The Daughter Chronicles

Monday, February 28, 2005

Workin' for the weekend with Mia

Mia had a groovy weekend. Yesterday we went to the Celtic festival here in Mesa (at the Community College). When we lived in Oregon, we used to go to the Celtic festival (the "Highland Games," even though -- no highlands!) every summer, and we've been twice since moving here. They're not as fun as the one in Portland, however -- at least Portland could feel like Scotland, occasionally -- it's weird seeing people strolling around in kilts in the desert. I also don't think it's as big as the one in Portland. Anyway, Mia was out and about, checking out all the kooks in kilts and fancy shirts and carrying big-ass swords. I'm a comic-book geek, so I can call 'em when I see 'em. We were only there for about an hour and a half, but she had a good time. At one point she was sitting by a cage (a corral, more like it) full of collies and other sheep/hunting-type dogs, and she was fascinated by them. Krys claims she said "dog," which is possible, since it's a short word and her "d" sound is excellent (she still won't say "Dad," though). At one point two dogs got snippy with each other and barked, which usually sets her off on a crying jag. Since her accident she has startled much more easily, something we've been trying to fix. The oxygen therapy is helping, and yesterday, she looked surprised when the dogs yelped, but she didn't cry. Progress!

In our quest to find more food for her to eat, we tried funnel cake and meat pies yesterday. She wanted nothing to do with either. I am convinced the only place you can get really good funnel cake is at the Jersey shore. Perhaps that's my youth talking, but the funnel cake yesterday was just ... okay. Anyone know any other place with good funnel cake?

On Saturday, we went to the wedding of one of my former students. We were debating on whether we should take Mia, since the ceremony was at five and we knew we probably wouldn't be home before eight (her bedtime is at seven, more or less). We finally decided to take her, and we're glad we did. She was very well behaved, even though we dressed her up in stockings and a pretty little frock. She sat around in Krys's lap for most of the evening and, like she does, held court for all her admirers. There were a bunch of people there who hadn't seen her in a while, so they all had to come over and check her out, and she said "Hi" to them a lot (it's the only word she says with any authority) and waved and smiled. It was a very nice evening, and even toward the end of the night, when she was getting tired, she was still smiling and checking things out. She enjoys getting out and meeting her public, since they clamor for public appearances (okay, that might be a little hyperbolic)!

Tomorrow: the end of hyperbaric oxygen treatment and a breakdown of what I think about it. Pictures soon! I have no digital camera, so I must get things developed!

Friday, February 25, 2005

Hey Brother, Can You Spare Some Durable Medical equipment?

So, I've been spending my time at home battling our insurance company over every aspect of Mia's care. This is nothing new. The saga began shortly after Mia's birth, when we received an EOB (that's Explanation of Benefits for all the lucky uninitiated) stating that payment for her routine 4-month old well-baby checkup had been denied. My subsequent conversation with the insurance company went something like this:

Me: "I received an EOB denying my daughter's well-baby checkup. Can you tell me why?"
Customer Service Rep: "Please hold while I look this up."

**It is helpful to add, at this point, that the call center is located in India. I deduced this after every single person I spoke with had a heavy Indian accent, and sounded as though they were reading from a script.

CSR: "Mrs. Bour-gas?"
Me: "Yes."
CSR: "Yes, I have found the problem. We do not cover pregnancy benefits for dependent children."
Me: "Excuse me?"
CSR: "Yes. I'm sorry. Your dependent children are not covered for pregnancy care."
Me: "My daughter is four months old."
CSR: "Yes, I'm sorry. Your daughter's pregnancy is not a covered benefit."
Me: "I don't think you understand. My daughter is four months old. It is physically impossible for her to be pregnant. This is a well-baby visit. Did you look at her date of birth?"
CSR: (defensively) "I'll need to speak with eligibility on that. Please hold." **four minutes pass** "Yes, it appears that there has been a mistake."
Me: "No kidding?" Sarcasm is lost on foreign CSR.
CSR: "Yes, we're very sorry. We'll get that corrected right away."

Our insurance provider has changed, but the red tape continues to be a problem. There are some improvements. Our current provider's call centers are in the USA--unless they're teaching the Indian call center workers to speak with regional US accents these days. I keep picturing a woman who resembles Indira Ghandi learning English by watching reruns of "The Jerry Springer Show."

Our most recent battle has been over an AugCom for Mia. This is an augmentative communication device--a small machine with pictures and buttons. Mia chooses a button, based on the picture, and a recorded voice tells us what she wants. Mia had her evaluation in October, and her speech therapist was hopeful that we'd receive the device by Christmas. Well, it's February and still no AugCom. So I call the insurance company:

Me: "Hi, I'm trying to find out the status of an augmentative communication device for my daughter. She had the evaluation in October and we still haven't heard anything."
CSR: "Let me look that up for you. ... Yes, we just received that request on December 20th."
Me: "Well, it's been quite a while. Can you tell me the status?"
CSR: "Well, it was sent to the Medical Department for a decision."
Me: "That was in December?"
CSR: "Yes."
Me: "Well, it's February. Wouldn't they have made a decision by now?"
CSR: "They have 60 days to make a decision. I'll give you the claim number and you can call back in maybe a week."

I call back in 2 weeks, foolishly believing that since we are only five days away from their 60 day cut-off, they will have made a decision...

CSR: "Well, that claim is in the Medical Department."
Me: "So I've heard. They still haven't made a decision?"
CSR: "No. It doesn't look like it."
Me: "I'll call back tomorrow."
CSR: "I'll put a note in the system."

Next day...

CSR: "Well, it looks like they decided that they couldn't make a decision, and the claim was sent to a manager. There should be a decision in 24 hours."
Me: "I'll call back tomorrow."

The next day...

CSR: " Well, it looks like the manager has not yet made a decision. Let me try to call her & I'll call you back."

No phone call. I call again...

CSR: "Let me try to call her. Please hold." ***several minutes go by*** "Mrs. Burgas, it appears she's gone to lunch. Can you call back?"

Later that day...

CSR: "Please hold while I try the manager..." ***minutes go by*** "Mrs. Burgas, she said she'll definitely make a decision on that today."
Me: "Ok. I'll call back tomorrow."

The next day...

CSR: "I'm sorry. The manager is still looking at that one."
Me: "I'm calling back in a few hours."

A few hours later....I get a major bonehead who can't even find the claim, let alone tell me the status. She keeps telling me to be patient in her heavy Texas accent, and I just want to leap through the phone, grab her by her undoubtably Flo-like beehive hairdo, and throttle her (no offense to Texans or people named "Flo" intended)... My frustration of the last few weeks becomes focused like a laser beam on this one individual.
Me: "You realize that this is equipment for a disabled child? They have been delaying and delaying for two months now. My daughter needs this equipment." I can hear my voice getting shrill and I'm trying to stop it.
CSR: "Yes, ma'am." I can tell she hasn't even heard me. "Oh, here it is!" She's excited now. She proceeds to read me every single note attached to the claim in sotto voce before telling me that it has gone to "Processing".
Me: "So, it's been approved?"
CSR: "Yes, it looks that way."
Me: "So, the approval got sent to the equipment provider?"
CSR: "Yes, it will be faxed over today."

As tedious as those conversations sound, I did leave out the part where they verify your name, address, and phone number every single time you call. These experiences are also less tedious than a former insurance company we dealt with (before Mia was born). Co-workers would gather around my desk when I'd call them. My famous line "Look, I'm nine months pregnant, it's 115 degrees outside, and my feet are swollen. I've got a lot of anger. Don't make me direct it at you!"

I have since learned from our therapists, and more recently a letter from the editor of Exceptional Parent magazine, that insurance companies bank on people just giving up. They figure that you'll just get tired of calling and go away. They hold on to claims as long as possible, because it saves them money. You'll notice that no action was ever taken until I started being a real pain in the ass. I was only able to be a pain in the ass because I suddenly have a lot of time on my hands.

I would not have even been upset if they had denied the claim in a timely manner. Sure, we would have had to pay for the AugCom ourselves, but we could have had it months earlier. Now, I have to go to sleep and save my strength to nag the equipment provider.

Wednesday, February 23, 2005

Mommas, don't let your babies grow up to be medicated

Mia saw her neurologist today. Her neurologist is Dr. Allen Kaplan, who apparently has a pretty good reputation around town. He's a very nice man, but he's a little overworked, and we had to get in to see him before he went on vacation for a couple of weeks. We went to the hospital and, naturally, sat around for a while. Mia is amazingly patient, and she just sat around screeching happily and drinking juice. When Dr. Kaplan came in, he checked her eyes to make sure she was following objects fine, and we told him she was having worse seizures recently. We aren't sure if it's because of the hyperbaric oxygen treatment she's been receiving lately (and I will have a long post on oxygen treatment soon), which is supposed to possibly increase seizure activity, and he said it's possible. So she has to get a blood test to check her Tegretol levels (Tegretol is her anti-seizure medication) and an EEG. Fun stuff. I hate medicating my child, and would encourage all you parents out there to try anything before doing it. If her levels are too small, we have to increase her medication. Blech.

Update on her vitals: she's 32 pounds and 37 inches long. A girl in the elevator going down after her appointment thought she was 4 years old and refused to believe us when we told her she was 2 1/2. I don't know if she's tall for her age, but some tell us she is.

Tuesday, February 22, 2005

The Saga of Mia

So why should I write a blog about my daughter? What's so great about her? Well, beside the fact that she is the most beautiful little girl in the world, I wanted to do this blog because she has a traumatic brain injury, and a lot of my friends, who live far away, want to know how she's doing. I also want to let other people who are raising kids with developmental difficulties what we do, because if it helps them, that's always a good thing. What's Mia's history, you ask? I'm so glad you did.

On 18 April 2003 (Good Friday), I was driving with my seven-and-a-half-month-old daughter in my car on Interstate 10 (eastbound). I got off the freeway on the Chandler Boulevard off-ramp and was almost immediately stopped by traffic (there's a light at the top of the off-ramp). While I was sitting there, not moving, my car was struck in the rear by a flatbed tow truck traveling at approximately 60 miles per hour. The driver had bent over to look for a map and didn't see the lineup of cars. He saw me at the last minute and tried to swerve, as did I when I saw him barreling down on me, but we both failed and he nailed me, spinning me around and knocking me about 200 feet. I broke my scapula and the driver's seat collapsed backward into the back seat. Mia was in her car seat, facing backward, and she wasn't moving and her eyes were closed. After freaking out for a few seconds, I calmed down and managed to get a few small grunts out of her. The ambulance came and took her to Maricopa Medical Center in Phoenix.

She had to have surgery, because she had a subdural hemotoma -- a mass of blood between her skull and brain. The doctors cut her skull open and drained the blood. They weren't sure if she would survive the night, but she made it through. She spent ten days in the ICU, and was in an induced coma for about five of those. Eventually she was transferred to Phoenix Children's Hospital, where she recovered for a while. All in all, she spent exactly five weeks in the hospital. While she was at PCH, her head started to swell, so her neurosurgeon put in a shunt to drain the fluid from her head. It's still there, and you can see it in her neck, which is kind of freaky.

Since she got out of the hospital she has had physical therapy, occupational therapy, and speech therapy, with music therapy thrown in recently. When she got out of the hospital, she was being fed through an NG tube threaded into her stomach through her nose, and she didn't move very much. Prior to the accident she had just learned to roll over, but now she didn't even do that. Since the damage was to the right side of her brain, her entire left side didn't work. She had seizures, and is on medication to help that.

Since the accident, she has made great strides. Her left side still does not work terribly well, but she can tummy crawl pretty well, and she can sit unaided, although she does tend to sit folded over her legs because her balance is poor. She has a frame that helps her stand, which she goes in every day to help develop her leg muscles. Her biggest physical problem is balance, which is keeping her from sitting up straight or standing, but we're working on that. She just learned how to drink through a straw, which was a big hurdle since she can't pick up a cup. She knows several signs and uses them pretty well, and her receptive language is far in advance of her expressive language. She understands plenty of what her mother and father say to her, but cannot tell us what she wants. It's frustrating.

She is now two-and-a-half, and is making wonderful progress. I just thought it would be nice to have a blog that chronicles her steps as she goes through them. As I mentioned, any advice is welcome. This is our first child, so it's all new to us!

Monday, February 21, 2005

Because one blog just isn't enough

I would like to keep everyone updated on the progress of my daughter, but I like to fill up my other blog with ranting about the world and comic book-related stuff. Therefore, this blog will be exclusively about my one daughter, and eventually, my other daughter (she's still cooking, and will be here in late June/early July). My wife, who's a bit skeptical about this whole blogging thing, will be posting as well (I hope -- she's much smarter than I am, and she is, after all, carrying Kid #2). If I ever figure out how to post pictures, I will. Comments are welcome, as is advice. More to follow!