Must Unload.

[warning, this might be largely incoherent babbling mixed with high-pitched shrills]

Item 1: KayTar's Head

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:
Migraine/seizure disorder
Brain lesions
Developmental Delay
Feeding Disorder
Hypotonia
Hypermobile joints
Chronic Constipation
Hearing Loss

She's been sick with:
Bronchitis
Pneumonia
Strep (x5)
Viruses

She's been in the ER upwards of 5 times. She's be hospitalized.

She sees:
A feeding disorder specialist
GI
ENT
Audiology
Neurology
Genetics
Orthopedics (starting in March)

She needs:
Occupational therapy
Physical therapy
Speech therapy

She takes daily medication.

Not to mention the diagnostic tests:
2 MRIs
2 CTs
3 EEGs
2 LPs
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. ;)