We missed our final speech therapy appointment, because a certain little Tar is sick and feverish. I was bummed, because she is now without services until the district gets it together. Her speech therapy alone is $165 per week and OT is another $230 and we just can't shell that out on a weekly basis.
We went to the pediatrician, the 5th doctor we've seen since last Thursday.
We refilled standing prescriptions so we have extra on hand during this limbo period.
We spent $35 on these things. Without insurance, it would have cost just a bit over $100.
On Monday, and every day after until we find a solution, any day like this will cost about $100, more depending on if there are shots or antibiotics or any other medications involved.
If KayTar decides to play that little game we all love so much, you know the one, Dehydration Roulette, not only will we have to worry about the hospital. We'll have to worry about paying for the hospital, too. Fuuuuuun.
On to the roundup...
Thursday: Genetics and Neurology
These visits were actually extremely heartening. Everyone is thrilled with the progress she's made in the past 6 months. The geneticist didn't order any tests, because as our neurologist said, she has had The Workup. He doesn't have any leads right now, so no blood work. Hooray! The geneticist did, however, strongly recommend a thorough behavior/autism evaluation with developmental pediatrics. This wasn't a shock, of course, because it is now a frequent refrain. The neurologist agreed it is a good idea. She has these quirks that do fall on the spectrum, so I'm fine with the evaluation. With KayTar, autism is never going to be the root cause of anything. It might be a handy way to categorize some of her processing differences, though. The pediatrician and I both agree that if it helps facilitate her services, it is just fine. The most excellent news is that we don't have to see genetics for a FULL YEAR! Technically we can wait until after her fourth birthday, which sounds amazing. Ahhh. The neurologist agreed that she looks great, said we should keep treating her episodes the same way, and noted that her eye was drifting inward when tracking objects. We see him again in 6 months.
Monday: Pediatrician, well-check
She weighs 30 pounds! YAY! She is growing perfectly, despite her diet of Pediasure and chips. She is 37.5 inches tall. Everything growth-wise is just right. She still has some delays, but overall she's doing amazingly well. She's really come much farther, much faster than we ever thought she would. It has been amazing to watch and it has been fun to share that excitement with the people who have been helping us take such good care of her. The pediatrician noted the eye drifting as well.
Bah. We are always disappointed with the results of these appointments. They always feel rushed and she always says "Everything looks great!" Anytime we ask about a problem that we've noted, she turfs us back to neurology. It has been frustrating. But I thought if both the neurologist AND the pediatrician have seen the drifting, just in the last week, she'd catch it. But nope. She said she saw nothing and sent us on our way. In fifteen minutes of our arrival. I drove an hour and a half for this appointment and I left feeling decidedly aggravated. It was our last ditch effort to get it looked at before the sand ran out of the insurance hourglass and it was wasted, really. It isn't something that I mistakenly noted as a layperson/parent. It is something that two of her doctors noticed and brought to my attention. I feel certain that there is something going on there and I don't like it being disregarded out of hand. Like I said, bah.
Friday: Pediatrician sick-check
She puked in the waiting room. FUN! I caught part of it in my hands. MORE FUN! Another mother kindly ran to get me paper towels so I could clean up a bit. I wonder how many other kids have puked in that waiting room, which begs the question...WHY IS IT CARPETED? It must be a delightful haven for multiplying bacteria. Her throat was red, so we did the obligatory strep swab. She puked again. This time on me and her pants. Mmmm, the aroma of mucus and partially digested milk. The strep screen was negative, YAY! So it looks like a run of the mill upper respiratory virus. We're just doing her breathing treatments and keeping her fluids up. Oh, and her appetite stimulant is also an antihistamine, which means we FINALLY have something we can give her for congestion and she isn't stuck choking and puking in her bed at night. Thank God for compounding pharmacies.
That's it really. Fairly inconsequential. Next month she sees the feeding specialist, so if insurance isn't worked out by then we'll have to pay out of pocket. The following month is her ABR (hearing test), same story there. I hope we find a solution before then. I'm applying for night jobs. We have an appointment with social security to determine if she is eligible for disability, but it seems like a long shot. We'll see, and if we get anywhere I'll be sure to update.
Man, that just all sucks. Really. If you're trying to pick up a night job, maybe Starbucks? I hear that they have good insurance packages for part-timers. Although, what "good insurance" is and whether it would cover anything you need is another story.
Move to the NJ/Phila area, and I'll adopt you guys, every single one of you to get you covered.
I've done that...caught puke in my hands. Not a good thing.
I'm so sorry about the ongoing insurance nightmare.
Kyla - I'll be hoping for a quick resolution - maybe the social security will come through for you - move to CT where S-Chip got funded by the state...not that that should have had to happen. sigh. All the best, be well.
Puking in public...not good. But at least that had to be better than the time you were puked on and had to sit in it for hours while she napped on you. You're such a good mom!!!
I can't believe you might start working at night AND continue with school. You just amaze me.
Kyla, I'm so sorry things are so hard right now. This just isn't right.
I hope Tar is feeling better soon :(
So some good news and then annoying news to not be listened to. I HATE That.
why are those offices carpeted? One day Julia puked at her doctors and I noticed they are smart and have no carpet.
Hey, I think when you find insurance again you should also look for a new eye doc. 'Cuz that's crap.
Ooooh and I'm great at catching puke in my hands too...in fact, that's where Easton actually aims these days.
Hang in there, girl. You're amazing.
Oh...and you wanna talk nasty...the POSTPARTUM rooms at the hosptial I used to work in were carpeted. Ick ick ick. Baby puke. Mommy puke. Fluids of every kind. Oh ick. It was nasty. But we remodled. And then we moved to a whole new building. But still. Ick.
Ugh. Lapsing insurance, puking in hands, on pants... eye doctor who doesn't seem to listen to your concerns... not a great week.
Now this may be a really stupid question/suggestion, but what some shifts at a st*rbucks for a temporary position... I understand they offer health insurance to all their employees. Might be worth looking into until things get sorted...?
The gravity of it all just amazes me, and through this you still sound upbeat.
Opthamology has been the weakest link in our medical chain all along. Sometimes we wait for nearly 2 hours, only to see the doc for 5 minutes. Our concerns were continuously dismissed until it finally happened in the office. I tried to capture it on a digital camera or video so I could "prove" that I wasn't making it up. What's up with these people?
Remember the best way to piss off an ophthalmologist is to call them an optometrist. he he he. I think for the next visit you should ask (very politely) if you could see another optometrist!
So sorry for all the hard luck. I'm praying that some good news is coming your way soon.
i truly cannot believe you and your family havce to go through this all b/c you can't get the care you need in this country.
That's certainly a round up...fingers crossed you won't have the need to see any doctors unitl everything insurance wise is in place.
I hope she feels better--soon. And I hope things get resolved--very quickly--for all of you.
Oh, Kyla. This just sucks. Fingers crossed that no major expenses come up until this is all worked out.
Your puke story reminded me of my in-laws bathroom. Which is carpeted. Ewwwwww! I refuse to let my kids walk in there in bare feet.
Wow. Your past few days makes my measly week of bed rest look much more bearable.
What a family of troopers you guys are!
well that just sucks. Im sorry you have to go through this.
Yes sorry you have to go through all this.
And good catch!!
Oh, I knew I was a mom now when I reached out and caught puke the first time. Blech.
And while I hate that the insurance is not getting sall fixed up, it's good to hear she's doing well in so many ways. That must feel really good.
Catching puke. Been there. It's like trying to wrangle bubbles.
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