Happy anniversary, KayTar!

This is a very special anniversary for KayTar. This day last year was the day she finally, FINALLY walked, after 25 months of waiting.

She and BubTar were out on the trampoline, Josh was in the kitchen with the back door open, listening for the kids and keeping an eye on things, I was off doing something, I can't remember what.

Josh called me and said, "SHE JUST WALKED ACROSS THE TRAMPOLINE!" (I have to use caps because he was definitely speaking in all caps at the time)

I said, "Whatever, you liar. Stop joking around."

And he said, again with the caps, "NO REALLY! SHE DID! SHE DID IT!"

With that, the little squirt stood up and darted forward with a drunken, wobbly stumble. I nearly peed my pants as I darted to get my camera.

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And by that evening, she was doing it on solid ground, too.

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What can I say? At the time, it felt like the very best moment of my life. The miracle of my slumpy baby standing and walking, finally, was more than my heart could stand. It was amazing. It is definitely in the top 4 moments of all time, right up there with marrying Josh and seeing my babies for the first time. It has been a wild, wobbly year, complete with an ER trip on Mother's Day for a bit of dermabonding, but it has been miraculous to watch her grow and change and learn how to walk on her own two feet.

March 2007

March 2008

Spring Break: Part One

Last year BubTar's spring break was preempted by a hefty schedule of therapies for KayTar. This year she is without said therapies, so we are taking advantage of it and having a super fun break to make up for it.

Today was day one of Operation Make Up for Last Year's Crappy Spring Break and we went to Space Center. We were limited in what we could do because of the little 'Tar, but neither of them seemed to notice or care. Everyone had an excellent time and BubTar was sure to thank me for taking them somewhere so cool. He knows we are going somewhere else tomorrow, but I won't reveal the secret just yet (mostly because if I do, he won't stop talking about it for the next 24 hours).








And the very sweetest part of my day...



I will probably be a bit absent from the Blogosphere this week, since we have outings planned for each day. I'll still be posting (lightly), but my reading will probably take a bit of a hit. Try not to write anything too interesting in the next few days, okay? Thanks.

PS: I had a great time this weekend, I'll post a few photos once someone emails them to me...I was the dolt who forgot to bring a camera!

The morning after

She survived.

We survived.

We were up way too late. WAY TOO LATE.

Josh said, "KayTar! That was one of your best episodes yet!" I looked at him, fairly confused, as it was her longest episode in quite a while and the only one we've had to give her double doses of meds. He clarified, "Well, it wasn't THAT painful, and she's right back to normal. No more regressions." And that really is a win, because when your kid is still only eating maybe 3 chips a day or maybe on a really good week 1 veggie burger once a week, there really isn't THAT MUCH room for further regression. We're happy to keep our status quo.

It is done and the clock starts again.

Today, I'm going on a road trip with Julie and her tiny little mouse car, thoroughly pleased that the clock has been reset and I can put my worries aside again, at least for 73 days, I hope.

73.

We were at part two of her autism evaluation.

I was watching her play with the psychologist and then she stopped.

She looked up and she stopped responding.

She whined and rubbed her eyes.

I stopped breathing.

She looked at me and whined again, but then her eyes danced away.

She put her head on the table.

My heart raced.

"I think she's having one of her episodes."

We watched her, unsure, as always. Is this really it?

I heard people talking, "Did you see how eye contact completely changed?" "Yes, her whole demeanor changed."

I watched her, tried to engage her. She responded, weakly. She pointed at the toys, but she was too weak to even raise her head.

We left with promises of rescheduling.

As we walked to the car, she whined and retched.

I tried to ask her questions, reassure her. She tried to respond, but all that came out was gibberish, mumbles and groans.

The ride home was uneventful, a bit of groaning and moaning, more retching.

We walked in the house, I went for her medication.

After giving it, I put her in the sick seat.

She cried, vomited bile from her wee empty stomach, and fell asleep.

She's resting now, beside me in her sick seat, occasionally stirring and crying out, letting me know that she is about to vomit again.

I go to her quickly, hold her head over the basin and whisper soothing words to her. I don't know if she understands me or even hears me.

I worry and I wait, willing her to return to me, always hoping that this might be the last time I have to watch her slip away, the last time I have to watch her tiny body be wracked with pain* that threatens to swallow her whole, the last time I have to wonder if she truly will come back to me.


* Thankfully, this one is not that painful. She is resting comfortably in between bouts of illness, but I'm always worrying about the next time.

ETA: It's over. 8:45am-5pm. About 8 hours.

My kid IS weird

Today was part one of KayTar's autism evaluation through the district. I think I feel a bit differently about these little evaluations than a lot of other parents. Generally, people seem to be uncomfortable with the idea of their child be judged or graded for defects or deficits. Many parents shy away from labels and limits, they don't like to watch their children be scrutinized. But me? I love it, in a strange way. I love watching KayTar and the evaluators interact. I love listening to her answer questions (in sometimes hilarious ways, "Where do you sleep?" "IN A BOX!") or throw out her little quotes and watch the evaluators react ("This bowling ball is CHEAP!"). I love the way she always, always gets them to smile and laugh (The SLP told me that if she had her at home she'd never stop smiling). I love the way she charms them. And honestly, I love having my suspicions confirmed.

KayTar is one hot mess of a puzzle, not only medically, but also behaviorally. She is not a neat and tidy package of anything. As her mother, I observe a great many things that the general public misses, even trained professionals miss these things if they don't interact with her for adequate periods of time. I'm constantly dissecting things, researching things, wondering about behaviors and patterns...my brain is always processing some little tidbit of information I've gleaned from her. It can be tiring and a little maddening, too, especially when so many other people miss it at first glance. But to sit in these meetings (which I am an observer for, not a participant) and see her do the same things for them and to watch them catch on to it, without me saying a word, is like one 4 hour long sigh of relief. They get it. They get her. They see the problem areas, the lack of understanding and comprehension, the inability to tell stories or join in socially, the way she tricks people with her speech, and so on. They know how she covers her deficits and they know how to get her to expose the problems. It is an amazing process to witness.

She did a great job today, she was exactly herself. She did well at the things she does well at (above age level for quite a bit of stuff) and she showed deficits where deficits are. I never felt like she behaved out of character or failed to do something she really can do, which means it was successful. I won't know anything solid for quite a while. We go back on Friday for a "play test". Today was formal evaluation testing, the next session is more play based. Then there is the home visit, then the Big Meeting, which is when we should know. I did ask the SLP, "So, did you see what you expected to see?" and she said "Yes." So, I suppose that is a good thing. I'm anxious to get the results, not because I'm afraid of what they might say, labels tell you nothing you don't already know, but because I am so curious about what they'll categorize it as. I'm pretty sure they won't call it KayTarosis, but I think it has a nice ring to it.

69

First, if you are looking for my BSM, follow this little linky-loo over to my new photo blog! I've been playing around more with my photos and such and wanted a place to explore than without totally over taking this space (which I still desperately need), and thus, Photos from the Journey was born. Go take a peek if you have a chance!

Second, it is a Big Week here. We are on day 69 without an episode. 69 is the current heavyweight champ for days without an episode, so that means this is the week. Today, tomorrow, maybe in two days...but it is coming. This waiting is even MORE fun because tomorrow is her BIG AUTISM EVAL with the district. 8:30-12:30. 4 hours of evaluation. Of course, I'm worrying about having to cancel and miss out on this appointment slot, thereby keeping her out of school and services for the remainder of the year. On top of that one, we have a second, shorter evaluation on Friday. That is two days in which an episode would be bad news, not that they are ever good news. I am also planning on a super fun roadtrip this weekend with a friend, to see a couple of crazy Canadians, and I'll have a pretty hard time leaving if she hasn't had her episode yet. I think it would kill me to be a few hours from home when she was going through that. It doesn't matter how many she has had (28, if you're wondering) they always make my heart stop and then race uncontrollably. There is just something about watching your child slip from consciousness that you can never adjust to. The question is always, will she return to me?

Third, I have a phone interview with someone from the CDF this afternoon (it was rescheduled from last Friday). Dare I say it? I am hopeful that they might be able to help us with this horrid insurance situation. Regardless, this week I got my basic cardiac life support certification (because it looks purty on my resume) and I'm still putting in applications and hoping for call backs. In a few weeks, I'm going to take advanced cardiac life support (which looks even purtier on the resume) and I am really excited about it. I get to learn all the fancy life saving stuff in that course! I hope a solution finds us one way or another, even if it means I sleep a whole lot less for a while.

Uncovered Treasure

Look what we found hiding beneath our carpet!





I left for my BLS certification class yesterday with a carpeted bedroom and returned to beautiful hardwood floors. Very nice.

This guy...

would like to be interviewed, too, so please leave a question for BubTar in the comments. I'll record the interview and post it sometime next week.

Thanks!

Reader Rabbit

I recorded this yesterday and I figured it was time for some lighter fare around here.

In advance, I must apologize. There is a portion where she keeps saying "dinosaur's dinner" and I continually correct her. Guess what? I WAS WRONG. As soon as I put the camera down I saw where it said "dinosaur's dinner" (last two words of the summary paragraph) and I felt terrible. So, basically, she's smarter than me.

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PS: Last day to ask me questions! I'm going to be working on getting that post together, so lay them on me!

ETA: I kind of forgot my new readers might not know about this little ability of KayTar's. She's been reading since she was about 27 months...or at least that's when WE realized it. She might have been capable before then. It is called hyperlexia and we think it is probably caused by her processing differences, but it still knocks our socks off. If you want to see how we discovered it, you can look here and here and also click on the tag at the bottom marked reading.

I made someone cry yesterday.

Last night, at the end of anatomy lab, I was sitting with my new friend and helping her review the foot bones one last time when she asked me about KayTar. It wasn't out of the blue, I've mentioned KayTar a handful of times. I've made comments about shuffling her to and fro various places and I've given the short and sweet "She's got some medical and developmental needs." explanation. But last night she said, "So what exactly is going on with your daughter? Is it something genetic? Is she behind her age group?" And so I gave her the shortest version of it I could manage.

I told her no one is sure what is going on. She's delayed, but brilliant at the same time. I told her she can't run or jump or climb stairs, but she pulled one of my novels off the shelf the other night and sat down to read it. I told her she is deaf in one ear, and that she doesn't really eat. Pediasure is our best friend. I told her she didn't walk until she was over two and used to have the cutest red walker. I told her that KayTar's joints are too loose and her muscles are a bit floppy. I told her she has sensory processing problems, that innocuous stimuli is often misinterpreted as dangerous and offensive. I told her she has little lesions in her brain, areas of demyelinated tissue for unknown reasons, maybe a congenital virus. I told her she's had MRIs, CTs, LPs, EEGs, and probably most of the rest of the alphabet, too. I laughed. I told her she is doing well, though, thriving in spite of it all. She's come much farther than we ever thought. She's in therapies and it is making such a difference.

My friend said, "You must have amazing insurance coverage."

And I told her that we used to, but we just lost it. I explained why we couldn't find new coverage and her eyes filled with tears. She said, "You think you have it bad, and then you hear someone else's story..." I tried to make her feel better. I told her we're okay, really. Because we are. I said, things have been worse...at one point we had nasty possibilities on the table for KayTar. We thought it might be a tumor. Once we found the lesions, they thought leukodystrophy was a possibility. She's alive and she's thriving and everything else is gravy, I said. I told her the biggest hit was losing the private therapies...but at over $350 a week, we just can't continue them. But I told her we have some possibilities on the horizon and things might work out to get her back into therapy at low or no cost. She told me, "We just lost our coverage and my kids have asthma, sometimes they have attacks and the bill can be like $300, but it is nothing compared to what you guys are looking at." Her eyes were still red and wet, I think that mentioning the fact that in the early days we thought she might die wasn't as soothing as I thought. She said, "How old are you anyway, 24, right?" I said yes. She said, "I was 25 when I had my first baby and here you are taking care of all of this, and you've been doing it since 21, and even younger with your son? That's a lot." I agreed. It is a lot, but it is normal for me, for us. It just is what it is. The insurance thing sucks. But the rest? It's just life. And she really is thriving. It is amazing. If you met her, you might not even realize anything was different, save for her wee hearing aid. Again, I told her we are fine, because she still had those sad reddened eyes, moist with tears.

And then we reviewed the foot bones once more, because life just goes on.

Yesterday...

Yesterday, I woke up and look at my blank calendar and didn't know what to think. Do you know how long it has been since we had an entirely blank weekly calendar? There was one week in November of 2007 that was blank, and one week in October of 2006 that was blank, and before that was the last week of August in 2006. The week prior to her ECI evaluation. We have had only TWO blank weeks since then. Two empty weeks in the span of one year and six months. Two free weeks out of 78 of them. I don't know what to do with an empty week anymore. I wondered how many empty weeks might stretch out before us until KayTar once again has the services and care she needs.

Yesterday, I received a phone call from the school district. They can get us in earlier, next week actually, which is such a relief. This week I have a phone interview. Next week, KayTar has two additional evaluations (not to mention our social security meeting), and in two weeks, they are coming for a home visit.

Yesterday, I called our local university to inquire about their speech program. They are sending out a packet for completion. KayTar will likely qualify for their summer program, which means she might not have to be without services this summer.

Yesterday, I sent emails out regarding our insurance situation. Someone almost immediately replied from the CDF. If you'd like to see some interesting statistical data regarding uninsured kids, visit that link or the one on my sidebar. I don't know if anything will come from this, but what does trying hurt? If no one can help us, well then, things will just stay the same, but if someone can help us? Then it is worth the tiny effort of sending off some emails. They are calling me for a phone interview this week.

Yesterday, I completed an application for the Shriner's Hospital. I need to run it past our pediatrician before sending it and I'll likely call the hospital today to make sure they do see kids like KayTar (she is considered low needs in the orthopedic department), but I finished the application regardless.

Yesterday, I found a way to fill the blank space on the calendar...working to make sure that these empty spaces are only temporary. As much as I enjoy the down time, it means my sweet girl isn't getting everything she needs, and we just can't have that.



PS: I'm still accepting interview questions. ;)

Baby Redwood

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PS: There's another post from today down below!

On the last day of insurance...

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.

Thursday: Ophthalomology

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.

Well-child. Snort.

KayTar brought home a (feverish, snotty) souvenir from her well-child visit on Monday. Well-child visit. I think the name alone is enough to bring on the jinx.

We almost made it through February healthy. The shortest month of the year and we can't get through it with out spiking at least ONE fever. Sounds about right.

Studying with a 5 year old

Me (studying aloud):

Diaphysis, bone shaft.

Diaphysis, bone shaft.

Diaphysis, bone shaft.


BubTar (overhearing me, totally deadpan):

What about DIA-rrhea?

Ahhh, victory.

Last week, I studied my rear off in preparation for my Anatomy and Physiology lecture exam. I mean, I studied HARD. I ended up with a terribly sore neck and a really painful case of writer's cramp as well. I spent between 8 and 10 hours at the table that day studying. I wrote out 20 pages of notes front and back. I wrote out note cards. I tested myself over concepts and terms. I studied. And studied. The next day (test day) I had to spend the entire day at the hospital with KayTar for our specialist round up and spent a good portion of our time there memorizing my cards. The test was 100 questions and I flew through it. I knew the answers before even looking at the multiple choice options. I was in and out in 30 minutes and I knew I did well. The teacher's jaw dropped when I turned it in, and apparently after I left, he told the class, "Man! That girl just smoked through my test!"

But yesterday, when I looked up my grade online, it said I had an 86. 86?! No way. There was no way. I was shocked and fairly disappointed. I knew that material backwards and forwards and I shouldn't have made a B. I decided to talk to the teacher about it, because honestly, I was confident that I had done better than that. I'm really not that annoying student who ALWAYS thinks she's right...in fact, I largely keep my mouth shut in class...but this time, I really did think I was right. Sob, sob, wah, wah. I know. It was only a B. I'm ridiculous, but I knew I had a good grasp of the material, a better grasp than a B shows. When I got to class, I found out my grade was the second highest in the class. The professor offered to go over it with us in class because there were so many low grades (we're talking in the teens). In going over it, we discovered several errors in the grading key and I walked out of class with a 100 on that exam rather than an 86. Niiiiiice. And THAT was more like the grade I was expecting.

The moral of the story is there is nothing more satisfying than being right, except when being right also comes with a perfect score on a difficult exam.

There is a KayTar round up coming soon. Last week we saw genetics and neurology, Monday we saw the pediatrician, and tomorrow we see ophthalmology again (her left eye is drifting inwards). We're squeezing every drop we can out of this insurance before it is gone.

Little Boy Blue

My Best Shot Monday.



Coincidentally, BubTar, Josh, and my dad all wore the exact same shade of blue dress shirt to KayTar's birthday party. Do you think they called each other ahead of time to arrange it?

Big Party

One more birthday post and then, I'm done. Promise.

Last night was her big party, the one with extended family and cousins, and we had it at Chuck E. Cheese. It was a MAD HOUSE. Wow. We've done these parties many times before, it is always where BubTar wants his party, but last night was just not smooth sailing at all. KayTar had a blast though. She had grandparents at her beck and call, cousins to scream with, and ice cream and pizza to eat. From her point of view, it was a success. From mine? Well, let's just say my friends and I went out for drinks afterwards in lieu of coffee. And we ended up getting passes for free pizza, drinks, and tokens from the manager because of how poorly it was organized (on their end).

And then, as we were leaving, I kissed KayTar on the cheek and realized HER HEARING AID WAS GONE! Bye bye $2000! I freaked out. Josh was in front of me, leaving the building, and I called him but he didn't hear me. I went to find my mom and dad to ask them if they might have taken it off and put it in their pocket, they said no. I asked my sister the same thing. Nope. Then I really panicked. I talked to the manager and she notified their workers to look for it. My mom and dad retraced their steps. The kids crawled under tables to look for it. I went to tell Josh to wait for us. He was waiting in the front and I exclaimed with much feeling, I'm sure, "Oh my God, her hearing aid is GONE!" And he said, ever so calmly, "Nah, it is right here in my pocket." And then we called off the search party, but only after having what felt like several small heart attacks in a row. We also have a newly created Ifyoutakethehearingaidoffinpublicnotifytheotherparentimmediately rule to prevent future heart attacks.







When we got to the party, she said, "I find em! I find em-a party hats!"

The ice cream "cake".



Upon opening her clothes, she exclaimed, "Ooooh! Laundry! Fanks!" She cracks me up. She also received a stuffed unicorn, which she calls a "pony wif a party hat! Nnnneigh! Happy birthday!"

She had a blast, which really was the most important thing. And now all this birthday hoopla can be laid to rest. Look at that big three year old girl!

Little Party

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Hooray for birthdays!

My poor sweet THREE YEAR OLD woke up this morning and was sorely disappointed to find that this so-called birthday did NOT include party hats. In fact, her brother wasn't even home, what is THAT about? School on her very special day? This cannot be correct. It is a national holiday!

In fact, we had this conversation several times before she dissolved into the most pitiful sort weeping I have ever seen.

Her: BubTar is??

Me: BubTar is at school.

Her: No...BubTar is???

Me: At school. BubTar is at school.

Her: No! BubTar is????

And so forth.

For the hat dilemma, I googled "printable crowns" and we made due with this hat. Hooray for Google!



She was not a fan of the flash today, as you can tell from the face.

At one point, she hugged that silly little crown and said, "Oh, wittle fewwa, I love you hat. I so glad you here." Adorable.

We went to pick BubTar up from school and stopped by the toy store to let her choose her own toy in an attempt to salvage her poor disappointing morning, and because all she is getting from us this year is boring old clothes. We spent a good hour wandering around before she settled on one of those cheap balls from the big bins. A blue one. We happily marched towards the check out where she saw the courtesy phone. She WANTED the courtesy phone. BADLY. She went boneless and sobbed on the floor while I paid for her ball. Then she flailed and shrieked as we went to the car. It was so special and fun (except that it wasn't)!

The reason my poor child woke up to such a disappointing morning is that I have been entirely swamped for a couple days now. I spent all day and all night (minus eating and such) Wednesday studying. I did no chores. I did nothing, really, outside of studying. I had a wicked case of writer's cramp because unfortunately for my arm, I retain information best when I make myself write things out. I think I wrote 20 pages out front and back, along with accompanying note cards. Then Thursday we woke up and went to the hospital for KayTar's genetics and neurology appointments. We were there for 6 hours (thank God for the note cards, because I was able to study on the go!). I got home just in time to honk the horn for Josh to come retrieve KayTar from her car seat and rush to school for my exam. (oh, I so nailed it. NAILED IT!) Then I got home, tossed in a load of clothes so we all wouldn't be sans-clothing today and tried to relax. Unfortunately, although I've been very, very busy, life hasn't stopped. What is up with that? Everyone keeps right on dirtying clothes and living in the house and so forth and now I'm way behind. So my wee girlie woke up and was clearly disenchanted with the lack of birthday-esque hoopla. She's never had a birthday that she understood, and I didn't expect it and even if I had, well, the time just wasn't there. In any case, she had expectations that I clearly failed to meet. So I worked my rear off this afternoon to get a few things out of the way so that after nap time, she'll wake up to something a bit more exciting. Nothing major, we'll just have pizza (one of the foods she gets excited about, generally) for dinner and we'll let her open gifts from us. Tomorrow is her actual party (thankfully not at our house, because I surely don't need extra bodies to clean up after) and I daresay it is sure to be a hit this year. What a difference a year makes.



Oh, and my Bloglines is faithfully reminding me of just how LITTLE blog reading I've been doing lately. I'll be visiting sometime this weekend for sure. I'm still drowning in the to-do lists around here and so until I square a bit of that away, I've no time for reading. Responsibility. Bah.

Tomorrow at 4:56am,

This beautiful newborn baby...



This slumpy little one year old, who couldn't sit on her own yet...



This sweet two year old, who wasn't quite walking or talking yet...



Will be a big, beautiful three year old, who can sit and stand and walk and talk and read and undress and laugh and play and dance and twirl and do so much more than we ever thought she might.

Happy birthday, love!

Whatever gets you through today

I called the insurance board yesterday and spoke with someone.

I said, "My daughter's policy is being canceled and she is being denied for private insurance coverage."

She said, "So she has a pre-existing condition then?"

I said, "Yes, I suppose. Something like that."

She said, "Well, you can call the high risk pool--"

"We already did that. My husband's employer offers group coverage, but it is way out of the price range we can afford. They said even so, she couldn't be in the high risk pool."

"Oh, yes. That is correct. If you have group coverage available, they won't cover you."

"Do I have any other options to pursue?"

"No."

"Okay. I guess that's it then."

"Bye."

And then I hung up the phone, my eyes welling up with tears and my heart clenching in my chest.

I thought, I hoped, that somehow this would be the point of solution, that I would call and find I'd have misunderstood something along the way or that they would have a solution I hadn't heard of just waiting for me. It felt like the last unturned stone and once I lifted it, I would find what I have been searching for. Now there are no more stones to be turned. No answers just waiting to be found, we only have decisions waiting to be made. Decisions we'd rather not make. Pay cuts, second jobs, night jobs. If we choose the pay cut, Josh will technically be capped out at work. He will be unable to receive raises...by choice. That just makes me feel sick. A second job or a night job likely will not offer benefits, but it would help finance Josh's crappy work insurance. Josh's work insurance costs almost three times as much as the pay cut amount would be and the benefits are not early as comprehensive as SCHIP. A pay cut could financially handicap us...because if it makes things too tight, how can we rectify that? The alternative is that I could work nights on the nights I'm not in school or Josh could get a second job. The sacrifices there are sleep and Josh seeing the kids when they are actually awake. I don't know, really, what we'll do. There are no good choices to be made, but there are still choices to be made nonetheless.

Alright, enough of that. I have to go study for a 5 chapter A&P exam that we scarcely covered in class. He went over two entire chapters in one class period (last night) because he was in a hurry to get out the door to go hear Obama speak. As much as I like Obama and I would have wanted to get out of there, too, I wish he would have just pushed the test back one day and given the material the attention it needed. I feel totally unprepared. I could have skipped class last night and read my text and learned more than I did last night. So, I have two chapters to teach myself today and three more to review for the exam. Plus, KayTar woke up two hours early this morning, effectively eating up all the time I would have had to quietly work today until it is quiet once again at nap time. It is going to be FUN trying to study with a wide awake (and very cranky) two year old! And I won't have study time tomorrow because I have to take KayTar to the geneticist and that eats up roughly 6 hours or so. You WANT to be me right now, don't you? I know, I know. Try not to be jealous, though. ;)

PS: When you can't think of a title, just use the name of the song that happens to be playing when you hit publish. Handy!

[insert title here]

It is WEIRD not blogging for two days. I think NaBloPoMo reset my brain somehow and now I post every day or at least every other day...but skipping two days felt odd. To be honest, I wrote yesterday, I just didn't post it. It was all kinds of melancholy and I just didn't have the energy to hit post.

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.

I love this photo of her wee hand playing (what she calls) "Cheez-Its". Cracks me up. "Can I? Can I want to? Can I want to play CHEEZ-ITS?"

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.

Oh yeah, Valentine's Day...

I thought I was going to say it was a lovely day, but honestly, it was a really hard day with some nice moments stuck in here and there. Poor BubTar was SO excited to give me my gift, he was awake and sobbing at 3 in the morning, begging for it to be time already. We talked him into a big more sleeping but first thing after the sun peeked out, he was in my bed saying "Open it! Open it!" and I did. He bought me a Bionicle, which are his very favorite toys in the world. And yes, it really is mine, he didn't secretly buy it for me so that he could use it. He hasn't asked to borrow it once. He just wanted me to have something VERY special and to him, that toy is VERY special. He even ran right past his own gift to give me mine, because he is such a sweethearted boy.

The night before Josh and I put up streamers and blew up balloons so they kids would have something fun to wake up to. Last year we did this, too, but KayTar was really too small to notice it much. This year she was delighted to wake up to it all. She had such fun.

I had to go to school and take a lab practical that night, so Josh took the kids over to his parents for a little Valentine thing they were doing, and afterwards, he and I went out to the movies while my mom sat the kiddos. All day I had been in such a funk...this insurance stuff is eating my lunch, to be honest...and he kept kindly saying "Do you even want to go? We don't have to, you know. Really, we don't!" but I DID want to go...in fact, it was the only thing I wanted from the day, to slump into a dark movie theater seat, sip my drink, and turn my brain off entirely. I just didn't want to do ANYTHING else ALL DAY LONG, which was why I was in a bit of a unenthusiastic mood.

On the way, we discussed the insurance situation in increasingly frustrated and intense tones until I blurted out, "WELL THE WHOLE SITUATION IS SHITTY, JOSH." with perhaps a bit too much feeling (although I'm giving myself points for not using the f-word like I did in my head). He quietly said, "Are you upset?" And I said, "Well, you know, it all just sucks." and he said, "No...upset with me?" and I assured him I wasn't because, well, I wasn't. And he said, "Yeah, it all does suck." And then we changed the subject or turned up the radio or cracked a joke and sat together in the car with this buzzing frustration that had nothing to do with each other bouncing around us. It doesn't sound all that nice or romantic, but it was...knowing someone is on your team, agreeing about how shitty something is, sitting together and knowing you are thinking about the same terrible thing, can be a pretty nice Valentine's Day gift, really. Because maybe all day long you had just been waiting for the chance to belt out exactly how you felt about it all to someone who would look you in the eyes and understand exactly what you were feeling, and do nothing but nod his head and squeeze your hand. Maybe that coupled with the not-so-great movie and the cocktail made it just about the best date you could imagine on that particular day. Because when it comes down to it, love has nothing to do with boxes of chocolates or roses on some arbitrary calendar date, but it has everything to do with the honesty tucked into these everyday moments, the daily unspoken choices to move forward together, thankful for each other, even when things aren't easy.

And so it continues...

Thanks for your support yesterday. The Momocrats are continuing the healthcare discussion today and leaving our story at the top, so if you didn't get a chance to stop by yesterday, please do today. Also, below our story, there are many great posts on healthcare, take a few minutes and weigh in. This issue could not be more important to the 'Tars.

Also, we've been linked to at the Health Care Blog if you wouldn't mind following us over that way, again, I would be so appreciative.

And Canadians, if you'd like to weigh in, please do. One of the go-to arguments against universal care is the horror stories of year long (and longer) waits for doctor's visits and treatments. Stories about all the Canadians that migrate to America in search of our glorious healthcare. I know your system is not perfect and there are waits involved at times, but I do know that it is better than what we are experiencing here. It is helpful to hear that those of you with healthcare for all prefer it to the what is available to us in the States. That even with its flaws, you'd choose it again if given the opportunity.

This whole thing is kind of mind boggling, but if there is one thing I've learned this week, it is "Do not underestimate the power of the Blogosphere." Especially our little corner of it. I've never know so many supportive and amazing women. Thank you, thank you, for helping us out.

And hey for those of you who just check in for the cute kids...LOOK! CUTE KIDS! (I don't know what's up with BubTar's face, but I think it is a condition that comes with being 5.)



Bear with us, there might be more of this healthcare speak on the way...but it is so important and we're riding this wave as long as we can, not just for the little 'Tars, but for all the children that need these changes just as much as we do.

A change of scenery...

Please, follow these sweet little feet as they march over to Momocrats today. We're talking about--wait for it--INSURANCE. Surprising, I know. But until our words reach the right people, we can't stop speaking them.

jen, friend, thanks again for this opportunity.


My kids thank you, too.

Wordless Wednesday: B&W BubTar

More Wordless Wednesdays here.

[PS: There is a word-type post down below regarding insurance, with a smallish and mind boggling update.]

Just more of the same.

I talked to our insurance agent (who is a lovely and kind woman, from what I can tell) today. I asked her if I needed to disclose what specialists KayTar is seeing, even if it is for an undiagnosed condition. She said, yes, they would need that information on the application.

She said, "What specialists is she seeing and why?"

I skirted the issue a bit, "Well, like a neurologist and geneticist for some unresolved neurological concerns."

Then she said, "Kyla, do you guys have any other options?"

Yes and no. Yes and no.

Taking a pay cut to qualify for CHIP is our last resort.

She said, "Oh good. CHIP. That would take care of her for sure."

It is good that we have a fall back plan.

But it is bad that we have to contemplate taking a pay cut to get our child insurance.

It is bad that although we have the money to pay for insurance and are willing to do so, we might not have access to it.

It is bad that when an insurance company looks at her application, they will deny it because the amount they will have to pay out exceeds our premiums.

It is bad that kids like KayTar and their parents have to jump through these hoops just to make sure their children are protected.

It is bad that children are just dollar signs for these companies and that unfortunately, my little girl happens to have a negative sign next to her.

Then the agent said, "But you know, I've heard that to qualify for CHIP you have to be without insurance for three months before being accepted."

And that is bad, too.

It just shouldn't be this hard to protect something this precious.



Update: I had the agent look over our application once I had completed it and she said, "I am not hopeful for [KayTar]." Dude. When your insurance agent thinks you'll be denied, it is not a good sign. I asked her if it is even worth wasting the application fee if denial is a sure thing, but I'm waiting to hear back. I keep thinking that this can't really be happening, but it totally is. She will be without insurance in two weeks. Unbelievable. It kind of makes me feel like this:

Scary, right?

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. ;)