The big van purchase

Today we did something I have often dreamed about, even though it was under unfortunate circumstances: walked into a car dealership and bought a car with a check - no financing, no hassles. Of course, it was with Mia's money, and the only reason she has it is her accident, but still - it's a pretty neat feeling. We bought a 2005 Toyota Sienna van because our Nissan Altima cannot hold Mia's wheelchair. It was very easy - we had arranged the whole thing beforehand, and have been waiting for about a week for the van to actually get to Arizona so we could take it home. It's pretty no-frills, I guess - it has a CD player but no DVD player, because we want Mia and the new kid to actually deal with the real world while they're in the van. But it does have all the safety stuff, and the extra seat in the middle of the second row that we can take out if we want to, and the sliding door opens by itself (handy!), and we're going to get running boards installed this week, so we're happy. We got a decent deal on it, too, since we got through the dealership's fleet manager and paid in full. We can only use it for Mia-related stuff, obviously, but that's fine - we still have the other car. We've already taken her out in it - she's unimpressed. We're glad to have it, though, because we think she'll enjoy being out in her wheelchair as opposed to her stroller - it's higher up and she'll be able to see more. It's not modified in any way, so we're hoping it's easy to lift the chair into the van. We haven't tried it yet, but if it's tough, we'll probably build a makeshift ramp for now. Modifications can come later if they are necessary. Obviously, we hope they won't be.

In other news, Mia is still having pretty severe seizures. Her neurologist told us that we can double her dosage of Depakene if we think it's necessary without his say-so, and we may have to soon. Blech.

Krys got a job, which is groovy news, since she's getting to the point where she can't pick Mia up and it will actually help her relax a little more, since it won't be as physical as dealing with the child. It's also nice because she makes twice as much money as I have ever made as a teacher, so I can go back to being a full-time house husband (I've been subbing part-time for a while). I like not working. It is a state everyone should aspire to.

Speaking of Krys, I should pimp her new blog, Angry Liberal Mommy. She decided she was getting too mad reading the newspapers to simply bitch to me, so she wants to share her tirades with all of you! Check it out.

We learned tonight that Mia knows the word "dessert." Krys said it to her and she forgot all about her main dinner. It's nice that she knows it, but now we have to be careful about saying it around her. We already have to be careful saying "hair," because she puts her hand in it and either pulls out her ponytail or gets food in it. Kids R Phun!

More medication for Mia (yuck)

Mia got new medication today. Her neurologist decided to put her on Depakene because of her increased and pretty constant seizure activity. Sigh. We asked him what we should do with her other medication, Tegretol, and he told us to give her the new stuff on top of the old stuff. Well, that was weird. We would hope that we could wean her off of one medication while giving her the new stuff, but he told us to just keep giving her both for the foreseeable future. We'll have to see how it goes. Depakene is apparently stronger than Tegretol, because we only have to give her 3 milliliters a day instead of 14 (!) of Tegretol. It's also supposed to suppress a broader spectrum of seizures, so we'll see. We gave it to her today, and hey! she still had seizures when we put her down for a nap, but they seemed lessened. Maybe not. We hate having to medicate her, and now we have to medicate her three times over (she's also taking Tranxene, an anti-anxiety drug, which we mentioned taking her off, but her doctor was noncommittal), which is quite shitty. Medication sucks, even though it's necessary.

We may have our new van by the weekend. Ooh, fun!

I have received some very nice e-mails from people who read this. Even though I have responded to them, I'd like to thank them again, as well as the people who leave nice comments here. It really does make us feel better that there are people who have dealt with some of this stuff and know what we're going through, and also that there are people actually reading this who are interested in Mia. Thank you all.

Sorry - I got all sappy there for a bit. More sarcasm next time!

Conversations with Mia

Here is a typical conversation with my loquacious daughter:

Mia: Aaaahhmmm, fshf swis fisha cofischwa aaaaahhhh!

Greg or Krys: Really? How interesting!

Mia (smiling and rocking back and forth): Aaaahhmmm, guhfash uhkith a schwishish? Aaaahhmmm, tkeesh bashisa fquishisham!

Greg or Krys: Well, it's certainly possible.

Mia (smiling): Ah-bah-bah-bah!

Greg or Krys: I'll have to think about that.

This could go on for many minutes. And it's still more coherent than most of what you hear on CNN or Fox News.

The new chair

We've been having issues with our cat, so we haven't been posting here. Sorry - I know all six of you regular readers crave Mia news!

So Mia got her new chair this week. It was constructed by the same guy who made her standing frame, but unfortunately, he took a little longer than we thought, and she's already outgrown part of it. The seat part does not go all the way from the back of her butt to the crook of her knees, like Darwyn wanted. But it's still functional, and it gets her out of her high chair and closer to eating at the table with us. We're tired of eating at 7.30-8 o'clock at night, and would like to start eating as a family. The fun thing about the new chair is that she does not have a lot of trunk support, so she's having some problems sitting up in it and feeding herself at the same time. That's just another mountain for her to conquer!

She will probably be getting a new occupational therapist soon. One of the providers called us back and said they had someone, who now needs to call us and set up a time. It's pretty exciting, since she's been without an OT since her last one callously abandoned us (I'm kidding again, Kristin!). Unfortunately, we doubt the new OT will come twice a week, which is what her therapists recommend. We'll see.

Tonight is fun. It's 9 o'clock and she's still not asleep. We're not sure why. She just keeps waking up and screaming her head off. We gave her some ear drops because we think she might have an infection (on Friday night - wouldn't that be fun!), but when I went to the store to get them, she was happy and babbling like she always does. She's dead tired, but won't sleep. We've always been pretty sure she thinks sleep is for the weak! She slept fine this afternoon, so this is strange.

Anyway, the van may be here this weekend. We're very excited.

Mia in the hospital, April 2003. Note the puffy eyes. This was probably a day or two after the accident. 

Mia in the hospital, April 2003. Today is the second anniversary of her accident. Read more below! 

Not a good anniversary

Today it is two years since Mia's accident. Good Friday, 18 April 2003. It's somewhat hard to believe it's been that long.

She has made a huge amount of progress. I wrote about her accident at length back in February (I'd link to it, but I can't because I'm stupid - if you're late to the party, go to the February archives - the second blog entry is about her accident), and it's still amazing to me how far she has come. She has begun to feed herself pretty regularly, although she still has some issues with food she doesn't like (she'll eat it, but not by herself). Today she got a new chair, since her high chair is getting too small for her. The new chair will allow us to sit her at the table, and maybe we can start having dinners together. We tried last summer, but Krys always ended up feeding her and then eating a cold dinner, so the combination of a solid chair and Mia feeding herself is groovy. Our fingers are crossed.

She's also outgrowing her standing frame, so we're looking into buying this gait trainer. We think it will be very helpful, not only because she will be able to continue working on her standing, but she'll also be more mobile. We're also happy because she's becoming mobile enough to be mischievous. Yes, it's exasperating, but it's also nice, because it's typical 2-year-old behavior.

She's still having seizures too much, which is depressing, but otherwise, we're very happy with how far she has come. Many people who don't know she's brain-damaged can't tell, although the fact that she doesn't walk might give it away. Her sense of humor is fantastic, and she's very chatty and interested in what's going on. She watches Krys when she reads to her, trying to figure out the words, and she knows her favorite books by heart. She's getting pretty quick, too - it's amazing how fast a kid can be when she's just pulling herself along with one arm! She's also trying much harder to sit up and correct herself when she falls over. Soon, we hope, she'll be able to push herself up into a sitting position.

So most of the news is positive. It's still a sad day. If you have kids, you understand the horror we felt during those hours when we thought she was going to die. I just hope everyone out there reading (all five of you, hello!) appreciates how fragile yet tough we really are. Sorry, I'm getting maudlin. Here's some funny (paraphrased) lines from Seinfeld:

"So I take him out, put him to the side, and now I'm driving the bus."
"You're Batman."
"Yeah, yeah I am Batman."

See? No more gloominess!

Mia and Grandpa Wally. This is Krys's dad. Below is my mother. March was a big month for visitors. Pennsylvania, apparently, had poor weather. 

Mia digs facial hair. She likes to pull it, hard. 

Mia in her sand box. It actually gets really hot - we need some sort of covering. Krys does not want me to post this because she's "fat." I explain to her that seven months pregnant does not count as "fat," but she doesn't want to hear it. 

Smokey and Krys get comfortable. NOT A STAGED PHOTO! 

Mia's physical therapists make her walk. She does not enjoy this. 

Mia and Grandma. Note the splint on her left hand. This is to keep her hand open, since it tends to ball up into a fist. 

Mia's big girl bed. She digs it. So do the cats. 

Mia and Daddy. I don't know why I look so surly. Maybe someone had recently tried to pry the remote from my cold, dead fingers. 

Ch-ch-ch-ch-changes!

Mia's neurologist called us back (finally - so maybe he doesn't suck) and told us that the EEG didn't show any significant increase in seizure activity. That puzzled us, since she's been having more seizures, but whatever. I told him that we were giving her 7 milliliters at lunch and 7 right before she went to bed, and he said that was probably why she was having seizures - the medication from the previous night was gone by the time we gave it to her at lunch, and when we put her down for a nap, it hadn't had a chance to work yet. So he suggested giving her 4 ml at breakfast, 4 at lunch, and 6 at night. We've been doing that for three days and ... nothing. She still has seizures when we put her down for a nap. She's even had a few seizures at night, and the past two days she's woken up at about 4 in the morning and refuses to go back to sleep. Her neurologist is on vacation this week, but if it doesn't change, we'll have to talk to him about doing something different. Seizures suck, not unlike people.

It's all about the horn hierarchy

Mia's playing a harmonica right now. You may ask what the big deal is, but IT IS! (And how dare you question me?) I may have mentioned this before, but there is a horn hierarchy, which starts with a plastic flute and moves up to a harmonica. The intent is for Mia to figure out how to blow without biting on the horns (which she does a lot) and how to move her mouth so that the sounds come out clearly. It's all about teaching her to talk. She started the harmonica this week and is now playing it like a pro. So at least she'll have a future in a blues band!

We also just took her for a spin in her new wheelchair. First time out. It does not let her slump to her left, which is quite vexing to her - she's all about slumping, unfortunately. So she's forced to sit up, but it wasn't too bad - she enjoyed herself, it seemed. We hope she's not in a wheelchair for too long, but it's nice that it's helping her sit up straight.

That's all for now. It ain't War and Peace, people!

People suck

I'm a bit bitter right now, so it's probably not the best time to post something, but what the hell. I mentioned earlier this week that Mia had an EEG. We called the hospital yesterday to make sure her neurologist had read the results so we could find out if we need to increase her medication or change it. Well, the hospital, naturally, never got back to us. So Krys just called again and found out her neurologist is going on vacation tomorrow. He just back from a vacation, but whatever. She said that if he hadn't called by 3 p.m. (it's 1 o'clock right now) we should call back. This is while Mia is having yet another big seizure.

My question is: why do people suck? Is it because they're so overworked that they simply can't get back to people in a timely manner? Do they not care? Do they have other things that are more important? I realize that not everyone cares about Mia as much as her parents, but this is ridiculous. Her neurologist is a very good doctor and he wants to help her, but I don't know if he's stretched too thin. Krys has called several places in the past few weeks looking for a new occupational therapist, and none of them have called her back, not even to say, "She's on a waiting list." (That's the standard response, since OTs are difficult to find.) These are just the latest in a long line of suckiness from people we've had to deal with since her injury. Many people have been wonderful - don't get me wrong. I just wonder why some people whose job it is to take care of these things can't even do that. No wonder so many people are angry. I heard that the caregivers for Terri Schiavo didn't like her husband because he was such a pushy jerk. Guess what? That's the only way you get things done - by being a pushy jerk. I'm sure a lot of people we deal with don't like Krys, because she can be a pain in the ass. It's sad that that's the way you have to act sometimes. Why do people suck?

Our day at ye olde Maricopa County Court House

Krys and I went to court on Monday morning. We were there to get permission to invest Mia's settlement in mutual funds that will bring home more interest than the whopping 1% it's currently earning in a Certificate of Deposit. We also wanted to get a check for a van (her wheelchair is far too big to fit into either of our cars), reimbursement for the hyperbaric oxygen therapy, which we paid for from our own pockets since insurance doesn't cover it, a yearly "salary" paid to her home care giver (since we no longer know if it's going to be me or Krys), and a chunk of change to be used for her annual medical bills that aren't covered by insurance. All her money is restricted so we can't spend it all on a vacation to Aruba, so this will be our life for the next 16 years - going to court for any reason to do with money for her. It's not the worst thing, however - we have an excellent lawyer who is very nice, and her bills will be paid from Mia's account - and the cliche about lawyers being, well, expensive is not an old wives' tale, if you've never had the need to retain one. So we went to court, down there in the ghost town that is downtown Phoenix, where there were actual human beings on the street! Were they ghosts, or demons, or zombies? I don't know. Anyway, the Maricopa Court House is actually a nice building, built in 1928 and totally art deco on the outside and nifty on the inside. We had a judge who is apparently well disposed toward alternate forms of therapy, and batted not an eye at our request to be reimbursed, because he knows a little about hyperbaric oxygen and feels that if it's good for Mia, do it! He batted not an eye at any of our requests, actually, which was nice - the whole thing lasted about 25 minutes, and then we were done. Krys pointed out that it probably doesn't hurt that we're white, well spoken, well dressed - all the things we as a society supposedly have moved beyond, but we all know we really haven't. It's unfortunate that appearance still makes an impression, but it's true. Anyway, soon Mia's money will be invested in mutual funds and earning scads of interest, and the hope is that by the time she turns 18, she will be richer than Croesus and able to take care of her ailing parents! Okay, we just want her to be able to support herself if she has problems finding work. She's learning how to play a harmonica RIGHT NOW!, so how could she fail to find work - she can play in a blues band! (The harmonica, by the way, is part of the "horn hierarchy" - betcha didn't know that existed - which teaches her how to manipulate the breath coming out of her mouth and therefore help her talk. See how much educational information you get reading my ramblings?)

So that was one small traumatic hurdle out of the way. If only everything Mia-related was this easy!

E! E! G!

I was going to let Krys write about this, but she's been doing motherly things - I know, how selfish can you get? I also apologize for the lack of posting - my parents are in town, and suddenly, it's been a week! I know the five people who read this blog are DYING for their Mia updates!

Last Thursday Mia had an EEG. For those of you who aren't fortunate enough to have someone with a serious medical problem in their lives, and EEG is an electroencephalogram - it measures the electric currents in your brain. We have been worried about Mia's recent increased seizure activities, especially when she's trying to nap - it takes her a hour to go down for a nap, because she keeps having seizures and waking up. Even later during her nap she occasionally has seizures that wake her up, but since she moved into her big girl bed, she's been able to put herself back to sleep, which is nice. Her neurologist wanted her to get an EEG, so back to the hospital we went!

The actual process is more annoying than anything. Krys and I both went (yes, we're both still unemployed), and we decided that Krys should spend the entire time in the testing room with her (hence my insistence on her writing about it, but again, she's selfish - right now she's reading to our child - the nerve!). First, we had to get her up at five in the morning so she would be sleep-deprived. We were going to wake her up at six, but she woke up herself at five, so all was well on that front. When we arrived, the technician took us into a room and Krys held her while she (the technician) swabbed some goopy-looking goo on Mia's head. This, naturally, went over rather poorly with the child, and the screaming began! The tech had to put the goo on key spots on Mia's head, and then place electrodes on those spots - the goo keeps them in place. There's quite a lot of them, actually. Finally, the tech wrapped her head in a bandage so Mia didn't do what anyone would do - pull them all out. Krys sat in a rocking chair and held Mia, who by this point in her sleep-deprived, screaming fiercely day was all tuckered out. Then I left. The EEG tracks Mia's brain patterns, and the hope was she would have some seizures while hooked up to this thing so that the EEG can show what kind of seizures they are.

According to my wife's extensive research (I let her do all the research and then tell me about it), there are three kinds of seizures: localized seizures, universal seizures, and seizures that start one place and migrate to another. I don't know what kind Mia has, nor what kind is the worst. I do know that the last time she had an EEG, some seizure activity had migrated from the right side of her brain (where her injury was) to the left side of her brain. So that was fun. We're still waiting on results from last week's test.

As I said, I left. I had a snack, read my book, found out Terri Schiavo shuffled off this mortal coil, and was surprised when about forty minutes later the technician came out and said the test was done. The last time she had one it lasted a little longer. I found out she had something like seven seizures during the test, and they woke her up from her doze that she had drifted into. The tech also did a strobe light test (it's annoying) and said, all was well. She told us that Mia's neurologist would review the test on Friday or Monday, which in the real world means he might get to it by the end of this week. We are, however, going to start calling the hospital tomorrow to check up on him. The squeaky wheel and all that (sad but true, especially when it comes to medical stuff).

We're hoping that it's simply a case of her metabolizing her medicine more quickly, because then, we assume, we can just up her dosage. Now, that's not good news, but it's better than if her neurologist wants to change her medication to something like phenobarbitol, which is irritating to Mia's stomach (she was on it briefly when she was in the hospital) and can also impede her cognitive development. We'll take the seizures if it means she doesn't slow down her development. So that's that.

Mia's doing fine - babbling a lot, enjoying the visit from the grandparents, working hard in therapy. Soon, there will be more pictures!