Let the Good Times Roll

A little over two years ago a doctor sat down with me and my husband in Charlie's hospital room and explained that an ultrasound had revealed wide-spread bleeding in his brain. The bleeding was a side-effect of being placed on ECMO--a heart/lung bypass machine. His little heart had beat too fast for too long and had just given out. When the machine that's saving your life is also killing you, the future becomes very grim indeed. I've read up on it since, and I'd say that Charlie's chances of making it through the first week of life were probably less that 10%--really, probably more like 5%. To say that was the worst day of my entire life still understates the magnitude of the feeling. To know that your child is sick is one thing--to know that nothing can be done is another. I think it would be more accurate to say that on that day, June 8th, I fell through the looking glass and have since been navigating a strange, wacky world full of white coats and scrubs.

They told us that they'd be running a test to be sure, but they suspected he was already gone--brain dead. They told us that we should be considering options for "withdrawing support," which is doctor speak for turn off the machines and let your baby die. Then they put us in a small room with a priest and a social worker.

It was a hard day.

Charlie and I were in two different hospitals--he needed a level III NICU and there was only one in the area. I'd had a C-section the morning before and still had an IV in my arm so I was limited in the amount of time I was allowed to visit. Eventually I had to go back to my hospital room. My husband went home to change his clothes and there I was alone.

News like that makes you hollow. The part of you that feels stuff has been amputated and the rest of your brain and body are still ticking away. I wondered about thank you notes for the baby shower I'd been given five days earlier. What would we do with all the toys and baby furniture? I tried to recall the grief advice that's printed in the back of What to Expect When You're Expecting.

I wasn't prepared to plan a funeral, but I eventually decided that I should call some people and tell them what was going on. I called my Arkansas friends, apologized for making them sad, and then hung up.

I knew then that I had to call my friends from college. I'd had them each send me their contact info so I could call them when my son was born and my husband had printed everything out for me the day before.

But I didn't want to do it.

When, for whatever reason, a pregnancy doesn't go according to plan, you blame yourself. Even if rationally you know that sometimes stuff just happens, you can't help but feel that you've fallen down on the job. That some way, some how, you could have done something differently and your baby would be fine.

So I didn't want to call my friends and tell them that I'd failed. That's I'd gone through thirty-seven weeks of pregnancy and now there would be no baby. It was like running a marathon and then breaking your leg in sight of the finish line.

I finally called the girl who had stood in my wedding as Matron of Honor. I told her the news and explained that I just couldn't' call anyone else--it was too hard. After she discerned twice that I was in no physical danger, we hung up. A few minutes later my phone rang and each time I hung up, it rang again. Each time it was a familiar voice calling from a faraway state in the middle of a work day--and they were hopeful and reassuring and exactly what I needed at that moment. Just typing these words--hell, just thinking about it--brings tears to my eyes every. single. time.

When I was released from the hospital two days later, a beautiful bouquet of flowers awaited me at my house--the card read simply "thinking of you."

I had the opportunity to spend this weekend with most of these women. The social butterfly of the group arranged a birthday weekend in New Orleans for herself and she and others who have moved out of state flew in. We shared hotel rooms, ate fattening food, drank, danced, and talked and talked and talked. It was a wonderful, tiring time. It nice to know that every once and a while you can slip back over to the other side of that looking glass and just be.

Wrapping Things Up

Unnnamed piece done for a friend who requested a purple and yellow fleur de lis.

Well, I called and scheduled an appointment with the neurologist. They couldn't get me in until The second week in October, so I've got a little more time to get prepared. I'm waffling. I'm scared to death of the idea that Charlie could get hurt and it would be MY FAULT. It would be different if my husband and I shared in these decision more equally, but for the most part, he's scared too and wants me to pull the trigger.

I have found what I consider another option: I'm considering asking the doctor if we can try Keppra. Doing a little research I found this web site: Crazymeds. It's not written by doctors or anything, but that's kind of why I like it. It's written in language I can understand and you can tell that the author is pulling info from a number of sources--not just the write-up from the drug company. It's still in the process of being created, so not every medication has a full write-up, but it you or your child is taking something that affects their brain then this might be worth a look-see.

Ok, enough about Crazymeds--Keppra! Keppra seems to have less of that sleep-inducing effect that you hear so much about with anti-epileptics. I've also had at least two parents on here leave positive comments about Keppra especially when compared to phenobarb. The only real issue as I see it is that Keppra is only approved as an adjunct for most seizure types (needs to be taken with something else). Of course, we don't even know if Charlie is actually having seizures--he's just high risk--so who knows what the doctor will say about that. There are also regional issues that you just can't account for--different parts of the country tend to favor different types of drugs. I guess I'll just have to wait and see what the doctor says. Patience is not one of my strong suits.

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I'm also waffling on the Mother's Day Out thing. I KNOW! I am so indecisive, right? Thing is, it's not cheap. Also, it would take Charlie away from me for about five hours. I'm not sure if it would be a good thing--yay! I can get all my errands done! Or a bad thing--bah! that's just more time where we're not doing ABR or lessons. I am considering not doing MDO and instead getting Charlie into a monthly respite night. Basically, kids with mental or physical handicaps go to a church for three hours and sing songs, play games, and eat a meal. They are assigned a helper and everything. This would be good for several reasons: social interaction AND it wouldn't interrupt the hours of the day when we normally have lessons/ABR. And I can't deny the greatness of getting a Friday evening to myself once and a while.

I guess it would also be worth noting that Charlie social anxiety seems to be getting better. When we took him to the aquarium it was SLAMMED with kids and mommies and strollers and he did just fine. He just concentrated on the fish.

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I guess I'll also comment a little on his physical progress since I know there are people who want to know about this stuff. Charlie can now climb an eleven inch step on his belly. He is also actively trying to push himself into a sit. He hasn't mastered it yet, but the intention is there and so is the movement--he just needs to get a little more comfortable shifting his weight onto his right arm. A final, smaller, but still important improvement is that he is starting to use a pincher-style grasp when he plays with his puzzles. We're inching along over here, and it's all good as far as I'm concerned.

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I could go on and on with the updates, but I'll give you a break now. I just wanted to add one final thing. Anat Baniel is a Feldenkrais practioner who broke off on her own and developed a whole practice working with children. She's giving an all day web lecture online this Saturday. To go in person would be almost two hundred dollars. The web version will be fifty. Just something you could check out if you were interested.

He Knows What he Likes

Athough we've made some really great strides in this area, Charlie is still very left-handed. The right hand is in reserve, but he's not one to use it very often.

Except when grilled cheese sandwiches are involved.

When eating a grilled cheese sandwich, Charlie will be eating a piece held in his left hand while desperately clutching another piece in his right hand. You know, just in case.

Goofy kid.

Being Stupid is Hard

I'd like to start off by saying that today's story is brought to you by hormones. I'm not sure exactly which ones, but I'm thirty years old and I have a pimple, so something has gone haywire this week.

But I'm getting a little bit ahead of myself.

I recently noticed that our cat, Max, has been looking a little plump. He's seven years old, so I thought maybe he was experiencing a middle age decline in metabolism. I suggested to my husband that we switch him over to wet food, which is pretty much the only thing you can do to get a cat to lose a couple of pounds. To quote our vet, "it's not like you can take him out for a walk." So my husband purchased a bunch of wet food and Sunday night we started trying to figure out how much to give him. After crunching some numbers, we figured he should probably get four cans a day. My hubby decided that since Max was fat, we should give him one a day. I protested, but was over-ruled. My FIL used to make Hubby run wind sprints in the back yard when he was like eight, so I guess he gets the heartless bastard thing from him. I once let him train me at the gym and I swear I didn't walk straight for a week.

The first day of the diet was brutal and I finally broke down under Max's campaign of kitty harassment and gave him another can. Hubby was displeased.

The next day I was tough and didn't give him another can. Sometime in the afternoon Max threw up a big pile of water. Later, he did it again.

The next day he continued with the water puking. At this point I was annoyed--I figured Max was filling his empty belly with water and it wasn't going so well. I also went ahead and made an appointment with the vet just to be safe.

I met with the vet and he agreed that Max was probably just drinking too much water. He also told me to go up to two cans a day. He cautioned me that starving cats was a bad idea since it can cause cats to go into LIVER FAILURE. At this point I freaked out a bit. Ok, a lot. I mean, this is my first baby. We used to joke that Max came from my uterus--that's how much I love this cat. He's chill and friendly and playful and just a really cool animal--people just love Max. A friend of ours calls Max a gateway drug--people meet him and want a cat of their own.

So I go home and tell my hubby about the potential liver failure. I may have been upset. I may have gesticulated several octaves above the norm. I may have then had a drink to calm my nerves. Maybe.

The next day Max is on the two can regimen and I notice that he's still acting funny. First, he poops right in front of his litter box. I assume this is some sort of retaliation for the diet and brush it off. Later, he begins walking around the house mewing and scratching at things. Again I'm thinking he wants us to know that he doesn't appreciate the changes to his culinary fare.

That night I'm in the bathroom when Max stalks in and begins mewing. There was food in his dish so I pretty much started freaking out. He walked into the corner and began clawing the bath mat like he had to go to the bathroom. I check his litter box. It's still there. I put him in front of it and he refuses to go in. Again, he's mewing; he's pawing the ground. Me? Well, at this point there isn't enough alcohol in New Orleans to keep me calm. I am CONVINCED that Max has developed a rare case of can'tpeeitis as a result of the diet and NOW HE IS GOING TO DIE. I run into our bedroom where Hubby is trying to convince Charlie to sleep--a nightly ritual that I'm pretty sure Hubby likes more than Charlie. I'm shouting "I don't care if Charlie sleeps--you've got to help Max pee!"

Just re-reading that sentence makes me realize just how hella crazy I was at this point. What exactly did I think my husband was going to do? Pee for him?

Hubby comes in. He examines Max's funny behavior. He tries to jam Max into the litter box, but it's a no go. We stare at each other. We scratch our heads. Max is still pawing the ground and mewing. At this point the two genius in the room decide to actually look in the litter box.

Whoa!

Apparently Max was doing more than just throwing up water. He was also creating a small lake in his litter box.

It was bad. Hubby and I are over-litterers. We put a LOT of litter in the box--several inches worth. For us, more is more when it comes to litter. I kid you not, the litter had turned into one frightening, mushy block of cat pee. It was pretty freakin' disgusting.


While we were getting that taken care of, Max gave up on his idiot parents and pissed on the floor of the bathroom.



Moral of the Story: Diets Suck

Up Next: Falling Down in Front of a Large Group of People

I've already established Charlie's love of rap music.



Well, I'm pretty liberal in what I let him listen to. I'm not a huge fan of censorship when it comes to literature, so I try to not go too parental advisory with music either. Despite what my Dad says, I think all music is an art form and while some is clearly executed better than others, that doesn't mean that we should restrict it.



I have my limits, though. I try to only download the radio versions of songs--I avoid profanity and blatant sexual references, but I try not to edit based on innuendo. That' s why my kid can listen to Lollipop but I'm not comfortable with Blame it on the Alcohol. One dances all around it and the other just comes right out and says it. While we're on the subject, how is it possible that Birthday Sex is a song that plays during the lunch hour? And have you listened to the lyrics? It's your birthday, here's some sex? How 'bout you get me some flowers and take me out to dinner, mmkay?

So there's this song called Gigolo. I didn't download it, but it came on one of those NOW Cd's I bought several years ago. I don't let Charlie listen to the whole song, but he really likes the beginning with its flute-like melody, so I let him listen to that part and then skip on. Besides, I've tried listening to the lyrics, I've even read them on the Internet and they are completely unintelligible--and this is coming from a person who taught special ed for five years.

So today we're at the pediatrician's office and Charlie is whining whining whining. Apparently Ice Age isn't his thing. So I reach in my purse, grab my iPod and let him start listening just to keep the peace.

You can see where I'm going with this, right?

He makes it through weigh-in and the nurse's exam with no problems. When the doctor comes in, though, he starts whining again. I pick up the iPod to see what he's listening to--he'll often whine when he wants me to change the song. Well, he's whining 'cause it's playing Gigolo and that's not a song that he listens to. As I'm changing it, though, his pediatrician exclaims, "Does that say Gigolo?"

Ummmmm, yeah.

Later today I'll be sending out invites to my funeral because I'm pretty sure I died of embarrassment right then and there.

The Swirl

If I were being honest, I think that I would have to admit that I have a pretty hard-core case of ADD. I don't have ADHD--I could sit on my butt for hours--but my mind is pretty much off to the races. I hate to do one thing at once--even as I write this post I have a game of spider solitaire going and I'll probably check my Twitter, Facebook, and e-mail before it's finished.

I did fine in school although I think I listened to my teacher about never--I spent a good deal of my time decorating my monthly calendar and sketching what I was going to wear to the next formal. I mean, a girl has to have priorities, right? To the annoyance of many of my classmates, I had good grades, so I never really noticed my extremely distractability.

In college however, it was brought to my attention that I am literally incapable of sitting through a movie without either a running dialogue or a magazine. I can remember at least one occasion where I was banished to another room during movie time.

I've never sought to medicate myself for it or anything. I CAN keep quiet although I'll probably have a notepad full of doodles at the end of a meeting. Truth be told, I'm fine having a brain that's always looking for the next thing. The only real problem it gives me is insomnia--there are nights when I just can't shut my brain off--but I suspect that if exercised a little more regularly that even that wouldn't be as much of a problem.

So where was I going with this?

Oh yeah. When you have a brain like mine, there's an endless list of things that flit in and out and sometimes it takes a while before you grab hold of one of them and really start chasing it down.

But lately I seemed to have grabbed hold of something and I can't seem to let it go.

A couple of weeks ago we went to have dinner with a college buddy of mine and my husband's. He's fully aware of Charlie's issues, but we don't see him that often, so when we sat down I gave him a quick appraisal of the situation and this is what I said, "think of Charlie as someone whose had a little too much to drink--he knows what going on but it might take him a little time to act on it." At which point my husband muttered, "well, he is on Phenobarb."

I kid you not, it was like someone had slapped me in the face.

I mean he IS on Phenobarb. And he does often have a sleepy expression on his face. And I've been blaming it on low tone this entire time, but what if it isn't low tone? I've never known Charlie not on Phenobarb. I've heard other parents describe their children as lethargic and sleepy on Phenobarb and yet I never felt it was having that effect on Charlie. But really, I have no idea.

So now that thought is racing through my brain and I'm trying to sort out how I feel. I KNOW that Charlie has abnormal brain waves and while abnormal brain waves put you at a risk for seizures, there's no guarantee that a person will actually have seizures. And even if he did have seizures, would they be big, bad, scary grand mals or would they be petit mals? or partial seizures? Are there other drug possibilities? My ADD brain is combustible with questions. And while there are other parents who have traveled this road or who are traveling it now, I still don't know what the effect would be on my child and it's not a decision I really want to get wrong.

So here I sit and I'm fairly certain my poor neurologist is going to get a visit and a list of questions, but man is that thought scary. It's never easy to rock the boat, but maybe this time it's worth it.

My husband said these were horrible pictures, but Charlie really liked his trip to the Aquarium and I wanted a little memory of the trip, so there ya go. Crappy pictures taken by my not-very-fancy camera.

Jinx

Have you ever had that feeling. . . you know, where if you talk about something then it might not happen?

Well, I haven't said anything because I don't want to jinx it, but I think Charlie is talking.

I know what you're thinking? Big honkin' revelation, right? First of all, he's two, he should be talking, and second of all, I said "think." Clearly it's a little early to be calling the Associated Press.

So here's the deal: When Charlie watches TV, if he thinks no one is around, he talks to the TV. At first it was just sounds: buhbuhbuh when they were saying banana and atatat when they were saying cat. Keep in mind, he NEVER does it if he think you're around, but if you're standing behind him, or if you --and this is a completely hypothetical example--slip into the other room to update Twitter, then he starts up.

And now it's starting to sound like actual words.

The other day I was on the floor painting (who needs a studio when you have faux-wood floors?)when I distinctly heard what sounded like wawer. I looked at the TV and sure enough, they were on water. Two days ago, while working with his Feldenkrias lady, she asked him to say her name, and he did! Completely blew me away. I've also heard what I think was apple and I love you. Both times he was repeating something someone else said. Both times he was talking to someone that wasn't me.

I don't know if he's got performance anxiety or what, but I still think it's a good thing. If he wants to practice on the TV for a while, fine. I'm such a chatterbox, he probably talks to the TV because it lets him get a word in once and a while. Side note: Another special needs mommy called me the other day and we talked for almost an hour. Seriously, I need somebody to shut me up. She's just lucky it wasn't Happy Hour--we might still be talking. Gah!

Anyway, I'm just excited that he's starting to make meaningful sounds. I'm not crazy (well, I am crazy, but for completely different reasons); I know we have a long way to go with communication, but this is progress and I love me some progress!

ABR Visit 4 Recap

For those of you not interested in the nitty-gritty--just skip down to the before and after photos.

I think I need to say upfront that ABR is relaly in its adolescence right now. There's a lot going on in the Montreal office. The inventor of ABR, Leonid Blynum, has given the Centre his stamp of approval and he's no longer watching their every move. The trainers are now free to do evaluations. He still helps with the development of treatment plans, and views videos of children's progress--he's just not micro-managing the whole affair any more. This is an expected part of opening an ABR center, but it's still a change. There are also some staffing changes going on: they lost their administrative assistant, and one of their trainers has gone on the Argentina center.

All of these things added together to make this particular satellite session a little bumpy for me. I wasn't sure what time I needed to show up, and I got a bunch of bills from the financial office right before we left. To be fair, the bills were old, but I guess with all the changes they didn't get them out to me until two months after the fact. I've been a big fan of ABR, but as I was making the eight hour drive to the satellite, I was feeling very bleh about the whole thing.

I ended up feeling completely re-invigorated by the whole thing, though.

ABR has now put together a very comprehensive manual for each family. The manual is inside a chunky, three-ring binder and is positively full of information. They have lots of theory, complete with pictures, in there. This is great for people like me who are so visually-oriented. They are also giving up handouts that outline all of our exercises.

The best part, though, is that they gave us our first-ever progress file.

They took pictures of Charlie when we first started ABR and they took some more when we were in Plano in May. They put these images side by side to show his overall progress in different areas. Some areas have made great progress--others have made less, but the overall picture is a good one. He's made great gains in his neck and upper body strength. These are also the areas that we've been focused on the most.

We also got our new exercises. We're working on almost his entire back--upper back, sacrum area, and the back of the neck. I didn't include the pictures of his back because the changes there have been very slight. We've also got work to do on his cheeks and the big indentation he has in the center of his chest. Oh, and we've got the friggin' clavicle again. I KNEW that was going to happen. I have a feeling I'm going to spend about a million hours on that stubborn clavicle.

I know that if you've read this far then there's a good chance that you want to know if ABR is right for your family. Or, you're just crazy-curious and in that case, read on with your bad self. So, I'm going to spell it out in brass tacks. What did it take to get these results. As best I can estimate, it took $5600 for the first six months. That's almost a thousand dollars a month and believe me when I say we can't afford that.We've had a lot of generous help from multiple extended family members. It actually hurts me a little just to think about that amount of money, but in the end, I can't stop the ABR. The results have just been too good. We know that in the following years things won't be nearly as expensive, but still. . . I just keep reminding myself that its cheaper than college or a car and people provide those things to their kids all the time.

As far as hours go, these pictures represent about 220 hours of manual time. I did almost all of it in front of the TV, sitting on the couch. Actually, I think there's a permanent impression in my couch from the all the ABR time. An ass-print if you will (thank you, Chandler).

I guess all the changes don't mean anything if you don't get functional change, so I'll also outline the functional changes I've seen in Charlie:

1. Began being able to commando-crawl independently for several yards.
   
2. Can sit in grocery cart although we don't let him because he tries to lick it.


3. Can sit upright with only a small amount of support at waist level.


4. Improved vision use.


5. Began rolling onto his stomach. Can roll in both directions (does have a preference, though).


6. Sits on his butt as opposed to his lower back.


7. Rides comfortably in a car seat.


8. Reaches for items of interest.


9. Gets into the four-point crawl position (no crawling yet).


10. Crawls up a step and pulls into a high kneel.


11. Prop sits for extended periods of time.

So are these things worth the time and money? Every family has to decide that for themselves. For us, the answer is definitely yes. If you any questions about ABR, please don't hesitate.

I think this one speaks for itself--he's a lot stronger and he's not sitting on his lower back any more.

Again, stronger.

Lengthening of the neck from the front and the back. The front looks better, but I've done very little work on the back of the neck. Most of its improvement is incidental.

Decrease in the diamond shape of his torso.

Increased appearance of chin and jaw line.

Culture Shock

Well, we've made it to Plano safe and sound and we're getting ready to attend the Holland mafia meeting, so things are busy here. Just wanted to share a little tidbit. . . .



Long before there was a Charlie or a blog, Hubby and I lived in a little town north of Dallas near the Oklahoma border. The drive we took from that town to visit our relatives in the New Orleans area is pretty identical to the one we took yesterday. We've probably stopped at every rest stop along the way and over time we have developed preferences about where we like to stop.



At some point we discovered Eddie's BBQ in Alexandria, Louisiana. Alexandria is a base town that lost it's base some time back and it's struggling to get a new identity. It's a little faded and worn around the edges. Eddie's first drew my attention because it had an outdoor picnic area and a grassy field. Perfect for a girl traveling long distances with her dog. I'd sit outside, eat my BBQ, and Buster would sit in the grass watching Dog TV (that's what we call sniffing the breeze at my house). Eddie quickly won me over, however, with a delectable concoction known as the Potato Jubilee. Picture a bakes potato and then add BBQ beef and sauce. It's not sophisticated, but who the hell cares? It's good.

Well, as we headed toward Plano, I informed my husband that we'd definitely be stopping at Eddie's for the Potato Jubilee.

So we're sitting at Eddie's BBQ and and in comes this older couple. They pick up a menu, look it over, and then they approach the counter with some questions. Know what question the woman asked?

"Is the salad just iceberg? Or does it have some Romaine in it or anything?"

I realize this seems like a pretty reasonable request, but let's think about it:

We're at a BBQ joint in rural Louisiana.
One that's attached to a Texaco station.
Whose motto is "ah likes da ribs" There are only four words in that motto and two of them have been misspelled on purpose .

Not exactly the kind of placed that's known for it's radicchio and arugula salad.

She perused the vegetable selection where she was disappointed to find that most were stewed with bacon. Also, at BBQ joints, macaroni and cheese and baked beans are considered vegetables.

She finally settled on a baked potato with no toppings.

That's like a crime against food.

Fin

There's been something going on in my personal life and I haven't mentioned it because I haven't known how to begin or what to say or how to respect all the parties involved. But things are pretty much wrapping up and I guess it's OK to say something now.

My BIL and SIL are getting a divorce.

I know it's not a BIG deal. They're both young, there are no kids, and they'll both be able to go on their separate ways with almost no aggravation. They were due for a move to The Great North so my husband's brother will head on alone and his wife (ex-wife?) will do whatever it is she wants to.

The thing is, we were friends. The SIL and I. We hung out, went shopping, took pictures. We painted, I bounced business ideas off of her.


And now she's gone.

I was, of course, upset to hear it, but what can you do? I sent her an e-mail expressing the fact that the divorce didn't mean the end of our friendship and she didn't respond. So I left it at that. I mean, these things happen, right? It's not like it happened TO ME. I'm just an innocent bystander really.


Today the BIL came to today with bags and boxes of things from his old apartment. Tomorrow he drives off to the The Great North. As he was un-loading everything he handed me a plastic bag with a V-tech toy and some clothes in size 24 months. He said, "this stuff is for Charlie's birthday." That's when it hit me--that sad little plastic bag. She was always the one to take care of things like birthday cards and presents. A little note to cheer you up.

And now she's gone.


I know that I'll be fine. I think my BIL will be fine. But that' s doesn't mean that I don't miss her.

Proof That Things Have Changed

My hubby and I were talking about the upcoming meeting of the Holland Mafia. I told him I thought two other families would probably be joining us and was filling him in on their children. My husband wanted to be sure that he was up on everything so he didn't say or do something to offend someone.

Hubby: Is there anything I need to be aware of in advance? Anything crazy I might not expect?

Me: Well, Jude has infantile spasms that aren't completely under control so I guess it's possible he could have a cluster while we're at dinner. And Milo's got a Mickey button--I don't know if he's hooked up to his food all the time or what.

Hubby: Oh. That's it?