straight down the middle of her chest with a little T at the bottom of it. Everything is tough and she can't lift, push or pull. As soon as she got home she wanted a shower. I stood guard while she did it and then helped her get dressed.

Afterwards, she wanted me to blow-dry her hair. Anyone who knows me will know that this is a dangerous proposition. I've got a curly mop from Hades that I've never been able to do anything with. Most days, fixing my hair consists of washing it. On rare occasions I'll blow dry it, but even then there's a lot of curl and if I'm being honest, a fair amount of frizz. All through high school my mother would patiently dry my hair straight on Friday nights so I could go out with a perfect "do." Once I hit college I realized that I sucked too much to have anything but curly hair. So, I was a little nervous about doing anything for my mom in this arena. She said she didn't care what it looked like--she just wanted it dry. So, I went ahead and brushed and blow-dryed it. I don't think I've ever done something like that before in my life. I am literally hair-impaired.

It was nice. Taking care of someone else for little bit, making things slightly better than they were. A pleasant little moment stuck in the middle of a normal day.

Recovery

What She Wore: a new pair of Levis; red and white waffle weave henley; a strange pair of keds that caught my eye--red with pointy toes and a black and white bow. Really, I can't tell if the stripes are navy or black, but I'm not sure it matters.

My mother is well on her way to getting out of the hospital. She had to stay in ICU a little longer than expected due to some fluid build-up in her lung, but otherwise things have gone well.

The recovery has, however, made my mother really really loopy. So loopy, in fact, that when I go to visit her I have to hide a smile. She's not on morphine or anything, so I can't figure out why she's so looped. She can't keep the names right in stories and she doesn't know what day it is. She tells stories that don't make any sense. I can't imagine what the people who call her are thinking. Really, I'm enjoying it. My mother is pretty serious and this is an interesting change of pace.

In Charlie news, he is doing great. I know he's not progressing like other kids, but he does keep progressing. He's now consistantly swatting at things over his head--even if they don't make noise. He even grabs them and gets them in his mouth pretty regularly too. The stretches have really helped his tight hamstrings and we're working on sitting up! I won't say that everything is perfect, but I've seen so much growth. Go Charlie!

Yawn

What She Wore: old grey t-shirt; blue jean capris; brown strappy sandals. It is WAY too hot to be December.

Well, the Hub drew a line in the sand. He wanted to be moved into the new house by today. More specifically, he wanted to sleep in our new house tonight. Well, no such luck. We've got way more crap than will ever fit in this house. We are going to be having a free sale soon. Ever had a free sale? Basically, you get out all the stuff you don't want and invite your friends and family over to browse. When they leave, you pack the rest of it up and bring it to Goodwill.

I've also said that I'm not moving until he gets the cable and the internet set up. Do you know how boring it is to be a stay-at-home mom with no internet or TV? I'd go bonkers in the first three hours.

So, basically, it's kind of boring around here. Unpacking, getting ready for Christmas and the like.

Day Thirty

What She Wore: grey t-shirt from a school where I used to teach; blue jeans; tennis shoes. Motherhood is SO glamorous.

I'll be brief today. My mother had open-heart surgery and I'm off to see her in the hospital. I'll just ask a little question. My uncle wants to go see the medium/masseuse. He wants to know if any dead people will appear while he's on the table. We all took bets as to which dead person might show up. How about you? If you went to the medium/masseuse, is there someone you think might show up? I like to think my grandma might pay me a visit, but who knows. . .

Day Twenty-Nine

What She Wore: purple rugby shirt that I stole from my husband; blue jeans; tennis shoes.

I keep going to our new house and opening boxes. Notice, I said opening--not unpacking. I get the thing open and I think, "why the hell do I own this crap?" Box after box, I'm wondering why I have so much stuff.

I've found some fun items--love letters I sent my husband years ago, post cards I sent from Europe, a pep-talk I wrote when the Hub lost his pilot's slot, a list of things to have accomplished by 2007/2008. That last one is hilarious. Those things are little treasures.

By and large, however, I'm finding crap. After four months of stepping over piles of stuff to get around, I'm longing for some wide-open space. I need some breathing room, and this house is even smaller than our last. I open a box, take out a few things, and deem the rest to be junk. I'm feeling a serious purge/garage sale coming on. Starting fresh before my old ways force me to keep all this stuff: books I don't read, shoes I don't wear, dishes I don't use. What's the point in hording all this business? Who knows. I do know that I've lived four months without most of it, and there's no time like the present to get cleaned out.

Day Twenty-Eight

What She Wore: bright green long-sleeve tee; blue jeans with sparkles on the pocket; tennis shoes.

Ok, I'd like to act like yesterday's post never happened--major blonde moment there! Oh well, I'll probably recover.

I feel like my life is moving in fast-forward, and this posting every day thing doesn't help. I would like to share something today, though. You know how some bloggers are kind of famous? You know the ones that a lot of people read? Well, Billie is one of those bloggers. She had two twins born extremely premature. She documented their NICU stay on her blog and their subsequent growth. They are now three years old (I think). Both of her daughters developed cerebral palsy as a result of brain bleeds. One has mild CP and the other moderate. I found her blog not long after Charlie was born and I check it regularly. It's filled with detailed information about the girls, their issues, their doctors, their therapies, etc. I consider it a major resource.

Recently, Billie was asked by another super-blogger to participate in a round-table discussion about grief. She had not, however, experienced a literal death. Her grief is not unlike mine--she grieves for the children that might have been--the children with perfect health. I'm not going to talk about that again, though--at least not today. I'm just going to comment on one little thing.

Many of the people who talked about grief mentioned a certain phrase that they hate hearing: Everything happens for a reason. I feel compelled to comment on this phrase--I've used it and heard it, and I think it bears a little examining. Why would someone hate this phrase so much? I think, because it places blame in a round-about way. If everything happens for a reason, does that mean that someone is to blame for what happened to my child? Or to Billie's? What about the little girl who died while Charlie was in hospital? What was the reason for that tragedy? I think the word "reason" over-simplifies things. I think that people mean to say that we can't explain God's ways, but the way it's phrased doesn't make sense. Is God trying to teach someone a lesson? Me? My child? I just don't think God works that way; I don't think God is in the business of standing on a cloud, orchestrating "lessons" for each of us. I prefer to think of the whole thing as bigger than that--beyond my comprehension. I like to think of it as those pictures people make in stadiums--where each person is holding up a card of a different color. Mine may be white and Charlie's may be blue. I don't know why we each got the color that we did, but I know that it all makes sense from up above (lets just hope it's not like this).

I think my husband puts it in a way that makes a little more sense to me. Charlie is perfect. He is just the way God intended for his purposes--not anyone else's. Perfect. Doesn't get much better than that, does it?

Day Twenty-Seven

What She Wore: LSU rugby shirt; faded Levis; tennis shoes.

Sometimes people are just completely wonderful. You just never know where the next blessing is going to come from.

My mother and father both get messages from the same lady. She's also a medium--completely random, I know. The masseuse/medium. She'll see dead people while she's messaging. I don't see NBC making it into a show anytime soon, but it is interesting. Anyway, my mother has been telling her all about Charlie ever since he was born. This week she offered to message Charlie twice a month for free! She says that she just wants to do her part. The doctor has Ok'd it, so baby Charlie will now be getting a message twice a month. By January he'll have had more messages than I have in my entire life.

Wonderfulness can come from the most unexpected places.

Day Twenty-Six

What She Wore: faded Levis; grey t-shirt; tennis shoes; Tulane sweatshirt. I borrowed the sweatshirt from my dad and I got more crap for that thing--got to get one of my LSU ones out of a box quick!

Well, I'm in box heaven now. It took the movers four hours. The police ended up blocking off the street since I live on one of the busy streets in my small town. I'm like a movie star or something--gotta have a police escort to move in!

I've got about five thousand ideas for sprucing up the place, but I'm going to have to get some focus--which project do I want to do first? The budget is tight since I'm not earning any money right now, so I've got to think smart. What to do first?

I know some people have asked for pictures and as soon as I get a new battery for my camera I'll put some up. Sorry I'm writing so little these days--this blogging every day thing is tough when you're moving.

Day Twenty-Five

What She Wore: Blue t-shirt; blue plaid pajama pants; tennis shoes. More work.

Ding Dong the witch is dead. Errr, I mean, the border is down.

Movers come tomorrow. Must rest.

Day Twenty-Four

What She Wore: Blue plaid pajama pants; blue t-shirt; tennis shoes. Working clothes.



I spent all day working at my new house, and I'd like to introduce you to my mortal enemy:



THE BORDER THAT WOULDN'T DIE!!!!





I spent eight hours and I'm a little over half-done. Looks like this is going to be a long-term project.

Those aren't my knick knacks, by the way. This is a picture I took when we first looked at the house--the place is a complete wreck right now.

Day Twenty-Three

What She Wore: Blue plaid pajama pants; white t-shirt; bare feet. I've been napping and reading all day while my dear husband watches the baby. I'm going to have to get dressed now though--we've got to find something to eat.

My mother loves people of all kinds. She relishes every detail about people that she's never met. It was with great interest that she told me about a little baby that was born right around the same time as Charlie. This little baby has spina bifida--this is a severe condition in which a baby is born without a complete spinal cord. The baby is often paralyzed and most have hydrocephalus. My mother didn't actually know the couple who had the baby--she heard about it all from her hairdresser. Still, she was very interested in this little boy.

This past week my mother got to meet the little baby's grandmother, who gets her hair cut at the same place as mom. They talked about their grandbabies, their shunts, their surgeries. Then, the other grandmother relayed a story to my mother that just horrified me.

Spina bifida is usually diagnosed in utero, so the couple knew before he was born that their child would have a lot of issues. They were interviewing pediatricians trying to find someone who could help them with their child. Upon calling one doctor and asking if she handled any children with spina bifida the doctor replied, "No, I don't have any of those. Everyone I know who had a child like that had an abortion."

Can you believe that? A write-off and a moral judgement in just two sentences. Any person who refers to children with disabilities as "those" should be sent to a sensitivity workshop or twelve. Children with disabilities are still children and still need medical care.

Luckily, the family found a fabulous pediatrician for their baby--one whose sister has spina bifida. In the mean time, I'm glad I'm a great believer in karma.

Day Twenty-Two

What She Wore: Black and white, A-line, houndshooth skirt with an exaggerated pattern; black tee with short sleeves; black strappy sandals. I'd rather have had different shoes, but I needed something comfy because I spent all day in the kitchen!

One super-cute baby ensemble for his first Thanksgiving: $45

Turkey, ham, and trimmings for thirteen: $200

One ridiculously huge pimple recorded for posterity: priceless.

Hope your holiday was fabulous.

Day Twenty-One

What She Wore: wide-leg blue jean capris; green T-shirt that reads, "Teens Make a Difference Day;" black strappy sandals. I found those sneaky bastards--somebody put them where they belong and I couldn't find them.

I'm at my parents house in the middle of pre-Thanksgiving prep. Basically, I do whatever the Hub tells me and he does everything else. Big dinnner tomorrow--we're cooking for thirteen!

Other than that, it was another exciting day of peeling wall paper and a mega-sized nap.

Wish things were more exciting, but it's the day before Thaknsgiving--there's only so much you can say.

Day Twenty

What She Wore: Ratty blue tee, blue jean capris, funny red canvas shoes with a peep-toe and a bow. Workin' clothes!

Spent more time today peeling wallpaper--I should take a "during" picture to show the gigantic mess that I'm making. I'm making some discoveries about my little son as well.

When objects dangle in front of Charlie he waves his arms around, but doesn't make very much contact. He sort of looks like a deranged cheerleader. I was starting to wonder if he was trying to get them or if I was just imagining it.

Well, I shouldn't doubt the little guy.

The Vision Therapist taught us how to set up stations that made using vision easy. Basically, we hang brightly colored things VERY close, so he has a chance to reach them. My mother-in-law is a pro at this kind of stuff, so she bought one of those jingle bell things that people hang on their door knobs during the holidays. She suspended it from the kitchen counter and placed Charlie in his chair very close.

He starts waving his little arms.

Again and again.

Then, he made contact!

And again!

I got a view of his personality--determined. He will try and try until he hits that jingle bell and exibits far more patience than I could ever muster.

He may have challenges ahead of him, but I have no doubt that it's that determination that's gotten him this far.

Day Nineteen

What She Wore: blue jeans, grey, blousy shirt with silver dots all over it; black strappy wedges (not the usual sandals). Actually, I seem to have lost my ubiquitous sandals--is it possible someone hid them?



Well, I don't have much to report. I paid our utility deposits at town hall which is an adorable little building. I spent a nice chunk of the day peeling wall paper in the hallway of my new house. Since I'm laboring under the mistaken belief that people who read this blog are interested in my home decor, I'm including a "before" picture. Hopefully, coming soon will be an "after." Don't tell me if you think it looked better in the first place--I'm not interested in the truth.

Day Eighteen

What She Wore: black capris; sleeveless purple shirt with a cowl neck; black strappy sandals.

Yesterday the Hub and I went and visited our new home with one of his oldest friends who just happens to be contractor. We walked all around, looking in closets, discussing the possibilities, talking about where the furniture would go. The man who owned the house before was seventy-eight and had retired there with his wife eighteen years ago. She passed away several years earlier, and he was moving to a condo to be closer to his children. He was the neighborhood handyman and kept the house in excellent condition. He left a bunch of stuff when he moved out too--mirrors, decorative items, cleaning supplies, trash cans--little clues to the person he was and the life he lived.

While digging through the cabinets I found two bottles of scotch and a bottle of Jack Daniels. They were clearly very old--they had tax stickers on them that none of us had ever seen. We also found one small shot glass. So, we cleaned the shot glass (thanks for the cleaning supplies!), filled it up with Cutty Sark, and said a little toast: To us. To our new life in our new home and to the man who kept and cared for this home for so long.

It was a good moment.

Day Seventeen

What She Wore: black, draw-string capris; white tee that reads, "San Francisco, California"; I don't know what shoes, but I can bet I'll end up wearing those stupid black strappy sandals again.

I don't have much to say, so I'll answer a question that Antonella asked. She asked if the stretches we do with Charlie will reduce his tightness. It's a good question. For the most part, the stretches are to try to prevent further tightness. Right now, I am seeing some reduction in the tightness, but I think that's mainly since we've never really stretched him much before. Unfortunately, as Charlie gets older, and grows, those hamstrings will likely get tighter and tighter. That's why an oral muscle relaxer will probably come into play or maybe a shot of botox when he gets older. Many kids with cerebral palsy are "toe-walkers," and it takes braces and/or physical therapy to get them to walk correctly.

At this time, we are very fortunate--our main issue is hamstrings. There is some extremely mild involvement in his groin and triceps. So little, however, that the doctor doesn't even think stretching is needed. As for what the future holds, who knows, but we try to stay hopeful. Doctor after doctor have commented on how good he looks, and I can't help but think that that's worth something.

Day Sixteen

What She Wore: Running pants, a thousand-year-old t-shirt from Stonehenge. Don't judge me--I had a rough night.

How freaking embarassing is this?

Last night, Charlie cried for three straight hours. Not just crying--blood-curdling screams. He would briefly fall asleep and then would wake up screaming his head off again. This is not at all like him, and we have a lot of body systems (heart, brain) to worry about, so after a couple of hours I started to get a little nervous. My mom decides to call the pediatrician. The only problem? I'm at her house, and we don't have the number. So, she calls information, and gets a number. She dials. IT WAS HIS HOUSE PHONE. We woke up the doctor at eleven-thirty at night because we had a screaming baby. He was so out of it he didn't even know which baby we were talking about, and I've seen him twice this week.

In my mom's defense, she specifically asked the operator if this was a listed number. We were just trying to get an answering service or the on-call doc--not wake the poor guy up.

How am I ever supposed to go back to this guy?

Day Fifteen

What She Wore: chocolate brown turtleneck, khaki pants, tennis shoes. I have a wonderful outfit for later: black and white houndshooth skirt, black v-neck sweater, the really cool black retro pumps. Hooray for adult clothes!

Nadine tagged me a few days ago, and somehow that slipped my mind, so today I'm going to ahead and do it. The tag is for me to share eight random facts/habits about myself. My whole life seems random these days, so I don't think it will be too hard.

Here are eight random things I'm thinking about that have nothing to do with Charlie

1. My mom is having open-heart surgery at the end of the month. She can't drive for five weeks after that. Any guesses what I'll be doing the month of December?
2. My birthday is next week, and I'm inching dangerously close to thirty--ack!
3. My husband, who's a really nice guy, will only buy me a gift if I pick it out and show it to him. I haven't picked anything out for my birthday, so I guess I'm not getting anything if I don't get a move on.
4. Tonight I'm working at a benefit/silent auction at a place called the Savvy Gourmet. I'm glad I'm going to be working because otherwise I'd be eating WAY too much.
5. Tomorrow I'm going to talk to a group of elementary school teachers about how to identify students with dyslexia, and try to remediate them. It will be nice to be in the school setting for a little bit.
6. My dad has "hired" me to decorate a condo he's purchased and wants to rent furnished. Spending someone else's money on decorating? Sounds like serious fun to me.
7. I've finally started exercising. I'm just walking, but something is better than nothing.
8. I haven't done one thing about getting registered for that art class. Better get a move on!

In Charlie related news: the stomach illness continues, and today I had the privilege of delivering a cup of baby poop to the doctor's office. Say it with me people, "Ewwwwww."

Day Fourteen

What She Wore: Yellow polo with purple stripes, blue jean capris, those damn strappy black sandals. I can't wait till tomorrow because I know I'll be wearing some different shoes!

Well, I guess God doesn't like to let you wallow for too long. Today, we had a wonderful appointment with an opthamologist. As I've mentioned here often, Charlie has lousy vision. I went to a very fancy doctor--a nuero-opthamologist, and she left me with more questions than answers, and wanted to order a battery of tests that I wasn't really interested in. So, my dad met a pediatric opthamologist on the tennis courts, and we decided to go talk to him, and see what he said.

Basically, the news was all good--even better than I hoped. He sees no problems with Charlie's optic nerve, and doesn't think that there's any problem with his eyes getting the message to his optic cortex. He has, however, experienced vision loss on one side due to the hemmorage in his brain. Like this:

He does not feel that this is a big deal, though. He thinks Charlie can see and focus, and shows none of the warning signs of a person with low vision. He sees no need for surgery or patching at this time, and just wants to see how Charlie's vision develops naturally. He said that there's no promise of perfect vision (I was SO past that dream), but he considers things "promising." This is coming from a person who has developed a repuation as someone who can estimate "visual prognosis." So, I'm pleased.

On top of that, Charlie has now rolled from his stomach to his back twice. I'm not sure he could do it again, but it's a good sign that he can do it at all.

Take that!

Day Thirteen

What She Wore: Blue jean capris; black and gold striped tee with a square neckline; those damn black strappy sandals.



If I were giving today a subtitle it would be: words people don't like. You see, there are words that make people cringe--make them turn away or shut down. For many, cerebral palsy is one of those words.



You see, Charlie has cerebral palsy. They told us in the hospital when we deciding whether or not to keep him on life support, that he would have it. They said he could be in a wheelchair. They also told us that he might be retarded. Wow, those are two more words that most people wouldn't want to hear.



In the hospital, when choosing between that and no baby at all, it was an easy decision--I wanted my baby. Now that I'm home, it's hard to see him poked and prodded, labelled and diagnosed. Today we got our official diagnosis: spastic quadriparesis, and truthfully, it fills me with tears. It's a diagnosis that comes with a lot of baggage--having all four limbs affected means a much greater chance of mental impairment. It's kind of funny because in the hospital mental impairment was the least of my worries. I spent the last few years working with kids of all different IQ's and I knew that with the right direction a kid with a low IQ could still work, have a family, and be a part of society. Now, I'm scared to death.



The degree to which his muscles have been affected still seems mild at this point: tight hamstrings. Right now, we'll give him lots of stretches and splints on his knees for when he sleeps at night to keep him from curling up too much. Later on, the doctor predicts an oral muscle relaxer. Cognitively, he seems OK at this point, but babies aren't expected to do much. I'm trying to take it one day at a time, but today that's a little hard. I'll try listing some positives:



He eats great! We've moved up on the weight chart.

We finally made the height chart (gosh darn short genes)

Doctor thinks his neck strength looks good.

He's reaching for his toys although he doesn't make contact most of the time.

His legs are strong and he stands pretty well if you hold his hands.

He makes his own noises, smiles, and laughs.

He's putting things in his mouth.

He's using his vision more and more.



That's all I've got.



PS: If any of you are so inclined, googling cerebral palsy is a pretty mixed bag--there's a lot of misinformation out there. Feel free to ask me a question if you have one--I'm pretty up-to-date on my research.

Day Twelve

What She Wore: Gray running pants, blue t-shirt with a flower pattern, tennis shoes.

The baby has the stomach flu.

[Please insert a disgusting story about baby poop here.]

Today was supposed to be a well-visit, but instead it became a sick visit. Our pediatrician is also Charlie's special needs doc, and he seemed pretty pleased with how Charlie is doing. For those of you who don't know, the most common reaction to brain injury is physical--imagine someone you know who's had a stroke. Now imagine that happening to a baby. Overall, Charlie is stiff, but not too stiff. We'll know more as he gets older.

I've also begun plotting to start fixing up my new home. I'm lucky in that the old owner kept it in wonderful shape. It is still almost twenty years old, though, so I'm going to working on cosmetic stuff. First, I'm going to peel wallpaper, and then paint. I like a colorful home. After that, I don't know. All the trim is wood and I prefer white, so I suspect that will end up somewhere on the list. Ahhhh. . . the joys of homeownership.

Day Eleven

What She Wore: Pajamas. According to the clock on this computer it's a little after five. I should be sleeping, but I can't, so I'm blogging--makes perfect sense, right?

You know that feeling you got in high school when your boyfriend broke up with you? A rock in your stomach that is a combination of dread and nausea? Well, I've got it right now. No, I'm not getting divorced. I just found out that Charlie's neurosurgeon has left the hospital where he works. No official word yet, but the guy was kind of a maniac, and anything is possible with him. You don't want just anybody drilling holes into your baby's head, and I trusted this guy, AND he was smart, AND optimistic. There are a lot of doctors out there who aren't optimistic, and I've promised myself that I won't go back to any doctor who doesn't give me a warm fuzzy feeling. Problem is, not too many neurosurgeons in this neck of the woods. Well, crap--I'll just keep my fingers crossed that I won't need the services of a neurosurgeon any time soon.

PS: I just spell-checked this thing and apparently I can't spell nuerosurgeon or optimistic. Thanks, Blogger.

Day Ten

What She Wore: Jean capris; purple LSU t-shirt (Happy Homecoming); black, strappy sandals.

A while back someone asked how Charlie got his name. I'm a name nerd, so I thought today would be a great time to share.

My husband had only one requirement for our child's name: he wanted it to have family significance. You'd think this would be easy, but my husband is uber-cajun, and his family tree is filled with names like Aristeed and Clothilde. I wasn't really ready to go there. Also, our last name is quite French, and I didn't want anything that would clash too much with it.

I had my own ideas. I didn't want anything too popular, and one of my top-picks has become kind of trendy lately, so it became Charlie's middle name. Honestly, Charlie's becoming quite a hit these days as well, but I didn't know it at the time. I really like old-man names like Sam and Max, so I wanted something like that. So, I picked Charles off the family tree, and gave it an old-man nickname. If he wants to be Charles when he's older, then he's got the option. I also liked that St. Charles Avenue is a famous street in New Orleans--the New Orleans connection is a bonus for me.

So, that's how we got his name. We had a backup name as well that fit all the criteria--French, classic, family significance, old-man nickname, and it also has that New Orleans bonus. Anybody want to guess what we picked?

PS: If you're a closet nerd junkie like me then you owe it to yourself to check out what I consider to be the name mecca--The Baby Name Wizard. It's all good: the Name Voyager, the blog, and the book.

Day Nine

What She Wore: blue jeans; navy blue shirt with black velvet trim, pin-tucking, and a sort-of v-neck collar; black strappy sandals--I should just go out and bury those shoes so I stop wearing them so much.

I completely forgot that I'm supposed to be blogging every day. I'm not even sure what to write.

Today I was discussing a number of things with a friend of mine, and I realized that I am just too prideful. I don't even think I realized it. I don't mind apologizing if I know I've been wrong, but there's a lot of gray out there. Sometimes, you should apologize just because someone else THINKS you've done something wrong. Just to clear the air. I might be in that situation right now. I feel like I've done everything I can to be supportive of a friend of mine, but through the grapevine I'm hearing that she doesn't really think that I have been. Maybe something I said got taken the wrong way--I don't know. So here I am, I know there's a problem, and I'm avoiding it. My pride keeps me from calling or e-mailing, and just saying "I'm sorry." Mainly, because I feel I've done the best I can, and I hate apologizing for doing my best.

Sorry for being so weird and vague--I really wasn't planning on posting at all. I completely forgot, so this is what you get.

Day Eight

What Whe Wore: grey t-shirt; blue jean capris; black strappy sandals.

First, let me just get it out of the way and say: I LOVE Britney Spear's new song "Piece of Me." Is there are support group for people like me or what? It's in my head, I'm groovin' to it in my car. I can't be alone.

Well, day after day of entries seems to result in a lot of crappy entries--stacked end to end. Today was a monster of day. First, Charlie's Occupational Therapist came to the house. It's the first time she's been by, and I absolutely loved the way she jumped right in, showing me different things I could do with him. I think she liked Charlie because she decided that she wants to come every week instead of every other. We'd wanted someone to come every week, but no one had been willing. That's my boy--charming the pants off the ladies!

Then, I had to drive all over creation getting a certified check for our closing tomorrow. Yes, you heard that right--we close on the house tomorrow. We're not officially moving in until the end of the month, though. I'm taking Thanksgiving week to peel wall paper, paint, and get new carpet installed. My mother-in-law is off all week, so she'll be able to help with the baby.

That's it. I'm busy. I bet everybody is--it's just that time of year.

PS: I wanted to say thanks to everyone's nice comments yesterday. I talked to my MIL law about it, and she told me the funiest story. When my husband was a little baby, another mother asked her if he was retarded--he was that laid back. My husband is an engineer, so he's definitely no dummy. I guess I just have to accept that no two babies are the same.

Day Seven

What She Wore: Blue jeans, black hoodie with a pink Fleur de lis on the sleeves, tennis shoes.

I went on my playdate today. I had a great time, but it did leave me feeling sad. The other girl's baby was a fire cracker--staring at you with her big blue eyes. Charlie has a ways to go. He improves day to day, but his lousy vision really keeps you from feeling like he's present. He'll smile at a cell phone ring, but doesn't glance your way when you call his name. He doesn't pick up toys, but I think there's little incentive when they're hard to see. It's difficult when you don't have anything you can DO. I just have to wait and see how he develops--slowly but surely is my hope.

Who knew a playdate could be so hard?

I'll do it again, though. Life may slow down, but it doesn't have to stop.

Oh, and I did grab the chair. I'll take a "before" picture, and an "after" once I've got it spruced up.

Day Six

What She Wore: blue jean capris (what else); blue t-shirt from a school I used to work at; black strappy sandals. I cannot wait for it to get cold, so I have an excuse to go out and buy some new pants!



I'm still stewing over that long entry--trying to find the right words when I know that many of the people involved will log on and read what I have to say. Somewhere along the way, I've lost some of my ability to just say whatever is on my mind at any given moment--perhaps I am too diplomatic.



In any case, I'm still working on it. In the mean time I took a stroll down the street, and a neighbor is throwing out the coolest retro chair. I'm wondering if I should run down there and grab it for myself.



It looks kind of like this.

Day Five

What She Wore: Early on I was wearing wide-leg blue jean capris; a black pin-tucked, short-sleeve tee with a modified mandarin collar (I had to look that one up), and black and white houndshooth flats. Later I put on yoga pants and a t-shirt--I have to be comfy on the road.

I'm tired, so I'll keep this short, and tomorrow I'll probably post something long because I've got a lot of crap swirling around in my head, and it won't leave me alone until I write it down.

Driving from Arkansas to Louisiana, you cut through Mississippi. Somewhere along the way is a sign that reads:
Miss. Juvenile Rehab Facility.

Am I the only person who reads that and immediately pictures a girl in a sparkly pink dress wearing and tiara and a sash?

Day Four

What She Wore: Wide-leg, blue jean capris; black, grey, and gold tee with a square neckline and some other crazy business that I can't describe adequately; black strappy sandals. I'm getting ready to change into some grubbies, though, because we're going hiking!

Here's what I like about our former church:

We handed Charlie over to a big, burly, bald, tatooed prison guard who was working the church daycare and I thought, "Whew, it's David. I'd hate to leave him with anyone strange."

It's a wacky but wonderful place.

Day Three

What She Wore: gray running pants; white LSU t-shirt (geaux tigers!); tennis shoes. I"ll probably change my clothes a couple of time today.


In the spirit of posting every day, I will, but today is more news than anything else. In about fifteen minutes, the Hub, Charlie, and I are heading out to Little Rock. I'm going to visit my old students who I abandoned suddenly over the summer; we're going to go worship with the amazing church family who prayed for Charlie; we're going to visit with some friends and eat some delicious pizza. I'll be back on Monday, but I'm going to try to bring my lap top to keep this thing going.

So much is happening these days.

Overcoming

What She Wore: blue jean capris; grey t-shirt from my first teaching gig; black strappy sandals. I know it's time to do laundry if this is what I'm wearing on a Friday.

There's been this preview on Lifetime for about a million years. It's for this movie, Matters of Life and Dating starring Ricki Lake. Based on the preview, I'd say it's a story of how a woman figures out life after a mastectomy. Just watching it, you get the feeling she's triumphant in the end while still looking sexy and finding Mr. Right.

I keep watching and thinking that I have to figure out how to become triumphant after all that's happened to me.


But then I got to thinking. . . and that always leads to trouble.


I don't think that I'm supposed to triumph over all of this. I don't think I'm supposed to get over it. In my humble opinion, I think that I'm supposed to learn to deal with it. For me, what has happened to Charlie is like a death in the family. Not exactly like a death, but I have definitely experienced a loss. I am mourning the death of a dream--the dream of a healthy child who snuggled next to me the day he was born, who never left my side, never felt pain, and whose potential is unquestioned.

When someone close to you dies, you don't just get over it. You learn to deal with it. Slowly, the good days outnumber the bad. Slowly, you learn how to function with this new life. You may still miss the person. You may still weep. You may wish things were different. Mourning a loss is not the same as climbing a mountain, emerging victoriously at its peak. Rather, mourning is like driving through the hills in Mississippi: there are up parts and there are down parts.

I guess what I'm saying is this--figuring it out is a process, not a destination. I can be hopeful, but that doesn't mean that I'll never cry about what happened. Being sad doesn't mean that I'm not moving forward--it's just part of the process.


Seriously, blogging is the best therapy out there.

Heard in the Other Room. . .

What She Wore: LSU shirt, blue jean capris, bare feet.


Oh man, this is digusting.


This is at least a three wipe job.


I sure wish I hadn't bounced him on my knee for so long.


There is NO way I'm going in there.



Today's the first day of that thing where you blog every day for thirty days. Wonder if I can do it?

Arg

What She Wore: I'm in my pj's now--purple LSU t-shirt, gray running pants.

Sometimes, dealing with medical personnel is just annoying.

Bino requires his liquids to be thickened. This is because he was ventilated for two weeks following birth, and this killed some of the reflex that protects the lungs when we swallow. Thickening his milk prevents him from aspirating and possibly choking or getting pneumonia. Every kid we knew who left the Cardiac unit needed some type of thickener in their milk.

Since we changed insurance companies, the medical supply company has been telling us that our new company will not cover thickener (this nasty goo called Simply Thick). Now, my benefits packet tells me that it will be covered since we're under doctor's orders to use the stuff (not to mention we're possibly preventing his death or hospitalization here). The Med Rep keeps saying that it's an "additive" and we keep telling her that it's medically necessary. It's as if she's unable to hear the words, "he failed a swallow study." We've told her ad nauseum to just mail us the thickener. If our insurance fails to pay, we'll do so with a smile because we know our son needs it till he's at least six months.



Today, she called to say that she would not be shipping our much needed thickener since our insurance company doesn't cover it.




That sound you hear is me shouting in frustration. Listen carefully, you can hear it: GIVE. ME. THE. THICKENER.

Like an old-fashioned movie: For the love of God, good woman, just give me the thickener.

Like a 1980's drug lord: You got the stuff?

A la Quentin Tarantino: Give me the mutherhuffin stuff! You hear me mutherhuffer?


I have, perhaps, thought about this a bit too much. There was, maybe, too much caffeine with dinner.



Since Elaine valiently went to bat for us, and was shot down--wait, that never happened--Since we are currently without thickener, tomorrow, bright and early, the Hub will be calling up our insurance company trying to figure out what we have to do to get this goo sent out to our house. We will pay out of pocket if necessary--we'd just rather not if it's covered. Meanwhile, we're throwing rice cereal in his bottles which does NOT agree with his little tummy, and praying that we're putting enough in there, so that the stuff doesn't run into his lungs.

Freakin' ridiculous.

I'm a Survivor

What She Wore: Black tee with a satin-trimmed keyhole neckline and three-quarter length sleeves; blue jean capris in a dark wash; some gaudy gold shoes that I am just loving these days.

Well, I knew it would happen one day, and it did. Today, while waiting in line at a children's clothing store, a woman asked me if Charlie had just had surgery. I was holding him in my arms, scars and shunt valve clearly visible. I have just recently been comfortable enough to let myself do that in public places. She was interested because a child she knows is going to be having a cochlear implant put in--I think she thought that's what Charlie had. It's pretty amazing the hardware we're sticking into people's heads these days.

I calmly explained that he had a life-threatening condition known as hydrocephalus. I explained that his spinal fluid didn't drain properly, and the only option was surgery. She asked me how they found out that he had it, and I told her a combination of head circumferences and CT scans. She wowed for a minute about how great he looked, and I babbled probably a bit too much about how lucky we are that these types of technologies exist. I paid for my goodies and left.

So there it is. I explained Charlie's issues, and the woman didn't run screaming from the building or anything. I even saw another woman nodding in understanding as I explained. I'm not going to lie and say that I always wanted my baby to be the poster child for shunt surgery, but here we are, making it work, and getting some damn cute baby clothes at the same time. Things could definitely be worse.