I sit down to write and I think about insurance, because, really, I'm thinking about it all the time. I watched John Q this weekend (good decision, right?) and I found myself talking to the TV (good sign, right?), because believe it or not there are MORE uninsured people now than there were when it was made. Hilary was in the news clips they showed, way ahead of her time. It was a little trippy. When I saw it in 2002, still pregnant with BubTar, I'm sure I never imagined a future in which we'd be part of those statistics. Strange. The subject seems to be a sort of mental block for me, creating an inability to write about much else. Insurance, blah, blah, terrible, blah. Head. Exploding. Repeat.
Since that is out of the way, let's move on.
In the past week, KayTar has learned to take off her shirt and pants! When we had the Big Eval, the only thing she could take off was socks and shoes, but in just a few weeks she has learned to undress! She also learned how to put pants on all by herself, too! She's only put them on once, but I was TOTALLY shocked! I think shirts will take longer because she is terrified of putting shirts on. She screams until her head finally pops out of the hole, so it isn't really the kind of task she looks forward to doing. She seems to be finally, finally hitting that stage of "do it all byself", which can be a pain, I know...but for her it marks real growth and it is exciting. And OH! last night she stepped up a tiny step on her own! The step was maybe 1.5 inches off the ground, but she did it all by herself without holding on or even asking for help. That is a first! An inch and a half doesn't seem like much, but she's never done that before, so that 1.5 inches might as well have been a mountain to her. We're seeing a lot of exciting new things.
As far as eating goes....sigh. You get what you ask for sometimes. I think our exact plea was "Eat something! Anything!" And the ONLY foods she has been eating for weeks now are chips and Oreos. Healthy, right? But since it is the only thing she'll eat, what do we do? The next thing I'm trying is apple chips, to see how that goes. If it works, maybe we'll just start dehydrating whole foods for her. Of course, as soon as we do, the obsession won't be chips anymore, because that is how this all works. She's still getting ACTUAL nutrition from Pediasure, so I'm not too worried about that. But the medication is creating an appetite, at least. That is the goal, creating hunger and giving positive food experiences, so mission accomplished.
Last week she went to speech therapy all on her own! I waited in the waiting room while she went with her SLP. I had a bad case of mybabyisgrowingup-itis. She's going to be three this week! And she's going to start school somewhere in the near future! And she went back to ST all on her own! The therapist wanted to work on her ability to tell me things, which I appreciate, because it is probably my single biggest worry in sending her to school. Tattling is an important skill when you think about it. She can't tell her teachers "He hit me." or "I fell down." She can't tell me "My teacher made me sad today." or "My friend was mean." It is worrisome to send her to school without that skill set. When she came out, she showed me a Valentine's card she made me and the therapist prompted her to tell me things. The therapist said, "I had her stick her finger into a cheesecake bite and she licked it. The second time she stuck her finger in, she started screaming and screaming, I'm sure you know all about that, and we had to take it out of the room." Oh yeah, we know all about that unfortunately. Later, at home, when I was prompting her to tell Josh about making the card, I asked, "What did you make it with?" and she said, "Glue!" And I thought it was totally BRILLIANT, because she wasn't scripting (to my knowledge) and it was a really specific answer. I was expecting her to answer "Hearts." like she had earlier in the day. She knocked my socks off with that answer!
I'm sad we are having to give up her private therapies. I think they are such an asset and both therapists are really working on important goals with her. We are seeing such growth in her right now that I think it is a point where she would be very open to the goals in her therapies. I wish we had more time with it. It feels irresponsible to allow her to be without therapy, even for a short time (until the district gets things together) when she is clearly excited and ready for it. She asks to go to therapy these days. "Go-a ferapy? Go-a school? Go-a ferapy a-day, YES MOM. YEEEEEEES." which is such a change from a few months ago when she was fake calling them on the phone and saying "No ferapy a-day. BYE!" I think we're going to see if there is a way to keep her in these two, at least until the district is ready. We'll see.
Post-script: As far as insurance goes, our (amazing and appalled) pediatrician referred us to our state board of insurance, because she doesn't think it is legal for KayTar to be denied coverage. I'm contacting them today and if I find anything out, I'll definitely make it known. I hope there is an answer waiting for us. Oh, and Josh spoke with HR about the possibility for a pay cut. The lady was completely shocked and had to refer the question to higher-ups because this is a first. Aren't we lucky to be the first? We're still waiting to hear if it is even a possibility.
Now Kyla, you can't really be surprised you guys are the first can you ;)
My thought are with you and the amazing Kaytar!
Kyla...I really hope that your ped can figure something out. I'm glad s/he is trying! Keep us posted.
I had to laugh with your chips and oreo comment. When A was little she lived on mint choc chip ice cream for months. The peditrican kept telling not to worry at least she was eating something.
Have you checked with your local Easter Seals to see if you can get the private therapy through them.
Your pediatrician sounds great - I hope that the insurance company listens to him.
I hope, hope, hope something can be figured out, I really do. You know I can so sympathize and feel angry about all this.
We had to give up OT for L. because we just can't afford $40/week for him to go. It sucks. It was the one thing we've done with/for him that felt like it was making a difference. We're keeping our fingers crossed that at our next IEP meeting tomorrow we'll find out he qualifies for OT at school.
Kyla, my stomach flipped and flopped unhappily reading this. I hope the state board can help with that. I hope you get coverage. I hope her therapies continue. This progress is awesome! An unscripted answer, doing her clothes, even sticking one finger in cheesecake and trying before rejecting the second time.
I'm glad you wrote out your melancholy even if you didn't post it.
I feel for ya Kyla, I really do. I haven't posted much about my experience because I didn't want to act like I understand what you are going through, which I don't. But I do know that I have had to make some very disturbing decisions about having Clara's evaluations done and say, paying bills, and we have insurance. Granted, we are self-employed, and our insurance is very expensive for a family of six, even with minimal coverage, but still...something is wrong with the system.
I have been praying for you each day and hoping you find a solution and some peace.
Oh and before I forget...GO KAYTAR! How wonderful that she had made such huge steps in so many areas.
Way to go Kaytar! I see what you mean about taking a break in therapy at the time of her having a developmental surge, but I'm sure your therapists can give you ideas of how to continue their goals at home. Kyla, you're so smart I bet you probably don't even need the suggestions. You're probably already doing it! She's doing so well and I'm sure it's only going to continue.
I love your pediatrician! I think it's amazing that she is getting involved at this level and I hope and pray that it makes a difference.
I hope you can keep the Speech Therapy going. It is just criminal to stop it like that, I'm so happy you have a doctor willing to fight with you. How sad you have to fight, for a program, that is clearly helping your child, at all.
Insurance companies...when are they going to be held accountable for the lives they harm?
kay-tar is astounding.
I hope your ped is right because the other option is just too ridiculous to be reality.
It was WEIRD not reading you for a couple of days. I was worried! This insurance issue is just such a heavy weight to worry about.
Great to read about Kaytars latest accomplishments.
Oh Kyla. I'm so happy for KayTar, getting her own pants on! And boo for insurance. Boo. Those recurring thoughts that block everything out, they're really hard, and I hope you get some peace from it all soon.
I really hope your ped can help you Kyla - it just turns my stomach what you have to go through...
I really hope your doctor is right.
Because the alternative options are so, so wrong. So incredibly wrong.
I sure hope Dr. H is right.
Everything you are going through with Kaytar has really made me think hard about what I truly believe regarding healthcare. Jeff and I have had many conversations about what needs to change so this doesn't happen to people like yall. Something is just so messed up when yall are willing to pay for coverage (the key being WILLING) and yet you are denied. That is just so wrong :(
I can't believe it might come down to a paycut :( I pray it doesn't.
Good luck with the State Board! Hopefully that's a new avenue that can offer some hope. I hope it means your hubby doesn't have to take a pay cut, which is just ridiculous.
Way to go KayTar! I know how it feels to have those little victories, which are really so very huge :)
good for your ped! good to see decent people in a messed up system!
I wish you didn't have to deal with all this cr#p with insurance. It isn't fair.
But horray for all the good stuff you listed. The small things add up to big things, you know! :)
i have been reading your blog for a while now and i am sorry to hear about all your problems.
i am german now living in the US and just had surgery...it is a shock for me to see 9and hear from oter people) how the health care system here works 9or doesn't work!).
by the way, my son is also turning 3 next week... on the 26th!
Yay for KayTar and her recent achievements! Hope the pedi will be able to help with the insurance fiasco!
KayTar is doing great!
I've got my fingers crossed for you, babe. And my toes and legs and arms and hair and eyes.
I am praying for you
Yay for Kaytar!
It's just so wrong that ya'll have to worry about insurance coverage and consider a pay cut to get covered.
I really hope ya'll get some good news about the insurance soon.
I wonder if bringing it to the attention of HR will produce results? I certainly hope so.
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