In Which We Have A Crazy Day

Today was one of those days that ended up being kind of ridiculously busy. 

While Connor was at school I worked on some roller derby business, spent some time on the phone with our insurance company and finished (finally!) planting out the herb garden in the forty minutes or so that the weather cleared up.  Then I searched for his hearing aids (which are still AWOL) while he took a short nap.  When he woke up we were off to run some errands, including stopping by our adoption agency to drop off some more paperwork and have a quick meeting with our program manager.  From there we drove directly to physical therapy.  Connor usually has PT on Wednesdays, but we needed to switch our time this week so instead we had an evening appointment, which we ended up having to push even later because we got stuck in rush hour traffic on the way there.  I was supposed to have a roller derby meeting after that and a promo as well, but by the time I got Connor home it was already over and I was absolutely exhausted.

I'm not used to doing so many things out of the house in one day any more-- at least not with Connor in tow.  For the past three or four months he's been having so many seizures that I've been pretty much confined to the house when Jer or his respite care worker aren't here.  I've forgotten just how much more energy it takes to pull an eight hour day of running around with a kiddo!  Connor did really well, though-- he seemed to enjoy himself and didn't get crabby or impatient.  I think that alone shows just how well he's doing health-wise right now.  He especially liked the adoption agency trip-- they had a large sign on the wall that included pictures of some Asian children on it, and he got really excited about that and asked to take it home.  He also asked to take the receptionist home.  We're working on the idea that all people who have  black hair and skin darker than his are not his sister, but I don't think he's quite got it down yet.

Thankfully tomorrow should be a fairly quiet day, and that will give me the chance to recover!

~Jess

In Which I Have A Stressful Day And Share A Guilty Pleasure

So I spent about eight billion years on the phone today trying to coordinate some more of Connor's various appointments and not having a whole lot of success.  This is one of the things about parenting a child with special needs that you don't read a whole lot about-- the boring, frustrating hours spent on the phone with the insurance company, hospital referral customer service, appointment lines, doctors' receptionists, etc. trying to make sure your child gets the care that allows them to continue to do some slightly important things, like living.  I coordinate Connor's care with ten different specialists spread out over four different hospitals, and believe me when I say that it's a full time job.  For the most part I've got navigating the system down to a science, so I get really frustrated when I have trouble scheduling something that I know shouldn't be that difficult.  Today was one of those days, and after eating my weight in chocolate I was still feeling ticked.  So I had to break out one of my shameful, secret indulgences.  I can't believe I'm actually telling you people this.  Ready?

Sometimes I read romance novels.

I know!  Can you believe it?  I can't bear to put them on the shelves with my beloved Anna Karenina and Les Miserables, so they're stashed in a corner where I hope no one will ever notice them.  This is because I don't just read romance novels.  I read bad romance novels.

Yes, I eagerly scour the "F" reviews of websites like Smart Bitches, Trashy Books for reading material.  And then I savor every minute of horrible, purple prose.  It's simply impossible to be grumpy when you're not only eating your weight in chocolate, but you're doing it while reading a book entitled Pregnesia.  And yes, that book is every bit as horribly awesome as it sounds.

My friend Julia and I have gotten into a bit of a competition over the last few months to see who can find the worse romance novel ever.  She informed me today that she's sending me a new one, and I can't wait until it gets here.  And when it comes, I'll shut myself in the house and spend a couple of hours laughing so hard that snot comes out my nose. 

I hide when I read these books.  This isn't only because it's kind of bad etiquette to have snot coming out of your nose in public, it's also because of this one time I was sitting in a coffee shop reading The Playboy Sheik's Virgin Stable Girl and I kept breaking out in uncontrollable fits of giggles, and then the woman at the table next to me leaned over and asked me what was so funny.  So I told her that the book I was reading was so hilariously bad that I couldn't help myself, and she peered over my shoulder at the title, gave me a deeply wounded look and informed me that she was a Huge Romance Fan and this was one of her Most Favorite Books and it was a Passionate Love Story and certainly not a laughing matter.  Whoops.  I felt kind of like I'd kicked somebody's puppy or something.

So now I hide and giggle uncontrollably over my books in the house where no one can see me. 

~Jess

Oreos of Terror?

As many of you wonderful readers pointed out, I should probably give this new doctor a chance before being so hard on him.

Thanks, guys, for putting me back on track when I get whiny! I tend to get a little overwrought about this sort of stuff. With any luck he'll be a great doctor. I was just really hoping for somebody who was going to be sticking around for a while, since the residents head off to other locales after three years. You all are right, though; I shouldn't knock the guy 'till I've met him.

Speaking of being silly-- I realized this morning that I forgot to declare the box of Oreos I included in Jer's last care package on the customs sheet. I now have a completely irrational fear that I will be fined and/or arrested for lying on a customs sheet. Either that or that the package will be blown up by a bomb squad due to the possible inclusion of "Terrorist Oreos." This would be a horrible waste of Oreos.

Today we went to go try out a few demo standers for Connor. I am sad to say that the two we looked at were definite no-gos-- they were pretty shoddily made and didn't really suit his needs. Looks like we'll be ordering all of his other necessary equipment first while we continue to look for a good stander. I'm disappointed, as it will mean a delay on the stander, but I'd rather get a good piece of equipment than settle for something that's going to need a whole lot of modification on the OT's part to make it decent. My theory is that if my insurance company is shelling out 3,000 bucks for a piece of equipment, it should probably not need to be taken completely apart and rebuilt from the frame up in order to work.

Here's some examples of standers, for those of you who aren't familiar with them.

Steve is going to try and get us a couple more demo models of other standers that might be better-- we sat down at a computer and scrounged up some others that seem to be worth a look. I'm really glad that we're able to look at demo models; not every company has them, but it's really really nice to be able to see what the piece of equipment looks like in three dimensions and to see how it would work with Connor.

~Jess

In Which Logic Has Nothing To Do With It

Busy, busy day today.

Early this morning Connor and I drove up to Renton for Connor's Family Conversations summer play group. They let all of the "graduated" kids from their Deaf and HoH play group come back during the summer, and they hold the sessions in various parks and playgrounds all over Pierce and King county here in Washington state. It was rather cold and blustery today, but we still enjoyed seeing Connor's old therapists and meeting some of the cute new little guys and gals in their birth-to-three program.

We left a little early and stuffed some food in our faces before rushing off to physical therapy, where we learned that Connor has officially outgrown his back brace, and since he's still a little curvy, we probably need to be seen by an orthopedic doctor. We'll add that to our list of specialists, and go get the referral when we're seen by Connor's new Primary Care Manager (PCM) later this month.

About that, by the way-- you'll recall I was not very pleased with the state of things on that front when I left for Dallas. I finally received word this week about Connor's new PCM... and he's a resident. And not even a resident that's been there a while: a fresh-out-of-school-this-is-my-first-time-practicing resident. I'm so thrilled. Because, obviously when you've got a kid with three four-inch thick medical files and mulitple life-threatening conditions who's hospitalized anywhere from ten to fifteen times a year and is seen by ten (or fourteen, or whatever it's up to now) specialists, the person you want in charge of keeping track of all of it is someone with the least amount of experience possible. No doubt this will make things run really, really smoothly. Riight.

I'm not upset about this or anything, can you tell?

We have an appointment scheduled with our shiny new doc on July 22nd, and during this appointment, I will have to:

1) Introduce myself and briefly outline my son's 12-inch thick medical history and 25 or so current conditions, practically all of which are ridiculously rare.

2) Renew all of our EFMP (Exceptional Family Member Program) paperwork, which is due at the end of July if we want to keep our respite care, priority housing, compassionate assignment, etc. The insurance company suggested during our discussion about appointment length that we should have done this back in June but as I reminded them there was that small problem of NOT HAVING A PCM TO FILL OUT THE PAPERWORK. Rar.

3) Fill out all of the paperwork that Connor needs for his health plan so that he can start school.

4) Get a referral for the orthopedic doctor and let the PCM know about all of our current pieces of medical equipment on order (I believe there are eight) in case the insurance company calls him wanting to know if they're necessary.

They originally wouldn't let us have an appointment until August, despite the paperwork due at the end of July. I had to have someone from the EFMP office actually go down and bully them into giving us an appointment before the end of the month. Here's the real kicker-- despite my and the helpful EFMP person's exasperated insistence that we needed a longer appointment, they still only scheduled us for thirty minutes.

I'm brushing up on my Valley Girl accent, as I figure that only by talking at approximately the speed of sound will I be able to cover all of this information with the doctor during the time allotted.

I love my insurance company. I especially love the fact that at this point they've shelled out somewhere around 1,300,000 dollars in medical expenses for my child, (and continue to pay around two thousand a week in therapy, medical supplies, and medication alone) and we've had no co-pays. You can't really beat that. Every once in a while, though, I really wish I could give the whole system a good kick in the pants.

Sigh.

~Jess

In Which Even More Fun Occurs

Well, good to know that God has an impeccable sense of dramatic timing. I'm running around trying to get things together here for a trip down to Texas; my grandfather took a turn for the worse but has rallied and is holding his own right now. I still feel like I need to go down there, though, so we've got plane tickets booked.

Anyway, I called up Connor's hospital to let them know that we'd be going on a trip. I do this whenever we leave the immediate area as a precaution so that if something untoward were to happen while we were in Texas the doctor would have already reviewed Connor's file and be ready to advise treatment, fax medical records, authorize procedures, etc.

Anyway, I'd called our insurance company, Tricare, about a week ago to see who Connor's new Primary Care Manager would be-- I knew that Dr. Adams, his primary pediatrician, was supposed to leave at the end of May but I hadn't heard anything regarding the new doctor he'd been assigned. They told me that no, Dr. Adams was still there and still Connor's doctor. I figured his timeline had just changed or something. Fast forward to today. I call up the pediatrics department and they inform me that not only did Dr. Adams leave two and a half weeks ago, but that they haven't assigned Connor another doctor. I have them transfer me to Connor's developmental pediatrician Dr. Aranda, who tells me that she is actually leaving the hospital in four days. They haven't assigned Connor another doc in that department either. This means that my son-- you know, the one with the twelve-inch thick medical file whom I periodically have to perform mouth-to-mouth resuscitation on-- has NO GENERAL DOCTOR WHO KNOWS HIS MEDICAL HISTORY.

Not cool, people. Not cool.

After I finished hyperventilating, Dr. Aranda (who didn't have any idea that we hadn't been assigned a new PCM) said that she'd personally ask one of the best doctors on staff to take us on. This makes me feel slightly better, though it still means that I'll be getting on a plane with no contact information for a doctor I don't know the name of who has never seen Connor before except on paper.

Gotta love military hospitals. This day just keeps getting better and better.

~Jess

Bad News: IEP Results

So we didn't sign the IEP.

I don't want to get into too many specifics right now, but essentially the IEP confirmed the worse-case scenario I'd hoped we wouldn't get into. We disagreed on some very major points, points important enough that there was absolutely no way we'd be signing the IEP as it is written. Thus we will be going to another meeting in a couple of weeks, and depending on that meeting will be attending mediation and if that doesn't work out, going through due process.

I have to say that I'm really, really disappointed, and actually very angry as well. I had high hopes for this meeting. Connor turns three next week, and he won't be starting school because we couldn't come to an agreement. I'm absolutely not willing to forgo the services that I know Connor needs, and will do everything in my power to assure that he receives those services. All the same, it's very frustrating to know that I'll be starting a long, drawn out process that never should have happened in the first place, and in the meantime Connor will be waiting in limbo for us to hash it all out.

To add insult to injury, Connor's insurance just denied his prescription for Entereal Pediasure, as they say that the diagnoses of his genetic condition, growth restriction, GERD, and failure-to-thrive aren't reason enough to make supplementary feeding necessary. I spent the morning on the phone with the insurance company, and we'll be starting the appeals process with that whole mess, too.

Let's just say it hasn't been the best of days.

~Jess