We had our final nutritionist appointment last Monday and she let me know KayTar's head has been jumping percentiles. It isn't just one off measurement, but a progression. She was always 10% for head circumference. Then it went up to 15%, then 30%, then at last measurement 35%. The number differences aren't much, we're talking centimeters, but percentile-wise, she's had an increase of 25%. So I emailed the numbers to the pediatrician, hoping she would immediately say, "Oh, that's fine! A negligible increase, really." but she didn't. So I'm waiting to see if I'm supposed to be worried or not. Times like this are always a reminder of those pesky lesions in her wee little brain that we are really unsure about altogether.
Talked to the ped this afternoon and according to her charts, everything is A-OK. The nutritionist must have made an error in the early measurements, because looking at her main chart, everything is good.
Item 2: Insurance
I know, I kind of left you all hanging on this one, didn't I? I thought I had it figured out. We were going to pay for sub-par individual coverage AND we would be able to afford putting both kids on the plan. KayTar completed her 18 months for HIPAA protection (or so I thought) and life would be splendid. Except. There has to be an exception, right?) I misunderstood HIPAA. HIPAA does not actually protect her from having conditions excluded. If I disclose KayTar's medical status, the new insurance will be fully within its rights to deny coverage for all those conditions or to deny her completely. If I lie about her medical history, it will be discovered, since she has several medical files full of this stuff. If I tell the truth, I feel like we are putting the last nail in this coffin.
A few highlights:
She's been sick with:
She's been in the ER upwards of 5 times. She's be hospitalized.
A feeding disorder specialist
Orthopedics (starting in March)
She takes daily medication.
Not to mention the diagnostic tests:
ABRs every 3-6 months.
I can't hide this stuff. I shouldn't have to hide this stuff. But I am afraid that admitting it will cause her to be uninsurable. They go so far as to wanting treatment dates, appointment dates....everything. It is such a headache and I'm really worried she's not going to be approved, or she will be approved with stipulations that effectively render the plan useless for her. It isn't a done deal yet, but I am really worried about that possibility.
When I spoke to the pediatrician this afternoon, we went through KayTar's file, so I don't disclose too much information. There are very little in the way of ACTUAL diagnosis or labels of any kind in there, so we're going to use that to our advantage and hope for the best. There are certain things that have to be mentioned, but other things are merely possibilities and don't have to be mentioned because they are not official.
Item 3: District Delays
KayTar turns three next Friday. Her ECI services will stop on that date. We lose our insurance at the end of the month. Once she turns three, she is supposed to filter right into the district for services, however, she is marked as needing a behavioral evaluation (which I agree with) and the process is halted until that occurs. The psychologist is backed up and right now KayTar isn't slotted until APRIL. That will be almost two months of nothing. Zero services. No therapy. It might make a lovely break, but I'm not all that pleased about it being forced upon us. I understand that she is backed up, but I'm frustrated that my kiddo will be without any kind of support services for that long. They are going to try and get her in sooner, though, I should know by next week.
Item 4: Episode on the horizon?
This morning during her deaf co-op session, KayTar was just so not herself. She couldn't focus, she kept zoning out, she was having difficulty understanding speech, it was a really marked change in her behavior and awareness. I might as well be mute for all she can understand me today. She is a little more wobbly than usual and looks like maybe she had a few jello shooters for breakfast. I noticed it before therapy, but it was more pronounced because we were trying to engage her in things she usually loves to do. She just kept checking out in such a way that I'd call her name and clap to try and get her back...it was the mildly disturbing kind of zone out...not just an "I'm bored, let's do something new." kind of distraction. It is strange though, it has only been 41 days since the last...not really a prime time. But I can't for the life of me figure out why she is so not right today outside of that. For whatever reason, she is really off her game today. If I had Spidey Senses, they'd be tingling. Unfortunately, I just have Mommy Intuition and it is twisting my tummy into knots. Tingling sounds preferable, I think.
And that concludes this week's episode of "Why is Kyla's Head Going to Explode?" Hopefully there is enough free space in my head now to study for my first A&P lab practical tomorrow night.
PS: There are lovely photos down below if you are in the mood for something lighthearted and beautiful. ;)
The insurance thing makes me FURIOUS. I can only imagine how frustrated you must be.
I hope it's not an episode coming. You guys all need some rest.
Have I mentioned what a great nurse you're going to be? You've already done it all!
You are so ripe for head explosion :) You are amazing what you manage to deal with on a daily basis.
Hugs and prayers.
No wonder your head is going to explode. That insurance business would make me want to scream and kick and maybe break some things. How mind-numbling frustrating to have to deal with that on top of your other worries.
Insurance companies drive me crazy? I assume you've looked into Medicaid? Two of my boys have medicaid...one with epilepsy, one with PDD. Due to the OMRDD waiver(office of mental retardation & dev disabilities) in NY our income is even waived. I believe you have the Katie Beckett waiver in TX. Is she not eligible because she has no actual diagnosis? I wish you luck.
Oh, Kyla. That all really sucks. Maybe a move to Canada is in your future? Our health care system has a lot of flaws but at least it's something...
The insurance stuff makes me want to go postal. When I look at the list of Kaytar's stuff I'm stunned at how similar she and Ethan really are. And you guys have ruled out CMV? It's a lot of stress my friend, I hope you are getting some time for yourself in the midst of it all. xoxo
The insurance thing SUCKS. I just don't know what to say. At one point you mentioned Josh's wages being only slight above the cut off for state-funded insurance (at least that's how I understood it)...is there any way you can work with that -- can he make slightly less? It sounds crazy, but as far as I can see, getting KayTar covered should be priority number 1. I mean, with the cost of medical services today if you were to pay it all yourselves..?
I get physically sick thinking about the insurance. Move to Canada. Med school is cheaper and health care is "free" (okay so we are taxed up the ying but it's better for the yang imo). Not much help but Bumper and I are sending virtual hugs and kisses - xoxoxoxoxoxoxoxoxo.
I have read you for a while but never commented..your post should be sent to Congress!!!!!..I am so upset about the healthcare..it is AWFUL!!!! Good luck to you.. I will pray for you...
I don't think I could ever tire of seeing that BubTar's big blue eyes...
I hope there's no episode, either. We're holding our breath over here as well...ominous rumbling signs on the horizon. Sigh.
I'm always in the mood for something sunny and beautiful, but also always here for venting.
The insurance alone would be enough to make a strong woman crumble. It's so worrisome, and just SO. WRONG. I'm sorry it's got you over a barrel, Kyla. Move on up here, if you can stand the snow...
Good grief. You're going to be SUCH a good nurse!
You know, The Baby's head did this sudden startling jump in size when some of her nutrition issues were resolved. Maybe it's that?
I am so frustrated for you... Good luck with the A&P- I remember those days fondly.
oh Kyla I think my head is going to explode now. Honestly if I had insurance woes on top of all else...I don't know. I guess I would hope I had a good ped like you do.
You know when you were describing head sizes in the first section I had to go back because I thought it was the neurologist who was worried. So hard to keep these specialists straight.
I am really pissed off for you about having no services for two months.
Your pediatrician sounds awesome. I can't believe you're juggling all of this at home while taking A&P. That is a tough class!
Hang in there.
is the school district exempt somehow from having to complete their evaluation in a certain number of days? this sounds fishy to me that they can legally begin an eval in january and not complete it till april - but I know the early childhood world runs a little differently.
i so hope your intuition has failed you this time, that she's not brewing an episode.
I hate that you have to jump through this array of hoops just to get that little girl the help she deserves.
Hopefully working through all this here, in this space, clears some room in your head for your studying.
Oh, little girl.
I'm sure you are, but are you positive about the insurance? I have bipolar disorder and have always been fine as long as there is no more than 30 days lapse between policies. In fact I started a new job today. My policy is good through the end of the month, then I'll do COBRA for a month and be on my new policy in April. I've been a bit stressed because I was just diagnosed with a crazy kidney problem and have been getting tons of testing that really can't wait 2 months. But I know I'll be fully covered.
I know Kaytar's situation is a bit different but I thought it was worth mentioning.
Well I'm glad that some of the issues have been cleared up since you first posted this. Maybe that released the pressure a bit in that brilliant brain of yours?
The insurance situation makes me sick. I'm so glad you have a pedi that is helping you work that out. Hope it all goes smoothly!
Good luck on your test!!
The insurance. Its so damn unfair. So wrong. You guys deserve every break available. It makes me so angry that you have to jump through flaming hoops like this.
And how on earth do you focus to study. you are incredible.
I love the sunny day photos of your son.
Oh that sucks that she has to have a gap in services! In California they aren't allowed to stop one service until the next one starts (to prevent these evals from halting things like this). Red tape bites the big one.
Sending prayers that it's not another ep...
Oh friend. Life can be so overwhelming sometimes can't it? I am praying for you today.
Can. not. speak. about. the. insurance. Too. effing. mad.
I hope an episode is not looming, but you will wonder and worry I imagine regardless. (HUGS)
I am SO GLAD the head thing is nothing.
I feel furious with powerlessness. I want to call and bug therapists...do something so you don't have the two months off now.
I wish I knew more about the inside of this.
Medical insurance is such a complicated thing. What you are going through isn't right. Not right at all :(
Thinking of you guys.
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