Wednesday, April 30, 2008

Hi. I'm Kyla from the paper.

There is something surreal about finding out you are in statewide newspapers before you have even had a chance to blog your own story!

Surreal.

So, yes. Yesterday, I did. I spoke at the Capitol in front of legislators and reporters. And I didn't die. The woman who was supposed to go first asked if I would go first, just to be sure "blood didn't start coming out of my ears or [I] didn't drop dead". Luckily for us both, that didn't happen. It was the most amazing experience. Everyone I had the pleasure of meeting was just wonderful. It was a good feeling to be surrounded by people who believe in the same things, everyone working together towards these very important changes. Everyone, even the Senator who was present, spoke with me afterwards, shook my hand, shook their heads at the injustice of it all, and told me I did well.

And today? I did it again, here in my town, in front of different cameras and our State Representatives. And as I introduced myself to someone, she said, "Oh! You're Kyla from the paper!" and that is how I discovered I made the paper today, not only our local paper, but papers all over our state. It is really quite overwhelming and amazing at the same time. The story is getting out there and that is what is important.

I can't thank you all enough for the support. Really, I don't think I could have ever done this without all of you standing behind me. So thank you.

Monday, April 28, 2008

The Speech

Hello, my name is Kyla [LastName] and on March 1st, 2008, my children became part of the 1.5 million uninsured Texas children. My daughter had been covered by the [Previous Insurance] Plan which closed its program at the end of February. When we discovered we would have to find alternate coverage, I optimistically assumed that HIPAA would protect her and we could simply move to another individual insurance plan. When we actually applied for this coverage, I discovered that wasn't the case. You see, KayTar is not a typical, healthy three year old. She has undiagnosed neurological attacks that are incapacitating and can last for up to 11 hours. She is deaf in one ear and has to have bi-annual hearing tests to be sure her hearing hasn't further deteriorated. In her short life, she has had two MRIs, two CT scans, two lumbar punctures, and three EEGs. Before losing her insurance coverage, she was in developmental, occupational, physical, and speech therapies because of her developmental delays. She sees a geneticist, neurologist, feeding disorders specialist, gastroenterologist, ophthalmologist, audiologist, otolaryngologist, her regular pediatrician, and was due to see an orthopedist prior to losing her insurance coverage. She has been in the ER six times for various issues. She has been hospitalized twice. She is on daily medications for chronic constipation and asthma. Although she is thriving in spite of it all, she is not the picture of a normal, healthy child, and she is too much of a risk for the insurance companies to accept. We were denied coverage. After being denied, we were referred to the High Risk Pool, which was created for children like KayTar, however, we are not eligible for this program because my husband's employer offers group coverage. Unfortunately for us, the group coverage is not an option either.


My husband's group plan would cost us 30% of our monthly income and we do not have 30% of our income to spare. On top of that, the insurance they offer is not comprehensive. None of KayTar's therapies are covered; none of her genetic appointments or tests, and many of the things that are covered have stringent limitations. KayTar's therapies alone cost over $400 per week. A single genetic blood test can cost well over $3,000. It does not make sense to pay over $900 per month on an insurance plan that will not cover necessary testing and treatment. Half of all working men and women do not have health insurance through their employer at all and many, like mine, cannot afford the coverage their employers offer. Because of this, KayTar has been without vital therapies and specialized medical care for two months. In that short amount of time, I’ve had to cancel her hearing test. I’ve had to cancel a crucial appointment with her feeding disorder specialist. A few months ago her feeding situation had declined so much so that we were beginning to discuss the possibility of a feeding tube, and now I cannot even take her in to see the specialist who can help her overcome these obstacles. If things were to decline further, we have no safety net. There are no treatments or therapeutic options for her without health insurance. We can’t even afford for her to be seen in the feeding clinic without insurance coverage. Due to recent changes in her neurological episodes, the pediatrician recommended another MRI, but that will also have to wait until we find a solution to our health care crisis. Since losing our insurance coverage just two short months ago, my daughter already lacks her necessary medical care, because we do not have access to affordable, comprehensive coverage. Can you imagine what it is like to choose between your financial responsibilities and your child’s health?

My husband has worked as a network administrator for the same banking system for over five years. He is a reliable employee; I can count the number of sick days he's taken on one hand. We pay our bills on time and take care of our taxes. We are financially responsible and more than willing to pay for our children's health coverage, this has never been the issue. The problem is that we don't have the option to do so. The only plan that will accept my daughter and offer her adequate coverage is the state CHIP plan. Unfortunately we are $260 dollars over the monthly income limit set for CHIP. Because we have no other viable options, my husband has requested a pay cut in that amount, so that our children can qualify for proper health coverage. Not only will this decrease our monthly income, it will also cap him out at work. He will no longer be eligible for raises or positional promotions. It shouldn't be this way; my husband should not have to handicap his career to provide for his children. Families who are willing and able to pay for adequate coverage should be allowed to do so, especially when the children have a serious need for comprehensive coverage.

This can be changed and our state leaders can change it. I speak for our family and families like ours when I say we are willing and able to pay for our coverage, we just need to be given a real opportunity to do so. All children deserve access to proper health care, regardless of their health status or income. If the CHIP program could be modified so that families like ours could pay into the system on a sliding scale to cover the cost of our children's care, it would go a long way toward bridging this very large gap. There are 487,000 children in Texas who are uninsured and above the CHIP income level cut off, let's work together to lower this number. Mohandas Gandhi said "We MUST be the change we want to see in this world." Today I stand before you and ask you to be the change my child desperately needs to see in this world. Do it for her, and the thousands like her. Do it because it is the right thing to do.


****

Tomorrow I'll be on my way before the sun comes up. EEK!

From the awesome files...

Josh was out of town all weekend and when he came home? He had a migraine and was worthless. I had a huge list of things that MUST BE ACCOMPLISHED ON SUNDAY WHEN JOSH GETS HOME and it just didn't happen. Sometime in the last two years I've morphed into this list-making, prioritizing, planning type person, and when it doesn't happen it makes me crazy. To be honest, I was totally pissed about that damn migraine. I mean, yes, poor Josh, indeed, I would not want to trade places with him. But the list of things to do was SHOUTING IN MY HEAD and the clock just kept spinning and the kids were cranky and all they wanted was their dad and the migraine was the bane of my existence. I'm pretty sure I did non-helpful things like wake him up and ask, "Are you SURE you can't take more medicine? SURE?!" and maybe also, "ARE YOU BETTER YET?! I HAVE THINGS TO DOOOOOO." Yes, petulant child, thy name is Kyla.

Eventually he started to feel better and I was able to go out and do one of the things on my list. One. I bought slacks for tomorrow. Two pairs actually, because I think the Universe was rewarding me for not physically dragging Josh out of bed, because I can never find slacks that fit properly. But I couldn't find a shirt, so I think that was the Universe punishing me for nagging at Josh when he was sick. It looks like I'm going to the press conference topless. I'm pretty sure that will get me on the news, though. Bonus.

Then last night as I turned over to fall asleep I muttered something about, "Did you remember to talk to your boss about taking the day off Tuesday?" to which Josh replied, "WHAT?! TAKE THE DAY OFF? WHAT ARE YOU TALKING ABOUT?" and I said, "Uhhhh, you know, when I asked if you and the kids wanted to come to the press conference, you said, 'No, I'll just keep the kids at home." which I interpreted as you would keep the kids at home. Are you kidding me?" When I turned over to look at his face, it was clear he was NOT joking, he had just misspoke during the original conversation. Niiice. Long, long story-about how people can only pay attention to what you actually say and not somehow magically know what you are thinking is different than what you are speaking-short, he is going to take the day off tomorrow as planned, but I'm really glad I happened to mention that last night or else we'd have had major problems tomorrow. Eek!

This morning BubTar asked me where I was going tomorrow, and I told him I was going to Austin to speak at the Capitol building in front of reporters and cameras and such and he said, "Sure, Mom. Whatever." and rolled his eyes. Awesome.

Saturday, April 26, 2008

1 day, 150 cards








Two chapters down, four to go.

Oh, and then the actual STUDYING part begins. Gotta love that.

Friday, April 25, 2008

Oh, it gets BETTER!

It is past midnight and I am wide awake. Wide awake.

Tonight I realized what the next two weeks of my life are going to look like and OH MY GOD. I've decided sleep is totally overrated.

Tomorrow I have a PowerPoint presentation due in English. THAT I HAVEN'T STARTED YET.

This weekend is busy with various weekend-type things. Semi-worthless, especially if KayTar keeps boycotting nap.

Monday, complete English and Philosophy assignments for the week, because there isn't any other time for it.

Tuesday, press conference day, followed by an evening of Anatomy class.

Wednesday, make up missed A&P exam.

Thursday, take A&P lab practical over material that is completely UNRELATED to the material I'll be tested on the day before.

Friday, KayTar's ARD meeting. Finally.

Saturday, collapse into an exhausted pile of misery, sob for a while, then study for A&P.

Sunday, see Saturday's agenda and repeat.

Monday, studying for Tuesday.

Tuesday, A&P final. Over new material that we started tonight. SIX CHAPTERS BETWEEN TODAY AND THE FINAL EXAM. SIX CHAPTERS OF NEUROLOGY! SIX! We have exactly one class period that isn't filled with testing between now and then, so I'll be teaching myself these glorious SIX CHAPTERS. And then memorizing them. Ugh.

Wednesday, Philosophy final.

That's as far as I know. I also have an English final that week, but I don't know the date yet. SUPER FUN!

And then, of course, I'll have to do the normal things, you know, breathing, maybe eating, possibly sleeping, and keeping my children clean, clothed, and fed.

On the upside, the press conference doesn't seem quite so daunting at the moment. It's more like, "Ooooh, 6 hours of child free time in a car I'm not driving. Perfect for studying!"

Any chance I can get my hands on Hermione's time changer? Somehow I doubt the one they sell on Amazon will be very effective. Drat.

Thursday, April 24, 2008

She's fine.

We went to the pediatrician yesterday afternoon to get a quick neurological exam done and it came back normal for KayTar. That just means everything was just right other than her wobbly, wide based gait, but that is an always thing for KayTar, not something caused by the episode. So YAY for that! The pediatrician did say she wants to have another MRI done once we get the insurance thing figured out, just to make sure things aren't changing in there. Yet another thing waiting for insurance. Joy.

I haven't brought her in post-episode since the very, very beginning, but this one was just so worrisome that I needed confirmation that she really was just fine. Watching your active 3 year old stay almost completely immobilized for 5-6 hours is kind of terrible, you know. She wouldn't even sit up to grab something that she really wanted that was directly in front of her. She just wasn't moving. Even though I know she's fine, it still gives me knots in my stomach to think about it all. She has regressed with her feeding several times following an episode, she lost three different sets of words in the beginning, and I just could not stop worrying that she had last her gross motor skills this time. She didn't and I am thrilled, but the worries and what-ifs still dance in my head and tie knots in my stomach.

****

So this press conference thing is happening. Like for real. I have been emailed my suggested talking points, the run of show (with my name on it! Exciting! Terrifying! I think I'll puke now!), and some other various information. I'll have 4 minutes to speak give or take, and then Q&A with the reporters. I think they've mistaken me for someone who knows what she's talking about!

Also, I just got a card from the woman who interviewed me a few weeks ago, she said that our story was accepted by the national office (!) and she'll keep me posted of publications.

This is what it feels like to enter the Twilight Zone, I think.

****

My professor missed class on Tuesday night due to his own family emergency and he agreed to let me take the test at a later time. So now I'm studying to maintain that information, while adding in the information for the upcoming lab practical. The lab practical, consequently, will likely be on Tuesday evening, which means I'll spend the day at the Capitol and then rush off to take an exam as soon as I get back to town. FUN!

****

Isn't awesome when all your irons are in the fire at once?

Worrisome neurological episode, check!
Press conference, check!
Major exams, two of them, CHECK CHECK!

****

This is what SIX looks like, in case you're wondering.

Tuesday, April 22, 2008

39. Yeah, I know.

Today, after taking the birthday boy out to his choice of lunch (Burger King? Seriously, BubTar?) we headed off to the Children's Museum for a day of fun. Turns out we didn't have any fun at all. KayTar went into an episode about 7 minutes after we arrived.

I felt like such an idiot, because when I woke up today "Episode" was not in my agenda nor in my mind at all. I was completely surprised by this one. I always kind of sense them coming, I know when to watch for them, I plan things close to home, I play it safe. I didn't do that today unfortunately.

It started out of the blue. She was fine one minute, walking and holding my hand, and then she said, "I need to carry you please." and I picked her up. She nuzzled into my neck and went limp. Even then it took me a minute to recognize what was happening, because it was so far from my mind today. I had to apologize to BubTar and tell him we had to leave immediately. On his birthday. Do you know what he said? "I'm sorry, KayTar. It's my fault we were at the museum, since it's my birthday."

*insert that shattering broken heart sound here*

I told him it wasn't his fault. KayTar just gets very sick sometimes and we have to stop what we're doing and get her home fast. He asked why and I told him her brain sort of malfunctions and it makes the rest of her body pretty sick. Then he said, "I'm sorry your brain malfunctions, KayTar." The boy is too sweet. Never mind it was ruining HIS special day, he was the one apologizing for things that have nothing to do with him.

We rushed home, and by rushed I mean spent over 30 minutes in traffic on the SAME STREET, and got home over an hour later. My mom came to the rescue and picked up the birthday boy and took him shopping at the toy store with his gift card. He bought 4 more Bionicles and finished building them all in the 3 hours he was at her house.

It has been a weird episode. No pain. No vomiting. No light sensitivity. Just the loss of her normal mental status and extreme lethargy. Oh, and the eyes. She's complaining about them and they have been moving like crazy. She'll only open her eyes for a few seconds at a time, but even when they are closed we can see her eyeballs swirling around back there. Here's the part that frightens me a bit, she's been lucid for an hour now, but she can't use her body. If I sit her up, she just slumps over. She can't sit, stand, crawl, none of those motor skills are intact. She can roll over, move her limbs, move her head, but nothing beyond that. It doesn't usually happen like this. Once she's back, she's BACK. I know that her history shows she always comes back from these, even if it takes a little longer than we'd like, but I can't help but worry that this time will be different because it IS different.

I'm supposed to be at school right now, taking my A&P exam, but instead I'm here because I can't bear to leave her like this. I sit close by and mark the time with the cycles of my worries and wonder when her little body will work again. I hope it is soon.


For the record, I really do think she'll come out of it all the way soon, she always does. It just makes me feel a little better to turn the worries into words, so I do.

ETA: She hasn't really come out of it, but she is asleep. She vomited not long ago and was able to sit up briefly for the bath, so that makes me feel better. I don't know if it is over or if she'll sleep for long, but I figured it was a good enough time to update. It has almost been 11 hours. I think that's the longest one yet. I hope she's better by morning. It has been really worrisome.

ETA again: It is morning and she seems to be totally back to herself. I might bring her in to the pediatrician for a quick neurological exam just to be sure everything is okay. This one really had me worrying.

Because Blogger is being dumb...

I was in the middle of working on a photo post for BubTar's birthday (6!) when Blogger decided that I was a cruel taskmaster and it was no longer going to stand for it. And it went on strike, with protest signs and everything. So until Blogger comes crawling back (and it always does), I give you this video of BubTar on his 4th birthday, singing his very first original composition. And yes. He did wear the tuxedo to Chuck E. Cheese that year.


"I'm looking cool, because I am.
I've got black shoes, because I do have black shoes...
Because I do have black shoes.
Because I play my GUITAR!"


When did that round faced lispy little guy turn into a BIG KID? Sigh. Everyone says it goes by so quickly, but honestly, most days feel exactly the same. Then you look back and realize that what feels like yesterday was actually ages ago. The days go slowly, but the years move way too fast.

Monday, April 21, 2008

Par-tay!

My Best Shot Monday


BubTar celebrated his SIXTH birthday this weekend, although his real birthday is not until tomorrow. We opted for the park rather than Chuck E. Cheese and it could not have gone more smoothly. It was a perfect day and the kids were free to run and play and the adults actually were able to have conversations! Shocking!

The birthday boy got enough building toys to keep him to keep him busy for six months or so I thought, but he proved me wrong by building all SEVEN Bionicles within the first 24 hours of their arrival. It was like he wasn't even here yesterday outside of the fact that he arrived at the table for meals and periodically called for help with snapping in some of the more difficult pieces. He's still got 2 boxes of Indiana Jones Lego sets, one big tub of Lego pieces and various building plans, a big tub of K'Nex, and a junior Erector set. I think he's hit building set Nirvana. The funny thing is, he's really just discovered this love of building. He was always the type of kid who didn't enjoy toys at all. He had plenty, but none of them saw any action until KayTar came along. She's big into play. Just since Christmas he has discovered that building is something he can do and do well, which is why I think he enjoys it so much. He's a bit of a perfectionist, so sitting down with a formless pile of bricks and an instruction book sets him up for success and he just loves it. He could do it all day and on days like yesterday he does! He also got some clothes (yes, from BORING mom and dad), some really cool books (click on that last link, it is what Julie's little P's picked out for him and might be the coolest book EVER, we've all had fun with it) and a couple gift cards, too. It was an embarrassment of riches to say the least.

We also had family come in from out of town for the party and spend the weekend with us, which why I have been gone from the Blogosphere. Secret blogging and all that. After the party on Saturday, we came home, unloaded the car, let KayTar take a tiny nap (and wake up on the WRONG side of the couch), and went over to my parent's house for swimming and dinner. It was EXHAUSTING. And then at 11pm when I was taking my shower I remembered I had an English quiz due before midnight and I almost cried, because all I wanted to do was pull on my jammies and fall into bed. Sigh. But, I made a 90 so it's all good, I suppose. I think I would have gotten a 100 if my eyes weren't bleeding from being so tired. ;) And that's what I did on my summer vacation this weekend.













The birthday boy says since he already celebrated his sixth birthday, on Tuesday he'll be turning seven. Riiiiiight. Gotta love that logic, though.

PS: Thanks for all the supportive comments on the last post. I'm so nervous I almost want to puke every time I think about it, but it is important and exciting and all the support calms my poor little nervous tummy. So, thanks a million.

Friday, April 18, 2008

I think Ghandi might have been onto something.

"Be the change you want to see in the world."
-Mahatma Ghandi


Would you like to hear something that is equal parts terror and excitement?

I've been asked to speak at a press conference at our State Capitol on the 29th.

And I said YES.

I'm terrified of public speaking, just thinking about it makes my stomach drop outside of my body and starts the room spinning. So why am I doing this?

"You may never know what results come of your action, but if you do nothing there will be no result"
-Mahatma Ghandi

Because I can. Because I should. Because I want to.

We aren't the only family in this situation. We aren't the only family who has fallen through the cracks, not the only family that sits right above the SCHIP income level with no other options, not the only family who has been denied coverage because of the bottom line. This terrible thing that has happened to our family is, unfortunately, not unique to us. Out of the 1.5 million uninsured children in our state alone, 487,000 of these children are above the SCHIP income guideline.

Do you know how much it costs our state to insure a child?

$40 per month.

Do you know the average cost for private family insurance in our state?

$900 per month. And in many cases, that $900 insurance does not even provide comprehensive coverage.

Is there something wrong with this?

Yes, of course there is.

Sadly, this situation is not unique to us, this specific problem affects 487,000 people in our state; however, the opportunity I have to bring attention to it is unique to us, to me, and it has the ability to affect change not only for our family, but for the 487,000 just like us. I have a story and a voice and an opportunity to use that voice, and I can't pass that up. I won't pass that up.

"The difference between what we do and what we are capable of doing would suffice to solve most of the world's problems" -Mahatma Ghandi

It's time to be the change.



Cross posted at MOMocrats.

Wednesday, April 16, 2008

Wordless Wednesday: Scary sense of fashion




(she calls the costume her "boob suit" because of the built-in pecs. no joke. as in, "where's my boobs, mom? need my boobs! my incredible boob suit!" crazy kiddo. and the skull is a case for her brother's pirate mega blocks. creepy, though, right? she growls at me from behind it and says, "i scared you me!" and dissolves into giggles. oh, and when i type in lowercase italics inside of parentheses, it totally doesn't count against the whole "wordless" thing.)


For more (actually) Wordless Wednesdays, click on over.

Tuesday, April 15, 2008

Unofficially.

Last Friday, we had the final portion of KayTar's autism evaluation. No really, the LAST portion. For real this time. I secretly think they want to adopt her as their mascot and that is why we keep getting called back. Afterwards, I asked if there was anything they could tell me before the reports were finalized. I haven't asked this before. I'm content to let them do their job, draw their own conclusions without my questioning and interference, but since it was the last time I'd see them before her ARD, I thought I might as well see what I could find out.

They said, unofficially of course, that they are not pursuing an ASD diagnosis for KayTar. Although she clearly exhibits a number of autistic behaviors, they are secondary to the overall neurological picture and until the neurological problems are diagnosed, they are reluctant to give her an ASD label. I completely agree with this reasoning, however, an ASD diagnosis would have been helpful in facilitating appropriate services. Bummer.

The SLP said that although she has significant speech delays, they are not the sort that are easily captured on the results of the diagnostic tests. She said KayTar is consistently testing at or above age level, which is wonderful, except that everyone agrees that there are significant speech problems and she needs therapy. It is just incredibly difficult to show this in black and white on a standardized evaluation form. KayTar's language delays are largely in pragmatics. I think the SLP might even be pursuing a diagnosis of Semantic-Pragmatic Disorder which is related to hyperlexia, SURPRISE! So, she is attempting to work this angle and use it to get KayTar the services she NEEDS, but nothing is for sure because KayTar's problems exist in a gray area, as always. You just can't put her into a nice little diagnostic box and the system thrives on tidy little boxes.

The problem is, KayTar doesn't ONLY need speech therapy. She needs occupational (for her sensory and feeding problems) and physical (for her tone and gait issues). I'm worried that she isn't going to be getting what she needs. Because the evaluation team is so thorough and have identified what she needs, they are really trying to manipulate the system so that it can help her, regardless of her out of the box status. There is something called an OHI (other health impaired) they are pursuing to help her qualify for services and appropriate placement. They sent the form to her neurologist who put "developmentally delayed" and sent it back, because for fear of the dreaded threat of "pre-existing conditions" and ridiculous insurance situation everyone has been told not to write anything specific on her paperwork. So in this situation, it was a terrible catch-22 that would have left her without services OR insurance. Dude. But I took the form to the pediatrician last week and I think that the information she gave will be adequate for the OHI. I hope.

So the bottom line is the story of our lives really. No one knows what's going on with our little dear. The fact that she has no diagnosis isn't just an inconvenience, it might just keep her from getting services that everyone agrees that she needs. She's an anomaly. She's brilliant. She's delayed. She's above age level. She's below age level. She can read from my textbooks. She can't relate simple experiences to me. We just don't know. Almost two years from the start of this and endless rounds of testing later, and we just don't know. I'd like to say it doesn't matter, that after this summer's debacle of having our hopes raised (I can't even look at that post without my stomach turning inside out) and dashed we had given up on ever discovering what the larger picture is for our sweet girl, and maybe we have. But I still think of it. Dream of it. Imagine what it might be like to know, really know. But I no longer expect it. She is who she is and I couldn't be more pleased with that, but the questions without answers circle in my mind sometimes. Who will she be in a year? In five? In ten? Will she continue to thrive? Will school be too hard for her? Are there more surprised up ahead? We just don't know. We know her, who she is today, who she was yesterday, and really, that is enough for us...but sometimes, times like this, I just wish we knew a little extra.

Last night, Josh and I were lying in bed watching Mystery Diagnosis. The woman had been to doctor after doctor and been told everything was fine, that the debilitating pain and lethargy was psychological, and finally they discovered she had Hashimoto's Thyroiditis. I said, "I hope she wrote letters to all those doctors and told them what they dismissed so carelessly." And Josh said, sarcastically, "Oh, like you did to IdiotPediatrician?" and I said, "If we ever get a diagnosis, I will. We'll be on this show and I'll send him a letter saying 'Please watch Mystery Diagnosis on such and such date, you'll be the idiot doctor I talk about in the beginning. Enjoy.'"

One day, I really hope I get to send that letter.

Monday, April 14, 2008

Ahh, memories.


It's a DOUBLE ear infection. Poor little dude.

Last night was a flashback to BubTar's baby days. Although he is the resident healthy kid around these parts, as a baby he had chronic ear infections. He never presented typically, though, his only symptoms were night waking and vomiting. The vomiting usually took place in OUR bed, as luck would have it. Oh, the sleepless nights! Oh, the laundry! Oh, the mattress scrubbing! Oh, the bad TV that is on at 3am while walking a cranky baby! Thankfully, he outgrew them right around his second birthday and this is the first one (or rather two) since then. We have not missed the ear infections. Not one bit.

Our dear son climbed into our bed around two in the morning, tossing and turning, crying out about both his ears. He couldn't get comfortable enough to sleep no matter what we tried, and it wasn't time for more medicine yet. So we accepted our defeat turned on the bedroom TV and let him watch cartoons until he could have more medicine and felt well enough to sleep. (Thank God for Noggin! And Boomerang! YAY FOR 24 HOURS OF CARTOONS!) It was a long night. Josh ended up fleeing to the sofa at some point, so he could get enough sleep for work today. And even after BubTar was ready to sleep, he kept trying to stick his hands and feet under me, or twirl my hair, or lay his head on top of mine, or roll his entire body over me, so that sleep flitted around me like a butterfly, never still long enough for me to grab hold of it. Did I mention it was a long night? Because, yes. It was. Just like the olden days.

Sleepless night, 2002. Courtesy of Otitis Media.

Saturday, April 12, 2008

GREAT!

As you might have noticed, we have a bit of a cycle in regards to seeing the doctor.

'Tar gets sick/has a well check.
'Tar picks up new germ at the doctor.
'Tar gets sick.
'Tar goes to the doctor.
'Tar picks up a new germ at the doctor.
And so on.

Every time we have one doctor's visit, we have many.

That might explain why I was a wee bit nervous about making an appointment this week for a healthy KayTar. Although she is healthy, she's been having coughing fits and having to use her inhaler much more often than she should and needed to go in for a listen. I told our pediatrician I was a little nervous about bringing her in for this reason, and she told me the slowest times in the office, so we'd likely get in and out. She told me that if there was a wait, we could spend it in her office rather than the waiting room. Fortunately, when we arrived, there was a room ready for us. Not only was the room ready for us, it had been unused so that there were no errant germs. The pediatrician came in an assured me she has just scrubbed her hands and all the instruments had been cleaned. We were so very careful, and in and out like lightening. (the verdict was that KayTar is having prolonged expiration and needs to add an inhaled steroid to her regimen)

So imagine my dismay when I get home from a brief shopping trip to find BubTar complaining about his ear. He asked me to clean it and told me he had already tried pouring water in it to make it feel better (great! not!). I gently wiped the outer inside part with a q-tip and found green discharge. Ewww. I asked him if he wanted medicine and he said no, so I left it alone. Thirty minutes later he came up to me crying and begging for medicine. The kid HATES medicine. He hasn't had an ear infection since he was TWO! Of course he has one now, when we did everything possible to ensure we would NOT have multiple doctor's visits. He's had allergy-related drainage all week and I'm sure that was the catalyst, but still, I'd like to see the odds here.

Evidently, we'll be heading to the pediatrician yet again on Monday, unless this somehow resolves itself between now and then. Of course we will.

Friday, April 11, 2008

Quilts

My mother makes a special quilt for each of her grandkids. BubTar got his for his first birthday and KayTar got hers yesterday, although it is considered a late third birthday present. Her quilt is so full of her personality, I just love it. It has her favorite colors and favorite things, animals, letters, flowers, books, hats...all sort of good things. It turned out just right, as did BubTar's almost 5 years ago! (I can't believe he's nearly 6!) Without further ado, the quilts.

KayTar's:








BubTar's:




And a old, terrible quality photo of wee little BubTar and his quilt.



PS: KayTar saw my post and said, "My new BLANKEY! That's AWESOME!" She cracks me up. Then she added, "Look at KayTar, she's a QUEEN." Indeed.

Thursday, April 10, 2008

Moments

Yesterday I got a note from a parent of one of BubTar's classmates. A girl classmate. Inviting him to an impromptu birthday lunch at the local Chuck E. Cheese today. It isn't really a party, just lunch with a few of her friends, and BubTar was invited. After we were done discussing the lunch date, BubTar was quiet for a bit. Then he piped up, "Mom, you know my cheeks turn red when I look at [girl classmate's name]." I worked REALLY hard not to giggle (because let's face it, could that even be more adorable?) and I said, "Oh really?" And then he blurted out, "ButIdon'tloveher!"

****

Yesterday KayTar pulled cotton from the end of a Q-tip and stuck it to her upper lip (like a white mustache) and said, "I'm old!" then she took it off and said, "I'm new!"

Logical, isn't she?

****

BubTar received his first friend phone call last night. From a DIFFERENT little girl in his class. Little kids on the phone are so funny, they look just like miniature teenagers. Josh asked me where the little girl got our number. We sent birthday invites home this week with our number on it for RSVPing. I guess we can expect more phone calls. After he was off the phone, I asked what they talked about. He said, "You know (yes, he starts almost every sentence with "you know"), my birthday, [other girl classmate]'s birthday. Stuff." I prodded, "Anything else?" He was clearly put out by this and sighed, "Just stuff, Mom. I don't know." Evidently he SOUNDS like a miniature teenager, too.

****

Every day when I study, KayTar sits next to me at the big table. She grumbles under her breath about "doing my work" and demands various colors of note cards.

"KayTar, don't you want to go play blocks? Or puzzles? Or with your dollhouse?"
"No. Just doing MY work. Purple card?"
"You already have a purple, just use that one. (yes, I sort of hoard my note cards)
"Nooo. TWO purples. More purple. MORE PURPLE."
"Okay. One more purple."
"Fanks. Weave you awone. (leave me alone) Doing MY work."
If I keep trying to engage her, she says, "Stop talking! I not wistenining (listening) to you! Just WORKING."

Occasionally, when she gets to a break in her work, she points to words in my textbook and says, "Say 'What does that say?'" So I do, and usually, she reads it, regardless of the fact that I happen to be studying a college level anatomy text and that words like endocrine and thyroid aren't typical fare for the three year old set.



PS: When you think everyone has stopped reading your blog because you've only gotten a handful of comments in as many days and you're wondering if you somehow said something offensive in one of your posts...it's probably a good idea to check your spam folder, because it might be overzealously eating ALL of your comments and discovering all those backlogged comments will be a little like Christmas day...or some other day when you discover that everyone doesn't really hate you. You know, in case that ever happens to you. This is purely hypothetical, of course.

Wednesday, April 09, 2008

Wordless Wednesday: Home Run!



Click here for more Wordless Wednesdays!

Monday, April 07, 2008

Raindrops

We are reading the Velveteen Rabbit. She touches the rabbit's face with her wee finger and says "Oh, he's got rain on the face."

****

We're in her autism evaluation and the SLP is having her name picture cards for pronunciation purposes. She is doing well, typically three, I think. At one point she impresses us all by calling a ring an "emerald". Fancy. Then they get to a photo of a girl crying and she says "Dat's a girl!" The therapist asks, "Is she happy or sad?" No response. The therapist prompts, "Is she crying?" KayTar makes some jargoning noises and then looks around the room. The therapist taps the page on the tears. "Oh, dat's wet. Water." The therapist says "She's crying. Do you think she feel sad?" Jargon again. Then nothing. The therapist says, "That's so interesting. She is so engaged and responsive until you bring up emotions and then she's got nothing. You just hit a wall and then she turns into a deer in the headlights. Interesting."

****

"No KayTar, those are tears. Tears on the bunny's face. Bunny feels sad. Bunny is crying." She says, "No. RAIN. Rain on the face. It's wet."

****

She's crying.
"KayTar, are you crying?"
"Yeah, crying."
"Do you feel happy or sad?"
"Sad."

****

I wonder what they see, what their tests will show. I wonder what it means. I wonder why emotions are so foreign to her. I wonder why she can't translate them from herself to others. They cannot be weighed and measured. They are not reasonable. Maybe that's it. You can't memorize the ephemeral. You can't regurgitate it. It isn't knowledge to be acquired, it is an innate understanding that grows with time. But to grow, there has to first be a seed. Does she have that seed, I wonder, buried beneath the soil of her soul? Some days I think I see a tiny sprig of green peeking out, but it disappears beneath the soil before I'm even sure of what I saw. One day will it really sprout and grow? Will it stretch it's green leaves to the sun, nourished by the rain from a loved one's face, and finally bloom into the beautiful flower it is meant to be?

Saturday, April 05, 2008

Yes, indeed.

At the evaluation, the SLP showed KayTar a picture of a vacuum and asked her to identify it.

KayTar said, "Dat's a vacuum."

The SLP asked, "Does Mommy have a vacuum?"

KayTar said, "No! Daddy! Daddy has a vacuum!"

The SLP laughed and said, "Oh, I like that even better."

So do I. So do I.


Arg. This little matey knows who swabs the decks 'round here.

Friday, April 04, 2008

Autobiography.












Six word autobiography: Yes, you can see my ID.

Thursday, April 03, 2008

I never thought

I'd be so happy about this.

Today, KayTar ate:

1 YoBaby
2 Stage 2 Sweet Potatoes

I remember a time when I was so tired of the darn baby food. All I wanted was for that endless stage to be over, but I always thought that once she was off the baby food, she's move on to real food. That clearly has not been the case. We've tried many times to reintroduce baby food, only to be rebuffed. Not today, though. SHE ATE IT! I am so glad the baby food is back. She had VEGETABLES! For the first time in months! HALLELUJAH!

Maybe it has something to do with the kicky boots?



I think so.

(Today is the final portion of the wee girl's autism evaluation, wish her luck!)

Tuesday, April 01, 2008

Where I'm not.

This morning, I'm supposed to be at an appointment with KayTar's feeding disorder specialist.

Guess what?

I'M NOT.

Why?

No insurance.

Like I said this weekend, there is a facility fee (RENT TO SIT THERE!) of $120 for a 1-2 hour appointment, most of which is not being spent actually seeing a doctor. On top of that, there is also a physicians fee of between $90-150, since we are returning patients. If we were new? It would be $200-300 to see the doctor. If the doctor were to choose to run tests? We're looking at another $200-$450.

So yeah. We rescheduled for the first available, JULY. Hopefully we'll be insured by then.

I rescheduled, not because she doesn't need it. Oh, how she needs it. But because financially it isn't a wise move and I know that in 3 months, we'll be in this very same boat anyway. Her weight is maintaining, so it isn't urgent. Pediasure suits her just fine. But if we ever want to have hope of getting past this, KayTar will need to see this specialist AND restart her OT. Neither is possible until we are insured.

Yesterday she ate:

One bite of chicken
One Oreo inside (just the cream)
Two fries
Three bites of guacamole

Every day seems to be variations of the same. Chips are usually a hit, we can usually get her to eat a serving of chips a day, but nothing is for sure. And even so, CHIPS? As a sole food? Not good. Even foods she really enjoys, she won't eat reliably. She eats something really well once, and it is a week or two or four before she eats it like that again. We've been treading these waters for 3 months now, and honestly, even with the appetite stimulant, there is no end in sight.

I'm so very thankful for Pediasure and her trusty bottles, because without that magical combination buoying her weight and health, we'd be in much more serious territory...maybe contemplating things like surgery at a time when we have no insurance. So for that, I am thankful. I'm thankful we are only having to decide against NEEDED treatment, rather than having to decide against CRITICAL treatment. But honestly? No one should ever have to choose between their health and their finances in any way, big or small. Sadly, it happens thousands of times every day right here in the wealthiest country on earth. And still, as a society, we approve of this, we think of health as a privilege, as something only the wealthy or insured deserve...that if someone is neither of those, they should just try harder. America, the land where anyone can pull themselves up by the bootstraps, where if you catch a tough break it is no one's fault but your own. America, where it can't be the system that is broken...no, it must be the people that are broken.

Photographic summary of KayTar's relationship with food. Entitled "How This Pains Me".