Okay, not really, but I am taking a break from the bleakness of healthcare to brag a bit on the wee one. Bragging touches a nerve at times, so let me preface this by saying I know it is totally NOT normal at this age AND I am pretty certain it is tied to her unique little pattern of brain functioning. I've posted about this a couple of times before (all those links have videos of her doing her thing), but it has kind of reached a new level. Her reading vocabulary, which is now not only site words, has to be over 200 words. I know it sounds like an exaggeration, but our jaws drop DAILY from her reading something new. Her ability to retain these things is NOTHING we've cultured in her or worked with her on. When you say "My two year old is reading." the standard reply is "Well, we don't QUIZ OUR CHILD ON ACADEMICS." Well, neither do we. She just KNOWS this stuff. It is 100% her. We encourage it only because it is something she enjoys so much.
She's gone from words like stop, go, mom, dad, cat, dog, to words like work boots, library, bring, planet, adventure and so on. I wish I could remember some of the real jaw droppers, they are the ones that leave Josh and I slack-jawed in awe staring at each other. Words that I truly cannot place where she might have learned them in context. I really need to start writing them down, because she truly shocks us every day. She reads billboards out the car window. She lays down with me in the evenings when I read my novels and points to words and reads them to me. She reads words from the episode summaries that come up on the DVR menu. She lays with me looking at her own books, pointing out words and often sentences. She still doesn't understand the "rules". She doesn't consistently read left to right or top to bottom, but she is reading the words on the page. Not 100% of them, for sure, but a huge number. She attempts to sound new words out, too. When she learned library she said, "Yi. Buh. Rah. Eee." She says "Yi" because she can't articulate the L sound. I've heard her trying to sound out lots of words recently. It just so impressive. This is where she shines. She might not be able to jump or run or walk up stairs or hear with both ears or eat table foods consistently, but reading? That she understands. It blows my mind.
This video I took 5 minutes ago. I opened BubTar's riddle book from the library to a page we have NEVER read with KayTar and asked her to read it. This is the FIRST time I asked her to read it, I didn't even do a practice run before turning on the camera. I promise.
It might not be reading the Great American Novel, but maybe by Kinder, right? ;)
Tuesday, November 20, 2007
Monday, November 19, 2007
3...2...1....KABOOM!
I've spent my day on the phone with various insurance providers, searching for a solution to this problem. I spoke with several companies and provides before finally calling the High Risk Pool. This is the information I received.
There are three different plans, two that fit our budget perfectly.
They cover medical expenses and have reasonable co-pays, even for specialist visits.
They cover therapeutic needs, even past age 3.
They cover her on going hearing tests, although not her hearing aids. No big deal, we only got $500 from our current insurance to help with her aid. We can handle paying the full amount out of pocket when it comes time again.
I explained that she has no official diagnosis and asked about eligibility.
She said that if KayTar was either denied coverage previously or was accepted, with the exclusion of some of her needs she is eligible.
I have an email from the agency we used to apply for insurances stating that they cannot cover her therapeutic needs. I would just have to get that on their letterhead and we are in.
But then...
She asked, "Are you or your husband employed? Does his employer offer group coverage?"
Yes. He is. They do. And it sucks and costs your YEARLY DEDUCTIBLE every MONTH.
I asked, "If his group coverage does not cover some of her needs, can we still qualify?"
She put me on hold for a few minutes and came back with a voice filled with apologies. Any group coverage, ANY group coverage. Expensive, awful, worthless, ANY. Any group insurance is a deal breaker.
And so we have one less option. The one option that we thought might work the best.
It shouldn't be this hard.
There are three different plans, two that fit our budget perfectly.
They cover medical expenses and have reasonable co-pays, even for specialist visits.
They cover therapeutic needs, even past age 3.
They cover her on going hearing tests, although not her hearing aids. No big deal, we only got $500 from our current insurance to help with her aid. We can handle paying the full amount out of pocket when it comes time again.
I explained that she has no official diagnosis and asked about eligibility.
She said that if KayTar was either denied coverage previously or was accepted, with the exclusion of some of her needs she is eligible.
I have an email from the agency we used to apply for insurances stating that they cannot cover her therapeutic needs. I would just have to get that on their letterhead and we are in.
But then...
She asked, "Are you or your husband employed? Does his employer offer group coverage?"
Yes. He is. They do. And it sucks and costs your YEARLY DEDUCTIBLE every MONTH.
I asked, "If his group coverage does not cover some of her needs, can we still qualify?"
She put me on hold for a few minutes and came back with a voice filled with apologies. Any group coverage, ANY group coverage. Expensive, awful, worthless, ANY. Any group insurance is a deal breaker.
And so we have one less option. The one option that we thought might work the best.
It shouldn't be this hard.
Little foodie
A little over a week ago, KayTar was refusing food, except for yogurt. She was usually eating a single yogurt between the hours of 8am and 6pm. At 6pm, Josh would coerce her into trying something else, usually unsuccessfully. If it did work, she would eat two jars of baby food. She was subsisting on 4-12oz of food per day. Our nutritionist recommended backing off a bit, letting her call more of the shots when it comes to eating, so that is what I did. If she wanted A yogurt. I gave her A yogurt. We could always do Pediasure to make up for it, and KayTar wold be happy that she was allowed to make her own food decisions, hopefully saving us from adding "BATTLE" to the list of things that keep her from eating. Josh wasn't entirely keen on this idea, but I reminded him that usually a very poor week of eating is followed by a much better one. And then KayTar reminded him, because she went from that single yogurt to a pseudo-children's diet. I got to say, "See? I told you it would work itself out!" Even though I had no real idea of just how well it would work itself out.
A typical day that used to look like this:
1 Yogurt
Now looks like this (yesterday, for example):
Dry toast
Sausage (2-3 patties)
Yogurt (self-feeding!)
Chicken "muggets" (2-3)
Cheez-Its
2 jars of vegetables plus crushed vitamin
Chicken
Garlic mashed potatoes (3 adult spoonfuls!)
I am reluctant to post this, because we have been here before or at least CLOSE to here and seen it all go away. KayTar and food is a dance between advancement and regression. Next week, she might go back to not being hungry at all, or her sensory issues might have her back in the box-o-baby food. Or the episode that is due this week (since we are back on a lovely time schedule) might tear down the progress she has built up recently. I can't just enjoy it, because I know how precarious it is and if I get too used to it, I'll be even more disappointed if she loses it all. But right now, today, she is eating so well. Sometimes even instigating meals or asking for food. This is huge for a child who doesn't feel hunger usually. She could go for days without eating if left to her own devices, which is a huge part of our battle. If you never felt hungry, how would you feel about being forced to sit down and eat three times a day? Likely, you wouldn't be a fan, because you'd feel fine without it. It would just be a pointless chore without hunger or enjoyment, and sometimes it would even be scary or painful, depending on how it affects her senses on a particular day. It would be very difficult to like food if that were the case. But here she is, eating, although she is still very cautious about what is on the accepted list. It is hard not to be excited, even when I know how many times she's gained and lost in this area.
This video was taken right before her episode in September. That weekend she was eating ANYTHING and EVERYTHING offered to her. Diced veggies, hot dogs, dry cereal...she was just a normal kid for the weekend. It was sudden progress, she just woke up and was doing it. Then she has an episode that Sunday night and it was long gone. Like it had never happened at all, except for this video.
I think that weekend, the upcoming episode must have flipped some neurological off-switch on her sensory issues, because we've never had progress like that, not even now. She won't touch cereal or diced veggies or a hot dog; nothing small, nothing wet, nothing slimy. It went as suddenly as it came. But her current progress has more to do with her personal preferences, being careful not to offend her senses while experimenting with table foods, and letting her make decisions, so I hope this one sticks. I always hope. But looking down the barrel of the next episode has me wondering if we will be serving single yogurts again next week. I hope not. I hope this is the year that KayTar finally gets a bit of real Thanksgiving on her plate instead of pureed sweet potatoes and turkey with a jarred green bean chaser. Or a yogurt, for that matter. If she gets to enjoy Thanksgiving, then THAT is what I will be thankful for, even if it slips away the very next day.
A typical day that used to look like this:
1 Yogurt
Now looks like this (yesterday, for example):
Dry toast
Sausage (2-3 patties)
Yogurt (self-feeding!)
Chicken "muggets" (2-3)
Cheez-Its
2 jars of vegetables plus crushed vitamin
Chicken
Garlic mashed potatoes (3 adult spoonfuls!)
I am reluctant to post this, because we have been here before or at least CLOSE to here and seen it all go away. KayTar and food is a dance between advancement and regression. Next week, she might go back to not being hungry at all, or her sensory issues might have her back in the box-o-baby food. Or the episode that is due this week (since we are back on a lovely time schedule) might tear down the progress she has built up recently. I can't just enjoy it, because I know how precarious it is and if I get too used to it, I'll be even more disappointed if she loses it all. But right now, today, she is eating so well. Sometimes even instigating meals or asking for food. This is huge for a child who doesn't feel hunger usually. She could go for days without eating if left to her own devices, which is a huge part of our battle. If you never felt hungry, how would you feel about being forced to sit down and eat three times a day? Likely, you wouldn't be a fan, because you'd feel fine without it. It would just be a pointless chore without hunger or enjoyment, and sometimes it would even be scary or painful, depending on how it affects her senses on a particular day. It would be very difficult to like food if that were the case. But here she is, eating, although she is still very cautious about what is on the accepted list. It is hard not to be excited, even when I know how many times she's gained and lost in this area.
This video was taken right before her episode in September. That weekend she was eating ANYTHING and EVERYTHING offered to her. Diced veggies, hot dogs, dry cereal...she was just a normal kid for the weekend. It was sudden progress, she just woke up and was doing it. Then she has an episode that Sunday night and it was long gone. Like it had never happened at all, except for this video.
I think that weekend, the upcoming episode must have flipped some neurological off-switch on her sensory issues, because we've never had progress like that, not even now. She won't touch cereal or diced veggies or a hot dog; nothing small, nothing wet, nothing slimy. It went as suddenly as it came. But her current progress has more to do with her personal preferences, being careful not to offend her senses while experimenting with table foods, and letting her make decisions, so I hope this one sticks. I always hope. But looking down the barrel of the next episode has me wondering if we will be serving single yogurts again next week. I hope not. I hope this is the year that KayTar finally gets a bit of real Thanksgiving on her plate instead of pureed sweet potatoes and turkey with a jarred green bean chaser. Or a yogurt, for that matter. If she gets to enjoy Thanksgiving, then THAT is what I will be thankful for, even if it slips away the very next day.
Sunday, November 18, 2007
Soooo...
You know that feeling when there are are a fistful of posts dangling from the tree of your mind, but none of them is quite ripe yet? I have loads of ideas, but none of them are bubbling forth in the form of words. I never craft my posts. I don't work on them in advance or draft them and add to them. I just sit down and out they spill onto the screen, because it is just time for them to be born into the world. All that is to say, today I'm a bit stuck, and because it is NaBloPoMo I am playing through the pain.
I could talk about what I've learned about myself during this vacation or about the HUGE verbal progress KayTar has made recently. I could talk about how we are trying to wean BubTar off the constant habit of dissolving into tears over inconsequential (usually video game-related) things or about how in the last two weeks, KayTar has suddenly realized she is TWO and has been missing out on the whole "TERRIBLE" part and is wholeheartedly seeking to rectify that. I could talk about how I am being forced to eat more healthfully by my restricted diet and have been medically motivated to get a bit more exercise or about how this vacation from the medical world has been perfectly timed for all of us. I could talk about how KayTar was eating a single container of yogurt per day last week and this week finds her eating toast, nuggets, baby food, yogurt, Cheez-its, and more. Or about how KayTar is reading, reading, reading. Words, sentences, and more. Words she has no real business reading at age two, but still she does it. She read to me from my Jodi Picoult book yesterday. I could talk for ages about that. But I won't, because I can't seem to get it all to congeal into words yet. But there I will say this little break has been beautiful for us all.
But in lieu of all that actual content, I give you my personality test results, courtesy of my father. He works in the oil business as a safety guy. He has a big seminar or conference with Chevron coming up and they sent him out a fancy personality profiler test because they are using the results to arrange seating properly for the conference/seminar/whatever. Cool concept, I think. So this is what it says about me.
****
The Socializing Relater, The Helper
I am a low key, inclusive person who makes others feel comfortable and wanted. I fit into one of the two most naturally supportive styles. I am a natural conversationalist who both listens and expresses myself with ease. I seek positive relationships and enjoy being involved with different kinds of people in different situations. However, there are times when I enjoy being on my own, having time to think about why people are doing what they are doing.
I have a tendency to build esteem in others and I am always looking for opportunities to seek harmony both at home and at work. I sometimes lack assertiveness with others and play down my own personal needs.
I have an inherent sense of fun and enjoy seeing people happy. I do not like confrontation, arguments, or conflict.
My tendencies include:
* I empathize and project concern for others
* I become overly subjective about people I care about
* I am dependable, caring and responsible
* I listen to people's feelings and don't mind sharing my own
* I will show confidence and trust in people
* I prefer people oriented, positive work environments
* I like to hug and kiss those I love
My Potential Limiters:
With tasks: I would benefit by learning when and how to take charge of a situation. I sometimes find myself procrastinating, waiting for others to provide direction. To be highly competitive, I need some coaching on assertiveness.
With people: Because I have strong people needs and a desire to please others, I can become exhausted by striving to meet their demands. I must learn how to say no. I also have difficulty dealing with conflict, because when people express displeasure or disagreement, I tend to interpret it as personal rejection.
* I should become more assertive about my personal needs
* I need to learn conflict resolution and negotiation skills
* I need training or coaching on how to set priorities, manage resources and monitor tasks
* I should find a method to satisfy my need to know how people really feel about me
****
I think it pegged me pretty well, actually. I wish that it was an online test, because then I could find out how many of you fine folks would be seated next to me at this hypothetical conference. I'll settle for knowing how many of think you'd fall into the same profile, though. These things always pique my interest.
Be back tomorrow...with a bit more to say, I hope!
Finally starting to look like fall here!
I could talk about what I've learned about myself during this vacation or about the HUGE verbal progress KayTar has made recently. I could talk about how we are trying to wean BubTar off the constant habit of dissolving into tears over inconsequential (usually video game-related) things or about how in the last two weeks, KayTar has suddenly realized she is TWO and has been missing out on the whole "TERRIBLE" part and is wholeheartedly seeking to rectify that. I could talk about how I am being forced to eat more healthfully by my restricted diet and have been medically motivated to get a bit more exercise or about how this vacation from the medical world has been perfectly timed for all of us. I could talk about how KayTar was eating a single container of yogurt per day last week and this week finds her eating toast, nuggets, baby food, yogurt, Cheez-its, and more. Or about how KayTar is reading, reading, reading. Words, sentences, and more. Words she has no real business reading at age two, but still she does it. She read to me from my Jodi Picoult book yesterday. I could talk for ages about that. But I won't, because I can't seem to get it all to congeal into words yet. But there I will say this little break has been beautiful for us all.
But in lieu of all that actual content, I give you my personality test results, courtesy of my father. He works in the oil business as a safety guy. He has a big seminar or conference with Chevron coming up and they sent him out a fancy personality profiler test because they are using the results to arrange seating properly for the conference/seminar/whatever. Cool concept, I think. So this is what it says about me.
****
The Socializing Relater, The Helper
I am a low key, inclusive person who makes others feel comfortable and wanted. I fit into one of the two most naturally supportive styles. I am a natural conversationalist who both listens and expresses myself with ease. I seek positive relationships and enjoy being involved with different kinds of people in different situations. However, there are times when I enjoy being on my own, having time to think about why people are doing what they are doing.
I have a tendency to build esteem in others and I am always looking for opportunities to seek harmony both at home and at work. I sometimes lack assertiveness with others and play down my own personal needs.
I have an inherent sense of fun and enjoy seeing people happy. I do not like confrontation, arguments, or conflict.
My tendencies include:
* I empathize and project concern for others
* I become overly subjective about people I care about
* I am dependable, caring and responsible
* I listen to people's feelings and don't mind sharing my own
* I will show confidence and trust in people
* I prefer people oriented, positive work environments
* I like to hug and kiss those I love
My Potential Limiters:
With tasks: I would benefit by learning when and how to take charge of a situation. I sometimes find myself procrastinating, waiting for others to provide direction. To be highly competitive, I need some coaching on assertiveness.
With people: Because I have strong people needs and a desire to please others, I can become exhausted by striving to meet their demands. I must learn how to say no. I also have difficulty dealing with conflict, because when people express displeasure or disagreement, I tend to interpret it as personal rejection.
* I should become more assertive about my personal needs
* I need to learn conflict resolution and negotiation skills
* I need training or coaching on how to set priorities, manage resources and monitor tasks
* I should find a method to satisfy my need to know how people really feel about me
****
I think it pegged me pretty well, actually. I wish that it was an online test, because then I could find out how many of you fine folks would be seated next to me at this hypothetical conference. I'll settle for knowing how many of think you'd fall into the same profile, though. These things always pique my interest.
Be back tomorrow...with a bit more to say, I hope!
Saturday, November 17, 2007
A Song for Saturday instead
all around me are familiar faces
worn out places
worn out faces
bright and early for the daily races
going no where
going no where
their tears are filling up their glasses
no expression
no expression
hide my head i wanna drown my sorrow
no tomorrow
no tomorrow
and i find i kind of funny
i find it kind of sad
the dreams in which i'm dying are the best i've ever had
i find it hard to tell you
i find it hard to take
when people run in circles its a very very
mad world
mad world
children waiting for the day they feel good
happy birthday
happy birthday
and i feel the way that every child should
sit and listen
sit and listen
went to school and i was very nervous
no one knew me
no one knew me
hello teacher tell me what's my lesson
look right through me
look right through me
and i find i kind of funny
i find it kind of sad
the dreams in which i'm dying are the best i've ever had
i find it hard to tell you
i find it hard to take
when people run in circles its a very very
mad world
mad world
enlarging your world
mad world
- Mad World, Gary Jules (cover of Tears for Fears)
Because sometimes it is, isn't it?
worn out places
worn out faces
bright and early for the daily races
going no where
going no where
their tears are filling up their glasses
no expression
no expression
hide my head i wanna drown my sorrow
no tomorrow
no tomorrow
and i find i kind of funny
i find it kind of sad
the dreams in which i'm dying are the best i've ever had
i find it hard to tell you
i find it hard to take
when people run in circles its a very very
mad world
mad world
children waiting for the day they feel good
happy birthday
happy birthday
and i feel the way that every child should
sit and listen
sit and listen
went to school and i was very nervous
no one knew me
no one knew me
hello teacher tell me what's my lesson
look right through me
look right through me
and i find i kind of funny
i find it kind of sad
the dreams in which i'm dying are the best i've ever had
i find it hard to tell you
i find it hard to take
when people run in circles its a very very
mad world
mad world
enlarging your world
mad world
- Mad World, Gary Jules (cover of Tears for Fears)
Because sometimes it is, isn't it?
Friday, November 16, 2007
For Janet
So this one time, I met Jean Chrétien, too. See?
We were on our way out to lunch in this photo. He wanted to take me somewhere fancy, but I said, "No Jean! No need for all of that. The nearest candy store will be fine. I would like an appetizer of Coffee Crisp, an entree of KitKat Chunky, and a platter of Smarties for dessert." And he happily obliged. Such fond memories I have of that day. Sigh.
ETA: NEWS FLASH! Evidently it was Paul Martin and HE LIED TO ME. He totally said he was Jean. And I'm just a little ole American with candy colored stars in her eyes, how was I supposed to know it wasn't really Jean?! The candy luncheon was still delightful, so I'll forgive him just this once.
I've had this photo in my photobucket account (minus the text) for over two years! One of my Canadian friends photoshopped it and sent it to me, but now I cannot remember the context of WHY she photoshopped me into a photo with a former PM. I do remember it being hilarious at the time. When I saw the photo of Janet's hubby with him, I suddenly remembered I had this little gem tucked away. What better time for it than NaBloPoMo, the day after I go all nuclear about healthcare?
We were on our way out to lunch in this photo. He wanted to take me somewhere fancy, but I said, "No Jean! No need for all of that. The nearest candy store will be fine. I would like an appetizer of Coffee Crisp, an entree of KitKat Chunky, and a platter of Smarties for dessert." And he happily obliged. Such fond memories I have of that day. Sigh.
ETA: NEWS FLASH! Evidently it was Paul Martin and HE LIED TO ME. He totally said he was Jean. And I'm just a little ole American with candy colored stars in her eyes, how was I supposed to know it wasn't really Jean?! The candy luncheon was still delightful, so I'll forgive him just this once.
I've had this photo in my photobucket account (minus the text) for over two years! One of my Canadian friends photoshopped it and sent it to me, but now I cannot remember the context of WHY she photoshopped me into a photo with a former PM. I do remember it being hilarious at the time. When I saw the photo of Janet's hubby with him, I suddenly remembered I had this little gem tucked away. What better time for it than NaBloPoMo, the day after I go all nuclear about healthcare?
Thursday, November 15, 2007
Healthcare is a Bitch
I went to doctor on Tuesday. No, not the gynecologist. I know, I know. Must do that. But those oh-so-joyous plans were preempted by a more pressing need. At the start of my last cycle, I took some Advil for my always-wicked cramps. I found that it gave me a pretty painful stomachache, even if I took half the adult dosing, so I stopped taking them and the pain receded. This month, at the start of my cycle, I took one solitary Excedrin before bed. Just one. And I woke up at 5am with a belly full of fire. I woke up and ate a muffin and it seemed to soothe it, but an hour later it was killing me again. I ate crackers. It soothed it. 20 minutes later it was killing me again. This went on for several days, although I had only taken one solitary Excedrin. It was clearly no longer an upset stomach irritated by a medication.
I had the suspicion that it might be the start of an ulcer, based on the type of pain, the frequency of it, and the location. It felt like strong hunger pangs, although I was not hungry, coupled with burning. So, I made an appointment. I do not have health insurance. In making this appointment, all sorts of things ran through my head. Diagnostic tests, lab fees, medication costs. It could be pricey. I went to google for information and found this.
Here is a sampling of the provided examples:
Sore throat, office visit:
Your throat hurts, you go to the doctor. Price includes visit with physician and Strep test. Test was negative. $109
Tubes in ears
Your child has had chronic ear infections. The decision is made to insert tubes his ears. Price includes office visit 30 days before procedure and 30 days after, day surgery charges, antibiotics, drops and decongestants. $2,719
Chest X-ray
You go to the clinic with a bad cough. Your physician thinks it may be pneumonia and orders a set of X-rays to help make the diagnosis. Price includes clinic visit, X-ray and reading of the results. $183
GI Endoscopy
Conducted by a specialist. Scope exam of the gastro-intestinal track on an outpatient basis. Includes conducting the test and reading the results. $1,398
Broken arm
Your child jumped off the swing set. Price includes ER visit, X-ray, simple cast. $2,523
KayTar has insurance, BubTar and the rest of us do not. Do I understand the risks? Yes, I believe I do. Do I like having to take those risks? No, I do not. You see, the insurance Josh's employer provides is extremely expensive. We pay between $800-$1000 per month for his company provided insurance, plus the co-pays are ridiculously high, therefore not helpful for everyday needs. We do not have that sort of money available to pay out monthly. No matter how tightly we adjusted our budget, which is very tight to begin with, we could not squeeze that much money out on a monthly basis. And so, when we found out what was happening with KayTar, we squeezed out that extra money to get her on an excellent plan. It is expensive for an individual plan, but the benefits are amazing. Her plan ends in February. They said that the co-pays were too high and they haven't seen enough interest in their plan, which basically means they are canceling it because they are not getting THEIR money's worth out of the "product".
Now we are faced with multiple issues. KayTar's perfect insurance is ended, so we must find her a workable plan. This in itself is no easy task. Every plan I have checked into does not cover her therapy needs, at all. There is no coverage for developmental-based therapy after the age of three, unless you qualify for something called "High Risk Pool" insurance. I'll come back to this later.
Her insurance started in August 2006 and will end in February 2008. HIPAA's protection of pre-existing conditions is effective only if you have been insured for 18 months prior to your current enrollment. February will put us right at 18 months, but I do not know if her enrollment DATES matter in this case. I am not sure that it will truly be a full 18 months, based on start and end dates and that makes me very nervous. If her pre-existing conditions are not covered, that means anything related to hearing loss, gastrointestinal problems, neurological problems, genetic problems, feeding issues...basically anything we have fought through for the previous year WILL NOT BE COVERED. Tell me, if none of that is covered, WHY DO WE NEED INSURANCE? We will be paying them for absolutely no reason, because they will not be paying out in any of the areas she has need of. Does that make sense to you?
Part of the reason we've fought so hard for a diagnosis recently, is because we know this window is closing; we know that if her pre-existing conditions are excluded we are sunk; we know that "High Risk Pool" might be the only way we can go. Here is the kicker, "High Risk Pool" only covers certain diagnosis from what I understand. What about kids like KayTar, who are medically needed, who need good solid coverage, but they aren't one of the "lucky" kids who have a label to attach to their symptoms? If KayTar, had diagnoses seizures, then we would be in! But bizzare neurological episodes accompanied by EEG abnormalities, brain lesions, developmental delays, feeding issues, and hearing loss? Try again. And it is also astronomically expensive. Basically once they are in the high risk pool, normal insurance will never cover them again, even if they "outgrow" their issues. They are a health risk, and insurance companies can't really make money off of those kids.
Did you know that our state provides an SCHIP program through the very company that KayTar currently has insurance through? With identical benefits? Did you know that we are eligible for this program if you use our net income, but if you go by our gross income we are just over the line? Just over the line! We don't even receive any of that money! Do you know where it goes? Taxes. We are paying the government to provide services like this for people in need and the TINY bit of money that we give is what keeps us from not being eligible for the programs ourselves. How can that be right?
The bill President Bush recently vetoed would have provided insurance for my kids. Not some faceless huddled masses. These kids. MY kids.
He can ask for $200 million to go towards the war, but we cannot spare $35 million for our children's healthcare. How is that right?
We are responsible parents, trying to make the best decisions in a situation that is not ideal for a number of reasons. Would things be different if KayTar's level of need wasn't so high? Yes, it likely would. But that isn't OUR reality. A lot of things would be very different in an ideal world, but that isn't where we live. We live here, mired in these challenges and I can't understand how our government can continue to hemorrhage money into this war and refuse to put a fraction of it to help children in need. It isn't even about socialized medicine, which I suppose is the big Republican fear. It is about the very real problem created by a healthcare system that is more geared to making profit margins grow, rather than actually provide affordable, worthwhile care. People suffer in that sort of system. People who don't have enough money to be a worthwhile investment for these companies to cover. People who need the coverage too much are denied. "Sorry, you will use this insurance too often. We only provide for people who will pay us ridiculous sums of money to provide peace of mind. We really try not to pay out in the event of actual medical needs." It is not a good system. It is not a HEALTHY system. Sure, there are people who function within it just fine, people with enough money and low enough levels of needs...but what about the people who fall outside those parameters? What do they do? What do WE do?
I went to the doctor on Tuesday. My doctor knows I do not have insurance, so rather than send me for diagnostic tests and lab work to confirm the ulcer suspicion, he called it gastritis and gave me a months worth of medication to help an ulcer heal. He also told me to come back after the month if I am still experiencing pain and we will go ahead with testing. The visit cost me $40. The medications were free. There are good and helpful doctors out there. Doctors that will help as much as they can when they know you are in one of these situations, but the system shouldn't be so broken that they are necessary. If our kids were eligible for SCHIP, Josh and I could take the money we put towards KayTar's insurance and get ourselves on an individual plan. Everyone would be covered. We could afford it. We could live with it. But unfortunately that is not the case, and it might never be. So we have to find a solution right now, in this system, and I don't know that it will be possible.
I had the suspicion that it might be the start of an ulcer, based on the type of pain, the frequency of it, and the location. It felt like strong hunger pangs, although I was not hungry, coupled with burning. So, I made an appointment. I do not have health insurance. In making this appointment, all sorts of things ran through my head. Diagnostic tests, lab fees, medication costs. It could be pricey. I went to google for information and found this.
Here is a sampling of the provided examples:
Sore throat, office visit:
Your throat hurts, you go to the doctor. Price includes visit with physician and Strep test. Test was negative. $109
Tubes in ears
Your child has had chronic ear infections. The decision is made to insert tubes his ears. Price includes office visit 30 days before procedure and 30 days after, day surgery charges, antibiotics, drops and decongestants. $2,719
Chest X-ray
You go to the clinic with a bad cough. Your physician thinks it may be pneumonia and orders a set of X-rays to help make the diagnosis. Price includes clinic visit, X-ray and reading of the results. $183
GI Endoscopy
Conducted by a specialist. Scope exam of the gastro-intestinal track on an outpatient basis. Includes conducting the test and reading the results. $1,398
Broken arm
Your child jumped off the swing set. Price includes ER visit, X-ray, simple cast. $2,523
KayTar has insurance, BubTar and the rest of us do not. Do I understand the risks? Yes, I believe I do. Do I like having to take those risks? No, I do not. You see, the insurance Josh's employer provides is extremely expensive. We pay between $800-$1000 per month for his company provided insurance, plus the co-pays are ridiculously high, therefore not helpful for everyday needs. We do not have that sort of money available to pay out monthly. No matter how tightly we adjusted our budget, which is very tight to begin with, we could not squeeze that much money out on a monthly basis. And so, when we found out what was happening with KayTar, we squeezed out that extra money to get her on an excellent plan. It is expensive for an individual plan, but the benefits are amazing. Her plan ends in February. They said that the co-pays were too high and they haven't seen enough interest in their plan, which basically means they are canceling it because they are not getting THEIR money's worth out of the "product".
Now we are faced with multiple issues. KayTar's perfect insurance is ended, so we must find her a workable plan. This in itself is no easy task. Every plan I have checked into does not cover her therapy needs, at all. There is no coverage for developmental-based therapy after the age of three, unless you qualify for something called "High Risk Pool" insurance. I'll come back to this later.
Her insurance started in August 2006 and will end in February 2008. HIPAA's protection of pre-existing conditions is effective only if you have been insured for 18 months prior to your current enrollment. February will put us right at 18 months, but I do not know if her enrollment DATES matter in this case. I am not sure that it will truly be a full 18 months, based on start and end dates and that makes me very nervous. If her pre-existing conditions are not covered, that means anything related to hearing loss, gastrointestinal problems, neurological problems, genetic problems, feeding issues...basically anything we have fought through for the previous year WILL NOT BE COVERED. Tell me, if none of that is covered, WHY DO WE NEED INSURANCE? We will be paying them for absolutely no reason, because they will not be paying out in any of the areas she has need of. Does that make sense to you?
Part of the reason we've fought so hard for a diagnosis recently, is because we know this window is closing; we know that if her pre-existing conditions are excluded we are sunk; we know that "High Risk Pool" might be the only way we can go. Here is the kicker, "High Risk Pool" only covers certain diagnosis from what I understand. What about kids like KayTar, who are medically needed, who need good solid coverage, but they aren't one of the "lucky" kids who have a label to attach to their symptoms? If KayTar, had diagnoses seizures, then we would be in! But bizzare neurological episodes accompanied by EEG abnormalities, brain lesions, developmental delays, feeding issues, and hearing loss? Try again. And it is also astronomically expensive. Basically once they are in the high risk pool, normal insurance will never cover them again, even if they "outgrow" their issues. They are a health risk, and insurance companies can't really make money off of those kids.
Did you know that our state provides an SCHIP program through the very company that KayTar currently has insurance through? With identical benefits? Did you know that we are eligible for this program if you use our net income, but if you go by our gross income we are just over the line? Just over the line! We don't even receive any of that money! Do you know where it goes? Taxes. We are paying the government to provide services like this for people in need and the TINY bit of money that we give is what keeps us from not being eligible for the programs ourselves. How can that be right?
The bill President Bush recently vetoed would have provided insurance for my kids. Not some faceless huddled masses. These kids. MY kids.
He can ask for $200 million to go towards the war, but we cannot spare $35 million for our children's healthcare. How is that right?
We are responsible parents, trying to make the best decisions in a situation that is not ideal for a number of reasons. Would things be different if KayTar's level of need wasn't so high? Yes, it likely would. But that isn't OUR reality. A lot of things would be very different in an ideal world, but that isn't where we live. We live here, mired in these challenges and I can't understand how our government can continue to hemorrhage money into this war and refuse to put a fraction of it to help children in need. It isn't even about socialized medicine, which I suppose is the big Republican fear. It is about the very real problem created by a healthcare system that is more geared to making profit margins grow, rather than actually provide affordable, worthwhile care. People suffer in that sort of system. People who don't have enough money to be a worthwhile investment for these companies to cover. People who need the coverage too much are denied. "Sorry, you will use this insurance too often. We only provide for people who will pay us ridiculous sums of money to provide peace of mind. We really try not to pay out in the event of actual medical needs." It is not a good system. It is not a HEALTHY system. Sure, there are people who function within it just fine, people with enough money and low enough levels of needs...but what about the people who fall outside those parameters? What do they do? What do WE do?
I went to the doctor on Tuesday. My doctor knows I do not have insurance, so rather than send me for diagnostic tests and lab work to confirm the ulcer suspicion, he called it gastritis and gave me a months worth of medication to help an ulcer heal. He also told me to come back after the month if I am still experiencing pain and we will go ahead with testing. The visit cost me $40. The medications were free. There are good and helpful doctors out there. Doctors that will help as much as they can when they know you are in one of these situations, but the system shouldn't be so broken that they are necessary. If our kids were eligible for SCHIP, Josh and I could take the money we put towards KayTar's insurance and get ourselves on an individual plan. Everyone would be covered. We could afford it. We could live with it. But unfortunately that is not the case, and it might never be. So we have to find a solution right now, in this system, and I don't know that it will be possible.
Wednesday, November 14, 2007
Tuesday, November 13, 2007
A favor, please?
My friend Katie who suddenly lost her mother last week is heading to the hospital this morning with her son. Jake is 8 years old and he weighs roughly the same as KayTar. He gets his feedings through a j-tube, but it hasn't been working well. He has lost 6 pounds in the last month. He needs surgery on his j-tube site, but because he is now nutritionally compromised, they cannot operate. They will be putting in a PICC line today at 1pm, to attempt to get him nutritionally stable and build him back up enough for the surgery he is in need of. Yesterday, his nurses at the care facility had to start him on oxygen because the whites of his eyes were going gray and his oxygen levels were falling between 63-83. Katie was in the hospital with Jake at this time last year, too, and it was so very difficult for all of them. I can't imagine having just lost my mother and having to face what lies ahead of them now. They know for sure he will not be out before Thanksgiving, but they don't know exactly how long it will be. Jakie has 5 siblings who just lost their grandmother and now have their brother heading to the hospital for an extended stay, please keep them all in your thoughts and prayers.
Katie is strong, but no one should have to bear the weight of all of this. If you would, please, leave her a few kind words today. When we were in the hospital, and all of you stopped by from jen's it was such an incredible comfort. In that moment, I felt much less alone. I wish that I could be there with Katie today, but since I cannot, I'd love it if we could all stand beside her in spirit. And please, send all the spare thoughts and prayers you can gather in her direction. She needs to be lifted up today, because the weight she is under is truly too much to bear. No one should lose a parent and wake up the next day in mortal fear for her child. It is just too much.
Katie's blog
Jake's CaringBridge
Katie and Jakie on Mother's Day.
Katie is strong, but no one should have to bear the weight of all of this. If you would, please, leave her a few kind words today. When we were in the hospital, and all of you stopped by from jen's it was such an incredible comfort. In that moment, I felt much less alone. I wish that I could be there with Katie today, but since I cannot, I'd love it if we could all stand beside her in spirit. And please, send all the spare thoughts and prayers you can gather in her direction. She needs to be lifted up today, because the weight she is under is truly too much to bear. No one should lose a parent and wake up the next day in mortal fear for her child. It is just too much.
Katie's blog
Jake's CaringBridge
Monday, November 12, 2007
A pair of friends
Yesterday was Josh's birthday. I know, such a bad bloggy wife am I...no birthday post for him. :( He is a quarter century now and VERY excited that he no longer has to pay the underage tax on car rentals. Oooooh!
Saturday we went out to dinner with our best friends, who happen to be married. L and I have been friends since junior high, prior to meeting Josh actually. We were both in NJHS together and band, but she was a flute and I was trombone, so we didn't really hit it off until we were in PE together and mutually avoided the whole physical part of physical education. We mostly talked about my Internet boyfriend (now Internet husband), which is totally exciting for a couple of eighth graders, as you might imagine. Josh and J have been friends since our sophomore year. We fixed them up on accident really. L was spending the day with me, J was spending the day with him, and we wanted to see each other. I remember apologizing to L, because it wasn't a set up and I felt kind of bad about forcing her to spend the day with us on a pseudo-double date. I was CERTAIN they wouldn't hit it off, and we surely were not gunning for that. But we decided to see a movie, Vampires, I believe. When we got to the rather old theater, we chose a row and walked down it. Josh stopped and sat, I stopped and sat, L stopped and sat, and then there was a seat missing. J made a big deal and said, "Fine. Don't sit by me." And walk around to sit by Josh. He was half joking and half making a big deal, I think. Then we went out to grab some Taco Bell. Oh the culinary instincts of 15 year olds! At the restaurant, if you can call it that, I sat on one side of the table next to Josh, and L sat across from me. Then J said, "If you won't sit next to me in the movies, I'm not sitting next to you now." and pulled his chair to our side of the table. It was clear this was not meant to be. And then, he showed up at her house one night that week and asked her to ice cream...and so it began. Unlikely romance, though it was.
And so we have the perfect set of couple friends, because they were born out of already solid friendships. It is really the best kind of merger. Josh has friends that are just his, I have friends that are just mine...but J and L are special because they are ours really. We enjoy them together and separately and it is lovely to see them. We were in their wedding. We've "camped" together. We see each other fairly often. We have long lists of both individual and couple memories that we've shared with them. It is always a good time.
So Saturday was no exception, we had dinner, our crew plus the two of them, then came back to our house and left the boys to play video games and put the kids to bed while we scooted off for coffee. We talked about her job, and KayTar, and BubTar, and politics, and fertility, and the school system, and the gynecologist, and the decline of American youth, and our families...we talked about everything, really. And then came back home to the boys, who were still playing video games and shouting things to each other periodically. L looked at me and said, "Can you imagine having relationships that are this superficial? Think about everything we just discussed, and here they are still perfectly content shooting and shouting at each other. Boys." I said, "I know. Did you know that when we were in the hospital, I asked Josh 'Did you tell J?' And he said 'Why would I do that?' Like it was a foreign concept." L said, "I know, remember when J's dad had cancer and he didn't think to mention it?" And yet, it works for them.
As they were leaving, I said, "Let me know when you have an open Saturday and I'll leave the kids with Josh and we'll go out." She said, "That sounds great! I can even drop J off here for the day!" Like a daycare of sorts...and I thought, really, that concept is really quite fitting for these man-children of ours. I don't think they ever quite outgrow that need to play and compete. Some men do so with sports, some with video games, some in other ways, I'm sure...but I think they all hold on to the school yard spirit of childhood. Truth be told, I kind of love that about them.
On their wedding day/
Saturday we went out to dinner with our best friends, who happen to be married. L and I have been friends since junior high, prior to meeting Josh actually. We were both in NJHS together and band, but she was a flute and I was trombone, so we didn't really hit it off until we were in PE together and mutually avoided the whole physical part of physical education. We mostly talked about my Internet boyfriend (now Internet husband), which is totally exciting for a couple of eighth graders, as you might imagine. Josh and J have been friends since our sophomore year. We fixed them up on accident really. L was spending the day with me, J was spending the day with him, and we wanted to see each other. I remember apologizing to L, because it wasn't a set up and I felt kind of bad about forcing her to spend the day with us on a pseudo-double date. I was CERTAIN they wouldn't hit it off, and we surely were not gunning for that. But we decided to see a movie, Vampires, I believe. When we got to the rather old theater, we chose a row and walked down it. Josh stopped and sat, I stopped and sat, L stopped and sat, and then there was a seat missing. J made a big deal and said, "Fine. Don't sit by me." And walk around to sit by Josh. He was half joking and half making a big deal, I think. Then we went out to grab some Taco Bell. Oh the culinary instincts of 15 year olds! At the restaurant, if you can call it that, I sat on one side of the table next to Josh, and L sat across from me. Then J said, "If you won't sit next to me in the movies, I'm not sitting next to you now." and pulled his chair to our side of the table. It was clear this was not meant to be. And then, he showed up at her house one night that week and asked her to ice cream...and so it began. Unlikely romance, though it was.
And so we have the perfect set of couple friends, because they were born out of already solid friendships. It is really the best kind of merger. Josh has friends that are just his, I have friends that are just mine...but J and L are special because they are ours really. We enjoy them together and separately and it is lovely to see them. We were in their wedding. We've "camped" together. We see each other fairly often. We have long lists of both individual and couple memories that we've shared with them. It is always a good time.
So Saturday was no exception, we had dinner, our crew plus the two of them, then came back to our house and left the boys to play video games and put the kids to bed while we scooted off for coffee. We talked about her job, and KayTar, and BubTar, and politics, and fertility, and the school system, and the gynecologist, and the decline of American youth, and our families...we talked about everything, really. And then came back home to the boys, who were still playing video games and shouting things to each other periodically. L looked at me and said, "Can you imagine having relationships that are this superficial? Think about everything we just discussed, and here they are still perfectly content shooting and shouting at each other. Boys." I said, "I know. Did you know that when we were in the hospital, I asked Josh 'Did you tell J?' And he said 'Why would I do that?' Like it was a foreign concept." L said, "I know, remember when J's dad had cancer and he didn't think to mention it?" And yet, it works for them.
As they were leaving, I said, "Let me know when you have an open Saturday and I'll leave the kids with Josh and we'll go out." She said, "That sounds great! I can even drop J off here for the day!" Like a daycare of sorts...and I thought, really, that concept is really quite fitting for these man-children of ours. I don't think they ever quite outgrow that need to play and compete. Some men do so with sports, some with video games, some in other ways, I'm sure...but I think they all hold on to the school yard spirit of childhood. Truth be told, I kind of love that about them.
Sunday, November 11, 2007
A Second Song for Sunday
And for KayTar.
Our song, for no other reason than she loves for me to sing it to her and with her. I have at least a hundred memories of her, content in my arms with this as the soundtrack. Healthy memories, ill memories, daytime memories, nighttime memories, home memories, hospital memories...a rainbow of memories with her, me, and our song playing in the background.
Hey there Delilah
What's it like in New York City?
I'm a thousand miles away
But girl tonight you look so pretty
Yes you do
Times Square can't shine as bright as you
I swear it's true
Hey there Delilah
Don't you worry about the distance
I'm right there if you get lonely
Give this song another listen
Close your eyes
Listen to my voice it's my disguise
I'm by your side
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
What you do to me
Hey there Delilah
I know times are getting hard
But just believe me girl
Someday I'll pay the bills with this guitar
We'll have it good
We'll have the life we knew we would
My word is good
Hey there Delilah
I've got so much left to say
If every simple song I wrote to you
Would take your breath away
I'd write it all
Even more in love with me you'd fall
We'd have it all
Oh it's what you do to me
[Hey There Delilah lyrics on http://www.metrolyrics.com]
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
A thousand miles seems pretty far
But they've got planes and trains and cars
I'd walk to you if I had no other way
Our friends would all make fun of us
and we'll just laugh along because we know
That none of them have felt this way
Delilah I can promise you
That by the time we get through
The world will never ever be the same
And you're to blame
Hey there Delilah
You be good and don't you miss me
Two more years and you'll be done with school
And I'll be making history like I do
You know it's all because of you
We can do whatever we want to
Hey there Delilah here's to you
This ones for you
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
What you do to me.
Our song, for no other reason than she loves for me to sing it to her and with her. I have at least a hundred memories of her, content in my arms with this as the soundtrack. Healthy memories, ill memories, daytime memories, nighttime memories, home memories, hospital memories...a rainbow of memories with her, me, and our song playing in the background.
Hey there Delilah
What's it like in New York City?
I'm a thousand miles away
But girl tonight you look so pretty
Yes you do
Times Square can't shine as bright as you
I swear it's true
Hey there Delilah
Don't you worry about the distance
I'm right there if you get lonely
Give this song another listen
Close your eyes
Listen to my voice it's my disguise
I'm by your side
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
What you do to me
Hey there Delilah
I know times are getting hard
But just believe me girl
Someday I'll pay the bills with this guitar
We'll have it good
We'll have the life we knew we would
My word is good
Hey there Delilah
I've got so much left to say
If every simple song I wrote to you
Would take your breath away
I'd write it all
Even more in love with me you'd fall
We'd have it all
Oh it's what you do to me
[Hey There Delilah lyrics on http://www.metrolyrics.com]
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
A thousand miles seems pretty far
But they've got planes and trains and cars
I'd walk to you if I had no other way
Our friends would all make fun of us
and we'll just laugh along because we know
That none of them have felt this way
Delilah I can promise you
That by the time we get through
The world will never ever be the same
And you're to blame
Hey there Delilah
You be good and don't you miss me
Two more years and you'll be done with school
And I'll be making history like I do
You know it's all because of you
We can do whatever we want to
Hey there Delilah here's to you
This ones for you
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
What you do to me.
Saturday, November 10, 2007
When Kyla gets sad...
She DOES things.
Busying things. Distracting things.
Things like cleaning KayTar's room, getting the pieces of KayTar's big bed out of the attic, cleaning them all, and then building her big girl bed, rearranging her room, and doing many loads of laundry.
Then Kyla feels very tired and has much less energy and focus for being sad.
I think it is call avoidance.
So that is what I did on Thursday. I know it seems counterintuitive to do the crib to bed switch when KayTar is so anxious, but that was actually our catalyst. We were all set to do it after Christmas, but she had physically NEEDED someone to drift to sleep every night this week and we reasoned that it only made sense to put her in a bed big enough for cuddles. And it has worked, MAN, has it ever worked.
The first night I laid with her from 9-10, Josh took 10-11, and I took the last shift of 11-11:20ish when she konked out. Yesterday, however, she went down for nap only getting out of bed three times. She didn't even need me to lay with her, she just went to sleep. She's been boycotting nap all week, so that was huge. Last night, she got out of bed only once before putting herself to sleep. She's slept through the night both nights as well.
Her bed was my bed as a kiddo, it is an antique.
Last night, she and I laid in her bed and read our own books for at least 45 minutes. She just laid next to me and read her book! She wasn't being goofy or trying to get my attention, we were just two people reading books together. In fact, if I would turn my head to look at her, she would nudge it back and say "Do reeenin! Books!" Of course, every couple minutes she would also say, "I wuuuv reeenin." or "I likes book!" But otherwise, it was all peace and quiet.
We're still not past all the doctoring anxiety, but I imagine that will take some time. Last night while reading, at one point, she scooted over against me and said, "Docdah. Go docdah. No waaaaaan to, MomMom." We have those moments every day, usually when we are getting in the car or getting ready for the day, but sometimes it comes quietly out of nowhere...the overflow of her fears tumbling out in to a hushed whisper. In those moments, I just hold her tight and wish all her fears away...and then life just goes on.
Busying things. Distracting things.
Things like cleaning KayTar's room, getting the pieces of KayTar's big bed out of the attic, cleaning them all, and then building her big girl bed, rearranging her room, and doing many loads of laundry.
Then Kyla feels very tired and has much less energy and focus for being sad.
I think it is call avoidance.
So that is what I did on Thursday. I know it seems counterintuitive to do the crib to bed switch when KayTar is so anxious, but that was actually our catalyst. We were all set to do it after Christmas, but she had physically NEEDED someone to drift to sleep every night this week and we reasoned that it only made sense to put her in a bed big enough for cuddles. And it has worked, MAN, has it ever worked.
The first night I laid with her from 9-10, Josh took 10-11, and I took the last shift of 11-11:20ish when she konked out. Yesterday, however, she went down for nap only getting out of bed three times. She didn't even need me to lay with her, she just went to sleep. She's been boycotting nap all week, so that was huge. Last night, she got out of bed only once before putting herself to sleep. She's slept through the night both nights as well.
Last night, she and I laid in her bed and read our own books for at least 45 minutes. She just laid next to me and read her book! She wasn't being goofy or trying to get my attention, we were just two people reading books together. In fact, if I would turn my head to look at her, she would nudge it back and say "Do reeenin! Books!" Of course, every couple minutes she would also say, "I wuuuv reeenin." or "I likes book!" But otherwise, it was all peace and quiet.
We're still not past all the doctoring anxiety, but I imagine that will take some time. Last night while reading, at one point, she scooted over against me and said, "Docdah. Go docdah. No waaaaaan to, MomMom." We have those moments every day, usually when we are getting in the car or getting ready for the day, but sometimes it comes quietly out of nowhere...the overflow of her fears tumbling out in to a hushed whisper. In those moments, I just hold her tight and wish all her fears away...and then life just goes on.
Thursday, November 08, 2007
Now with more angst!
We almost had it.
I knew she didn't fit the presentation. I knew it. But I let myself entertain the idea, a little too often, a little too long. But they said a pill could make her better. Just a pill. It is so simple, who can resist latching on to that kind of hope?
This post makes me feel sick. The joy and enthusiasm. The hope. I let it get away from me, this strict control I keep on those things. The reins just slipped away and I floated into the sky on a great big gust of hope. It is a long way to fall when you are so high up and you find that hope has disappeared.
Yesterday, I spent the day falling. I cried, a lot. I cried every time I thought about it. Or thought of having to tell someone. Or thought of thinking of it. Quietly, though. I hate tears. I hate people seeing my tears. I hate days where no matter what I do, they just keep spilling from my eyes. Yesterday was that kind of day for me.
It is ridiculous, though. I really didn't lose anything. I lost the idea of something. I lost the hope that there really might be an answer out there. And here I am, with an anxiety-ridden two year old who won't get dressed in the morning because of where she thinks we might be headed. We can't look anymore. We can't go traipsing through her body to attempt to find the hidden secrets, the keys to this mystery. She deserves a life outside of that. I never thought we would get to a point where we would be satisfied with a non-answer, because not knowing is so hard. You can't plan or expect or even be sure things are okay without an answer. But right now, in this moment, trying to get an answer feels worse than the alternative.
Our window has started to close. She is done and I won't force her past that. No appointments until January. Our insurance ends in February. I have no diagnosis to aid in making sure that she gets the type of coverage she needs. I was waiting to restart the search until after we had this answer. An answer could have provided aid. When we switch insurances, I don't know how much of her needs will be covered. I don't know what it will cost to see her specialists or have a lab run or have her hearing tested or see her therapists. I don't know what we will be able to afford for her in that way. I feel like everywhere I look, the world it covered in thick gray fog and it just KayTar and I huddled here in the tiniest of clearings. How do you choose a path in that sort of fog?
We canceled therapies this week, too. The decision was made for me, mostly. Our Tuesday therapist flaked on us, yesterday KayTar refused to put clothes on and I didn't feel it was worth the struggle, today I am canceling, tomorrow her therapist is out of town. Three week vacation, it is. It means I have three weeks before I have to tell her therapists we're back at square one. My tears will have dried by then, I think.
I knew she didn't fit the presentation. I knew it. But I let myself entertain the idea, a little too often, a little too long. But they said a pill could make her better. Just a pill. It is so simple, who can resist latching on to that kind of hope?
This post makes me feel sick. The joy and enthusiasm. The hope. I let it get away from me, this strict control I keep on those things. The reins just slipped away and I floated into the sky on a great big gust of hope. It is a long way to fall when you are so high up and you find that hope has disappeared.
Yesterday, I spent the day falling. I cried, a lot. I cried every time I thought about it. Or thought of having to tell someone. Or thought of thinking of it. Quietly, though. I hate tears. I hate people seeing my tears. I hate days where no matter what I do, they just keep spilling from my eyes. Yesterday was that kind of day for me.
It is ridiculous, though. I really didn't lose anything. I lost the idea of something. I lost the hope that there really might be an answer out there. And here I am, with an anxiety-ridden two year old who won't get dressed in the morning because of where she thinks we might be headed. We can't look anymore. We can't go traipsing through her body to attempt to find the hidden secrets, the keys to this mystery. She deserves a life outside of that. I never thought we would get to a point where we would be satisfied with a non-answer, because not knowing is so hard. You can't plan or expect or even be sure things are okay without an answer. But right now, in this moment, trying to get an answer feels worse than the alternative.
Our window has started to close. She is done and I won't force her past that. No appointments until January. Our insurance ends in February. I have no diagnosis to aid in making sure that she gets the type of coverage she needs. I was waiting to restart the search until after we had this answer. An answer could have provided aid. When we switch insurances, I don't know how much of her needs will be covered. I don't know what it will cost to see her specialists or have a lab run or have her hearing tested or see her therapists. I don't know what we will be able to afford for her in that way. I feel like everywhere I look, the world it covered in thick gray fog and it just KayTar and I huddled here in the tiniest of clearings. How do you choose a path in that sort of fog?
We canceled therapies this week, too. The decision was made for me, mostly. Our Tuesday therapist flaked on us, yesterday KayTar refused to put clothes on and I didn't feel it was worth the struggle, today I am canceling, tomorrow her therapist is out of town. Three week vacation, it is. It means I have three weeks before I have to tell her therapists we're back at square one. My tears will have dried by then, I think.
Wednesday, November 07, 2007
I got nothing.
Yeah. Nothing. Nada. Zip. Zilch.
40! DAYS!
It is actually quite nice except for the whole mind game portion.
I was kind of bluffing about the whole 40 day doctor thing, because "There's NO WAY I'll make it 40 days! I took pregnancy tests and posted them on the Internet! That is akin to the doing a ritualistic Period Dance." And yet. Hello, Day 40. Damn.
Josh has two theories.
1. His sleeping self and my sleeping self had unprotected sex, unbeknownst to our conscious selves. Doubtful. And kind of creepy, right? But it also sounds like a great way to multi-task.
2. I am currently on my period and "JUST DON'T KNOW IT, BECAUSE IT IS REALLY LIGHT."
I said, "Light like INVISIBLE?!" and he said, "Sure. Light like invisible." And I said, "Yeah, maybe I'm on my invisible period ALL THE TIME and I just don't know it!" And he said, "Don't ask me. It is YOUR invisible period. What do I know about it?"
Yeah, he's a funny guy.
****
Last night I rocked KayTar to sleep. I rocked my almost three year old to sleep. The last time I rocked her to sleep (when she wasn't being sedated for something) was when she was about this age:
About 6 months old
Just for comparison's sake, here is a repeat of yesterday's photo:
32 months old
That is to say, it has been quite a while. I've tried during various rough nights, but she always just wants to talk and play with me. Rocking does not settle her into sleep. She doesn't crave it.
Last night, we tucked her in, and this girl who puts herself to sleep nightly cried out. The same cry as last night. Josh went in and tried to Stern Daddy bit, it didn't fly. I went in, scooped her up, and sang a bit to her per her request. Then I went to set her back into the crib like last night and she panicked. I wasn't even out the door. I was still touching her, in fact, and she couldn't calm down. So I picked her up again and swayed around the room with her in my arms. She wrapped her arm so tightly round my neck that it was almost uncomfortable. When it would slip, she would wake, panicked, thinking I had gone. We did this until my arms felt like they would give out. We might have to keep a close eye on her weight, but a toddler is a toddler and they are a bit heavy. So I said, "Baby, can I take you to the rocking chair?" "A rock. A chair. Yes, MomMom." So I did.
She wrapped herself so tightly around me. She put her arms between my arms and my body. She slid her feet behind me in the chair. She nestled her head so it was pinned between my chin and chest. And she settled and slept. But every time her body relaxed, she would jerk awake and grab for part of me, my shirt, my nose, my hand. She had to have part of me in her hand, then she'd slip back to sleep. I rocked her for a while, waiting for it to stop, waiting for her to be in a deep sleep, but it never came. She started to feel cramped in that too small rocking chair and needed her own body space to sleep properly...but she didn't want to let me go. I kept rocking until it became clear she'd never get into a deep sleep without space to move and we went back to the crib. She freaked out and Josh was finally able to soothe her to sleep. Finally.
I got her test results this morning, while writing this actually. They came back normal. I don't know what it means. But we can't do this. They are going to want to do more tests and we just can't do that to her right now. She can't even sleep. The poor baby can't even fall asleep at night.
Last night when Josh and I fell into bed, he said, "Do you think we waited too long? Do you think it was too much and we should have put a stop to it sooner? Do you think it did damage?"
And I said, "I hope not, babe."
I really hope not.
40! DAYS!
It is actually quite nice except for the whole mind game portion.
I was kind of bluffing about the whole 40 day doctor thing, because "There's NO WAY I'll make it 40 days! I took pregnancy tests and posted them on the Internet! That is akin to the doing a ritualistic Period Dance." And yet. Hello, Day 40. Damn.
Josh has two theories.
1. His sleeping self and my sleeping self had unprotected sex, unbeknownst to our conscious selves. Doubtful. And kind of creepy, right? But it also sounds like a great way to multi-task.
2. I am currently on my period and "JUST DON'T KNOW IT, BECAUSE IT IS REALLY LIGHT."
I said, "Light like INVISIBLE?!" and he said, "Sure. Light like invisible." And I said, "Yeah, maybe I'm on my invisible period ALL THE TIME and I just don't know it!" And he said, "Don't ask me. It is YOUR invisible period. What do I know about it?"
Yeah, he's a funny guy.
****
Last night I rocked KayTar to sleep. I rocked my almost three year old to sleep. The last time I rocked her to sleep (when she wasn't being sedated for something) was when she was about this age:
Just for comparison's sake, here is a repeat of yesterday's photo:
That is to say, it has been quite a while. I've tried during various rough nights, but she always just wants to talk and play with me. Rocking does not settle her into sleep. She doesn't crave it.
Last night, we tucked her in, and this girl who puts herself to sleep nightly cried out. The same cry as last night. Josh went in and tried to Stern Daddy bit, it didn't fly. I went in, scooped her up, and sang a bit to her per her request. Then I went to set her back into the crib like last night and she panicked. I wasn't even out the door. I was still touching her, in fact, and she couldn't calm down. So I picked her up again and swayed around the room with her in my arms. She wrapped her arm so tightly round my neck that it was almost uncomfortable. When it would slip, she would wake, panicked, thinking I had gone. We did this until my arms felt like they would give out. We might have to keep a close eye on her weight, but a toddler is a toddler and they are a bit heavy. So I said, "Baby, can I take you to the rocking chair?" "A rock. A chair. Yes, MomMom." So I did.
She wrapped herself so tightly around me. She put her arms between my arms and my body. She slid her feet behind me in the chair. She nestled her head so it was pinned between my chin and chest. And she settled and slept. But every time her body relaxed, she would jerk awake and grab for part of me, my shirt, my nose, my hand. She had to have part of me in her hand, then she'd slip back to sleep. I rocked her for a while, waiting for it to stop, waiting for her to be in a deep sleep, but it never came. She started to feel cramped in that too small rocking chair and needed her own body space to sleep properly...but she didn't want to let me go. I kept rocking until it became clear she'd never get into a deep sleep without space to move and we went back to the crib. She freaked out and Josh was finally able to soothe her to sleep. Finally.
I got her test results this morning, while writing this actually. They came back normal. I don't know what it means. But we can't do this. They are going to want to do more tests and we just can't do that to her right now. She can't even sleep. The poor baby can't even fall asleep at night.
Last night when Josh and I fell into bed, he said, "Do you think we waited too long? Do you think it was too much and we should have put a stop to it sooner? Do you think it did damage?"
And I said, "I hope not, babe."
I really hope not.
Tuesday, November 06, 2007
I have a theory
After reading all of your lovely comments yesterday, I believe that the Lab is not only withholding KayTar's test results, but they might also have my dear Aunt Flo in lockdown. Hopefully, they will release them BOTH to my custody very, very soon. I should mention that never in my life has stressed affected my period. And I've been a fair bit more stressed than I am currently feeling, or at least more stressed than I am CONSCIOUSLY feeling. I suppose that subconsciously there could be more going on that I actually am privy to. If I get to day 40, that is TOMORROW, then I'll make an appointment. The first appointment I've had since birthing KayTar. I know, I know. Naughty, naughty Kyla...not having her regular, joy-filled, lady-time appointments. But I put off my appointment post-KayTar and by the time it was time for a yearly my life had exploded into all manner of OTHER appointments and the thought of making time for myself to have my feet up in stirrups became even more unappealing. I can think of a nice long list of places I'd rather be. That being said, if we get to tomorrow, I'll make my appointment like a good girl.
****
Yesterday was awful. KayTar knew where we were going from the moment she woke up. Mommy doesn't wake her unless we have Somewhere to Be. And sadly, the only place we have to be that early is the hospital. She was withdrawn all morning and once we got in the car and onto the freeway she started crying quietly and saying, "No docdahs. Don't want to MomMom. No docdahs." I told her we had to see the doctors today and that she would be okay. "You okay, KayTar. You okay." she repeated with tears in her throat. I almost flipped a u-turn on the freeway. It was just too sad. I let her pick some music (Maroon5 Wake Up Call, if you'd like to know what she's into these days) and tried to help her forget where we were going. It worked for a while. But one we exited the freeway she knew where we were and it started all over again. I felt every Mommy instinct in my body raise themselves in protection, but I had to keep driving. I made myself a promise, though, after yesterday, we are done for a while. No appointments. No doctors. No nurses. Unless someone gets sick, of course. She deserves a childhood that isn't so filled with poking and prodding. She deserves a vacation from it, if we can't quite manage a life that is free from it. I told myself that we would get it all done, and then be done. And so I kept driving.
The ABR went well actually. We had a different nurse, Martha, bless her soul. The first time KayTar wretched up the sedation meds, she said, "We have suppositories, do you think that would work?" "OH MY GOD YES! THAT IS THE ONLY WAY WE CAN GET MEDICINE INTO HER! WHY HAS NO ONE EVER TOLD ME ABOUT THESE BEFORE? I LOVE YOU MARTHA! MARRY ME! MARRY ME!!"
And so Martha got us three green sleep-inducing suppositories and they went right up the poop-chute while KayTar practiced counting them. She immediately curled up on my chest and was wholly content. It still took about an hour for her to fall into a deep enough sleep that I could lay her down, but it was a dream compared to the previous nightmares. Suppositories are my best friend! Martha is my hero! YAY FOR BOTTOM ROCKETS!
It went well. KayTar's left ear is largely unchanged, although she had a slight worsening in one of the frequencies and a slight improvement in the opposite frequency, neither is a large enough change to make a difference. They ran the test that helps predict if an ear is about to fail and her right ear still passed, so that is good. The audiologist said it is important to keep checking though, because there isn't a time limit on when it could fail. It was an interesting experience to watch them check her left ear. It practically flat lined. It made me sad to see that basically, that ear really has has flat-lined. I knew already, of course, but seeing it visually was a bit different. We left with an appointment to be seen in 6 months instead of 3. Thank God for little breaks.
Then we went to the 4th floor for her KUB. The receptionist printed our stickers and sent us to the 8th floor. We checked in on the 8th floor and the receptionist wanted to see our order from the doctor, which was still on the 4th floor. So after some floor jumping, we got it sorted out. Somewhere between floors, KayTar had diarrhea through her pants. I took her to the bathroom to discover I had already used her last diaper during the ABR. So I went back to the receptionist and asked if by chance they had any diapers handy. She said they would give me one in the x-ray lab. So we waited a minute or two and were called back. KayTar's tush was saved by the kind radiologists and their stockpile of Pampers. Because I had to answer the question, "Could you be pregnant?" honestly, I had to wait in the hall while they did her x-rays. I heard her ask for me twice, but the techs did SUCH a wonderful job with her. They had her count and say cheese and kept her mind off the noisy giant camera. She didn't even cry! Big girl.
After the KUB was done, we ran to the cafeteria to grab a quick lunch. KayTar has milk and Cheetos. I had a Chik-fil-a sandwich and a diet DP. After swallowing my food whole for the most part, I called the pediatrician's office to let them know we were headed in for her flu shot. I know everyone has an opinion about the flu shot, but with KayTar's propensity for getting really ill from minor things, we're not going to play roulette with this one. We got there, signed in, and waited maybe 5 minutes before being called back. We saw the doctor in the hallway and said hello. The nurse gave KayTar her shot and she didn't even get out a whole yelp before it was over. She got a shiny star bandage and we were on our way. The shot was actually the easiest part of our day.
We left the house at 6:45 and got home after 2pm. And we were oh-so-tired. Of course KayTar couldn't nap because she had been sedated all morning, but she petered out about 4:45 in her chair.
Josh (who I (perhaps unfairly) don't usually think of especially emotionally astute although he is incredibly caring) came in the door and said, "She needs a break. She can't keep going like this. She's going to hate the doctors again. Every time she goes she is being poked and prodded. We have to figure something out." and I said, "You know, that is exactly what I had decided on our way out this morning." So we talked about it and after this week, she is going to have a two week vacation from EVERYTHING. No therapy. No doctors (unless she is sick). No tests. Nothing. After the two weeks, we will reinstate therapy, because we can't let those go for too long, but we are still going to try not to have any doctor's appointments for at least a month, if we could make it to the new year without any, that would be a dream. She deserves a normal childhood, even if we can only manage it for two weeks every once in a while. That in itself makes me a little sad. I shouldn't have to block off time for her to be a child. She's been having episodes for over half her life. We've been in this diagnosing hamster wheel for over a year now and we just have to take a step back, even if two weeks is all we can manage. She's only two and a large percentage of her experiences and memories are caught up in doctors and nurses and tests and needles and trips to the hospital and IVs and electrodes and hospital bracelets. Sometimes it just doesn't seem all that fair for her. We can all tell it is weighing on her right now.
Last night at bedtime, she was crying in her crib. Not a "I don't want to go to sleep!" cry, but a sad cry. I went in to check on her and she said, "Carry you, MomMom?" and so I picked her up. She put her head on my shoulder and touched my mouth with her palm and said, "Singing, MomMom?" and I said, "What would you like me to sing, sweetie?" and she said "Whoooa, what you doooo meee.." and I said, "Okay, baby." and sang through Hey There Delilah for her. When I was done, she patted me and said sleepily, "Good singing, MomMom." and I said, "Sleep time now, sweetie. See you in the morning." and she rolled over and curled up in her Gee. As sweet as those moments are, when she's feeling emotionally secure, she doesn't ask for them. I know that when she needs those extra cuddles or a song in Mommy's arms at the end of the day, it means that it is all getting a little too scary and she needs me to chase it all away for her. And so I will.
Supergirl has limits, too.
***
ETA: My dear friend Katie lost her mother suddenly last night. Won't you please, please stop by and leave her some comforting words? I know nothing can heal her pain, but it is nice to know people are thinking of you when your heart hurts so very much.
****
Yesterday was awful. KayTar knew where we were going from the moment she woke up. Mommy doesn't wake her unless we have Somewhere to Be. And sadly, the only place we have to be that early is the hospital. She was withdrawn all morning and once we got in the car and onto the freeway she started crying quietly and saying, "No docdahs. Don't want to MomMom. No docdahs." I told her we had to see the doctors today and that she would be okay. "You okay, KayTar. You okay." she repeated with tears in her throat. I almost flipped a u-turn on the freeway. It was just too sad. I let her pick some music (Maroon5 Wake Up Call, if you'd like to know what she's into these days) and tried to help her forget where we were going. It worked for a while. But one we exited the freeway she knew where we were and it started all over again. I felt every Mommy instinct in my body raise themselves in protection, but I had to keep driving. I made myself a promise, though, after yesterday, we are done for a while. No appointments. No doctors. No nurses. Unless someone gets sick, of course. She deserves a childhood that isn't so filled with poking and prodding. She deserves a vacation from it, if we can't quite manage a life that is free from it. I told myself that we would get it all done, and then be done. And so I kept driving.
The ABR went well actually. We had a different nurse, Martha, bless her soul. The first time KayTar wretched up the sedation meds, she said, "We have suppositories, do you think that would work?" "OH MY GOD YES! THAT IS THE ONLY WAY WE CAN GET MEDICINE INTO HER! WHY HAS NO ONE EVER TOLD ME ABOUT THESE BEFORE? I LOVE YOU MARTHA! MARRY ME! MARRY ME!!"
And so Martha got us three green sleep-inducing suppositories and they went right up the poop-chute while KayTar practiced counting them. She immediately curled up on my chest and was wholly content. It still took about an hour for her to fall into a deep enough sleep that I could lay her down, but it was a dream compared to the previous nightmares. Suppositories are my best friend! Martha is my hero! YAY FOR BOTTOM ROCKETS!
It went well. KayTar's left ear is largely unchanged, although she had a slight worsening in one of the frequencies and a slight improvement in the opposite frequency, neither is a large enough change to make a difference. They ran the test that helps predict if an ear is about to fail and her right ear still passed, so that is good. The audiologist said it is important to keep checking though, because there isn't a time limit on when it could fail. It was an interesting experience to watch them check her left ear. It practically flat lined. It made me sad to see that basically, that ear really has has flat-lined. I knew already, of course, but seeing it visually was a bit different. We left with an appointment to be seen in 6 months instead of 3. Thank God for little breaks.
Then we went to the 4th floor for her KUB. The receptionist printed our stickers and sent us to the 8th floor. We checked in on the 8th floor and the receptionist wanted to see our order from the doctor, which was still on the 4th floor. So after some floor jumping, we got it sorted out. Somewhere between floors, KayTar had diarrhea through her pants. I took her to the bathroom to discover I had already used her last diaper during the ABR. So I went back to the receptionist and asked if by chance they had any diapers handy. She said they would give me one in the x-ray lab. So we waited a minute or two and were called back. KayTar's tush was saved by the kind radiologists and their stockpile of Pampers. Because I had to answer the question, "Could you be pregnant?" honestly, I had to wait in the hall while they did her x-rays. I heard her ask for me twice, but the techs did SUCH a wonderful job with her. They had her count and say cheese and kept her mind off the noisy giant camera. She didn't even cry! Big girl.
After the KUB was done, we ran to the cafeteria to grab a quick lunch. KayTar has milk and Cheetos. I had a Chik-fil-a sandwich and a diet DP. After swallowing my food whole for the most part, I called the pediatrician's office to let them know we were headed in for her flu shot. I know everyone has an opinion about the flu shot, but with KayTar's propensity for getting really ill from minor things, we're not going to play roulette with this one. We got there, signed in, and waited maybe 5 minutes before being called back. We saw the doctor in the hallway and said hello. The nurse gave KayTar her shot and she didn't even get out a whole yelp before it was over. She got a shiny star bandage and we were on our way. The shot was actually the easiest part of our day.
We left the house at 6:45 and got home after 2pm. And we were oh-so-tired. Of course KayTar couldn't nap because she had been sedated all morning, but she petered out about 4:45 in her chair.
Josh (who I (perhaps unfairly) don't usually think of especially emotionally astute although he is incredibly caring) came in the door and said, "She needs a break. She can't keep going like this. She's going to hate the doctors again. Every time she goes she is being poked and prodded. We have to figure something out." and I said, "You know, that is exactly what I had decided on our way out this morning." So we talked about it and after this week, she is going to have a two week vacation from EVERYTHING. No therapy. No doctors (unless she is sick). No tests. Nothing. After the two weeks, we will reinstate therapy, because we can't let those go for too long, but we are still going to try not to have any doctor's appointments for at least a month, if we could make it to the new year without any, that would be a dream. She deserves a normal childhood, even if we can only manage it for two weeks every once in a while. That in itself makes me a little sad. I shouldn't have to block off time for her to be a child. She's been having episodes for over half her life. We've been in this diagnosing hamster wheel for over a year now and we just have to take a step back, even if two weeks is all we can manage. She's only two and a large percentage of her experiences and memories are caught up in doctors and nurses and tests and needles and trips to the hospital and IVs and electrodes and hospital bracelets. Sometimes it just doesn't seem all that fair for her. We can all tell it is weighing on her right now.
Last night at bedtime, she was crying in her crib. Not a "I don't want to go to sleep!" cry, but a sad cry. I went in to check on her and she said, "Carry you, MomMom?" and so I picked her up. She put her head on my shoulder and touched my mouth with her palm and said, "Singing, MomMom?" and I said, "What would you like me to sing, sweetie?" and she said "Whoooa, what you doooo meee.." and I said, "Okay, baby." and sang through Hey There Delilah for her. When I was done, she patted me and said sleepily, "Good singing, MomMom." and I said, "Sleep time now, sweetie. See you in the morning." and she rolled over and curled up in her Gee. As sweet as those moments are, when she's feeling emotionally secure, she doesn't ask for them. I know that when she needs those extra cuddles or a song in Mommy's arms at the end of the day, it means that it is all getting a little too scary and she needs me to chase it all away for her. And so I will.
***
ETA: My dear friend Katie lost her mother suddenly last night. Won't you please, please stop by and leave her some comforting words? I know nothing can heal her pain, but it is nice to know people are thinking of you when your heart hurts so very much.
Monday, November 05, 2007
TMI for NaBloPoMo
This is what I did this morning.
And what I did on Friday.
No, we are not trying to get pregnant.
No, we did not have a breech of the front lines this month or anything of that sort.
I am just on DAY 38 of a roughly 28-30 day cycle. I am regular except for a handful of times in my entire life, even then it was only a day or two. The absolute latest I ever have been was 37 days and that was my second cycle after KayTar because my body was still, ahem, getting its groove back. I've never missed a period unless I was pregnant, and I've never been pregnant and unable to get a result from a home test. In fact, I wasn't even late yet with KayTar when I found out.
And so I come to you, wise Internets, to tell me where the hell my period went without notifying me first? Because, DUDE, it is tripping me OUT.
****
And keep sweet KayTar in your thoughts and prayers today. We have the dreaded ABR this morning and she is showing HIGH LEVELS of doctor-phobia. On Friday when the nutritionist came to weigh and measure here, she went batshit crazy when it was time to lay down. It took the nutritionist, Josh, and me to hold her down. She's never so much as whimpered during this before. I'm a bit nervous about how today will go for her when she is already agitated. She's supposed to have GI x-rays, but I might hold off because I don't want to leave her alone in there and I don't know what to say when the technician says "Could you be pregnant?" BIG FUN! Just think of the KayTar today if you get a spare second. I hate that she is feeling so fearful right now. I'm fighting the VERY STRONG URGE not to call and cancel, because I want nothing more than to give her a reprieve. However, unfortunately, anything later than today will put us past the deadline for the Great School District/Insurance Switch of 2008. So the Brain demands I keep the appointment, even though the Heart is throwing a bit of an internal tantrum about it all.
Because she's like a million times nicer to look at than a negative pee stick. ;)
And what I did on Friday.
No, we are not trying to get pregnant.
No, we did not have a breech of the front lines this month or anything of that sort.
I am just on DAY 38 of a roughly 28-30 day cycle. I am regular except for a handful of times in my entire life, even then it was only a day or two. The absolute latest I ever have been was 37 days and that was my second cycle after KayTar because my body was still, ahem, getting its groove back. I've never missed a period unless I was pregnant, and I've never been pregnant and unable to get a result from a home test. In fact, I wasn't even late yet with KayTar when I found out.
And so I come to you, wise Internets, to tell me where the hell my period went without notifying me first? Because, DUDE, it is tripping me OUT.
****
And keep sweet KayTar in your thoughts and prayers today. We have the dreaded ABR this morning and she is showing HIGH LEVELS of doctor-phobia. On Friday when the nutritionist came to weigh and measure here, she went batshit crazy when it was time to lay down. It took the nutritionist, Josh, and me to hold her down. She's never so much as whimpered during this before. I'm a bit nervous about how today will go for her when she is already agitated. She's supposed to have GI x-rays, but I might hold off because I don't want to leave her alone in there and I don't know what to say when the technician says "Could you be pregnant?" BIG FUN! Just think of the KayTar today if you get a spare second. I hate that she is feeling so fearful right now. I'm fighting the VERY STRONG URGE not to call and cancel, because I want nothing more than to give her a reprieve. However, unfortunately, anything later than today will put us past the deadline for the Great School District/Insurance Switch of 2008. So the Brain demands I keep the appointment, even though the Heart is throwing a bit of an internal tantrum about it all.
Sunday, November 04, 2007
A song for Sunday
Let it all out
get it all out
rip it out remove it
don't be alarmed
when the wound begins to bleed
cause we're so scared to find out
what this life's all about
so scared we're going to lose it
not knowing all along
that's exactly what we need
and today I will trust you with confidence
of a man who's never known defeat
but tomorrow, upon hearing what I did
I will stare at you in disbelief
oh, inconsistent me
crying out for consistency
and you said I know that this will hurt
but if I don't break your heart then things will just get worse
If the burden seems too much to bear
Remember
the end will justify the pain it took to get us there
and I'll let it be known
at times I have shown
signs of all my weakness
but somewhere in me
there is strength
and you promise me
that you believe
in time I will defeat this
cause somewhere in me
there is strength
and today I will trust you with the confidence
of a man who's never known defeat
and I'll try my best to just forget
that that man isn't me
reach out to me
make my heart brand new
every beat will be for you
for you
and I know you know
you touched my life
when you touched my heavy heart and made it light
-Relient K, "Let It All Out"
Yesterday I heard this song while driving and it made me think so clearly of a particular blog friend that I had to post it. It is a song by a Christian (crossover) band, but I think the sentiment is applicable to anyone experiencing the universal pain of healing. The courage and fear, the strength and weaknesses, the hope and suffering. I love that the subject of the song is such a difficult and dark process, while the melody is peace and beauty. We all need a little beautiful peace in our darkest moments.
get it all out
rip it out remove it
don't be alarmed
when the wound begins to bleed
cause we're so scared to find out
what this life's all about
so scared we're going to lose it
not knowing all along
that's exactly what we need
and today I will trust you with confidence
of a man who's never known defeat
but tomorrow, upon hearing what I did
I will stare at you in disbelief
oh, inconsistent me
crying out for consistency
and you said I know that this will hurt
but if I don't break your heart then things will just get worse
If the burden seems too much to bear
Remember
the end will justify the pain it took to get us there
and I'll let it be known
at times I have shown
signs of all my weakness
but somewhere in me
there is strength
and you promise me
that you believe
in time I will defeat this
cause somewhere in me
there is strength
and today I will trust you with the confidence
of a man who's never known defeat
and I'll try my best to just forget
that that man isn't me
reach out to me
make my heart brand new
every beat will be for you
for you
and I know you know
you touched my life
when you touched my heavy heart and made it light
-Relient K, "Let It All Out"
Yesterday I heard this song while driving and it made me think so clearly of a particular blog friend that I had to post it. It is a song by a Christian (crossover) band, but I think the sentiment is applicable to anyone experiencing the universal pain of healing. The courage and fear, the strength and weaknesses, the hope and suffering. I love that the subject of the song is such a difficult and dark process, while the melody is peace and beauty. We all need a little beautiful peace in our darkest moments.
Saturday, November 03, 2007
WARNING: BubTar bragging ahead!
BubTar has just been knocking my socks of recently and I about to burst if I don't do a bit of bragging.
He is in kinder this year, if we were in Canada it would be senior kindergarten, in case you all were wondering. He is a five year old, an April baby, so he is one of the younger kids in his class, although not the youngest.
At his school, they learn to write in cursive in Kinder. Well, he started it last year in PreK, but it was not for "mastery" only for exposure. In the last two weeks, the handwriting sheets he has brought home are just blowing me away!
He writes so neatly for being a kindergartener! Heck, he writes better than Josh does as an adult. ;) I'm just so impressed with the work he is bringing home. He recently had his first quarter tests, and he made 100's in every area, except for number writing, his 3 got away from him and he ended up with an 80 (only 5 numbers, so 20 points a piece, EEK!). Still completely impressive, though.
They have not yet started reading groups, that will begin later this month, but yesterday at the library, he selected the following books (because he likes camping and he likes books and bugs):
The first was chosen off the first grade Accelerated Reader shelves. It includes words like "specimen" and "science" and "studied", and he is reading it to me with very little assistance. I have to help him sound out a word per page, maybe. The second book is a touch easier and he takes it in the car to read, because he can do it without any help for the most part. If he does need help, he can just spell out a word for me so I can help him sound it out that way. They are both level two readers, for kids in 1st-3rd grades. He is in kinder! And they haven't started reading in class yet. He's really doing amazingly with it. The last book was his choice for a science-related book. He's been choosing a I Spy book each time we go to the library, but this time I suggested trying something new, like science? And he was excited and shocked. "They have SCIENCE BOOKS HERE?!" Science experiments are the highlight of his school week, so taking home a science book sounded like heaven. He didn't know how to choose. So I named a bunch of different science related subject areas and he chose insects. We pulled 4 or 5 books off the shelves for him to peruse and he finally decided on this one for a starter. Next trip, he's already got his eye on another. He was reading this one out loud to me on the way home from the library. His favorite new fact is that Moving Leaves sometimes take a bite out of each other because they look so much like real leaves!
Although he is all boy, in the way that he can be out of hand just like the rest of them, he is really doing so well in school. At our parent/teacher conference, his teacher said that his only difficulty in the classroom is staying on task or focusing properly. She said that although he struggles with this, it is not affecting his school work or his ability to retain the information that is given in class. I wonder if some of that is genetic. I cannot sit still during a lecture to save my life. My knees bounce, my hands fidget, I write song lyrics in my notebooks...but at the same time I am retaining every bit of what I'm hearing. If I were to force myself to sit still, I wouldn't hear a word of what was being covered because I would be too focused on making myself be still. Like Josh as a school ager he can be a bit of a troublemaker, but nothing serious most of the time. We are both so proud of the big kid he is becoming.
The scholar, in truest form.
He is in kinder this year, if we were in Canada it would be senior kindergarten, in case you all were wondering. He is a five year old, an April baby, so he is one of the younger kids in his class, although not the youngest.
At his school, they learn to write in cursive in Kinder. Well, he started it last year in PreK, but it was not for "mastery" only for exposure. In the last two weeks, the handwriting sheets he has brought home are just blowing me away!
They have not yet started reading groups, that will begin later this month, but yesterday at the library, he selected the following books (because he likes camping and he likes books and bugs):
The first was chosen off the first grade Accelerated Reader shelves. It includes words like "specimen" and "science" and "studied", and he is reading it to me with very little assistance. I have to help him sound out a word per page, maybe. The second book is a touch easier and he takes it in the car to read, because he can do it without any help for the most part. If he does need help, he can just spell out a word for me so I can help him sound it out that way. They are both level two readers, for kids in 1st-3rd grades. He is in kinder! And they haven't started reading in class yet. He's really doing amazingly with it. The last book was his choice for a science-related book. He's been choosing a I Spy book each time we go to the library, but this time I suggested trying something new, like science? And he was excited and shocked. "They have SCIENCE BOOKS HERE?!" Science experiments are the highlight of his school week, so taking home a science book sounded like heaven. He didn't know how to choose. So I named a bunch of different science related subject areas and he chose insects. We pulled 4 or 5 books off the shelves for him to peruse and he finally decided on this one for a starter. Next trip, he's already got his eye on another. He was reading this one out loud to me on the way home from the library. His favorite new fact is that Moving Leaves sometimes take a bite out of each other because they look so much like real leaves!
Although he is all boy, in the way that he can be out of hand just like the rest of them, he is really doing so well in school. At our parent/teacher conference, his teacher said that his only difficulty in the classroom is staying on task or focusing properly. She said that although he struggles with this, it is not affecting his school work or his ability to retain the information that is given in class. I wonder if some of that is genetic. I cannot sit still during a lecture to save my life. My knees bounce, my hands fidget, I write song lyrics in my notebooks...but at the same time I am retaining every bit of what I'm hearing. If I were to force myself to sit still, I wouldn't hear a word of what was being covered because I would be too focused on making myself be still. Like Josh as a school ager he can be a bit of a troublemaker, but nothing serious most of the time. We are both so proud of the big kid he is becoming.
Friday, November 02, 2007
Getting there
Since Josh is on vacation this week, I took the opportunity to run the remainder of KayTar's district paperwork to the intake school yesterday. I love public school offices, the scent, the sounds, the paintings and inspirational posters on the walls. I attended school in this district from kindergarten through eighth grade, but this is my first experience as a parent. BubTar is in private school, a decision we made long before having children. I never thought we would be involved with the public school system. We like the smallness of his private school and the challenging nature of the academics, and we also like that it teaches Christian curriculum, because we are, in case you didn't know, Christians. But there I was yesterday, standing in my past and looking towards my future in that office.
I don't usually discuss my extended family on my blog, because they don't know about my blog and I feel it is a breech of their privacies to talk about them without their knowledge, but I am making one tiny exception. My mother is strongly opposed to our putting KayTar into the district for assistance. She believes KayTar doesn't need the help and will catch up on her own by Kindergarten. She feels that they will label her and no teacher will ever give her a chance to succeed on her own again. She will be dismissed as soon as the teachers see her file. That is really just scratching the surface of her feelings on the issue, but I won't go any deeper. I've tried explaining that not helping KayTar now, before she gets into school, is setting her up for future failures in the classroom. That if we don't help close her gaps now, she will be at a disadvantage when she starts Kindergarten. But she still disagrees, public school is the enemy. It is not to be trusted.
I've been very apprehensive about this entire process. I've heard from so many people that I have to be prepared to fight for services. That districts are stingy with services and it will be difficult to get KayTar the help she needs. That the district is the enemy until proven otherwise. And every experience I have had interacting with the district has been in opposition to these views. I'm not wholly letting my guard down, but each meeting had been reassuring and helpful. I don't feel like I am in a battle, I feel like I am part of a team. They have explained the process, taken time to listen to KayTar's developmental and medical needs, to ask questions, to show me around, to help me make sure my ducks are in a row. Everyone I have had the pleasure of meeting has been caring and warm, truly interested in KayTar and her needs.
Yesterday, the woman who was helping me with paperwork asked me to give her another quick review of KayTar. I got to the speech issues and said, "Since getting her hearing aid, her speech has really taken off. But a big portion of it is mimicry and repeating things she's heard before in such a way that---" And the woman interrupted me, "It makes it seem like she speaks normally and understands more than she really does?" It was such a pleasant surprise to have my sentence finished, I said, "Yes, that is it exactly." Later in our conversation she said, "I don't think I formally introduced myself. I am the speech language pathologist." And then it made sense. But I felt so good about the fact that this woman would be the one evaluating KayTar's speech, someone who understood the nuances of her backwards means of language development. Someone who won't be fooled by KayTar's fancy-pants mimicking.
I brought home a pretty hefty questionnaire yesterday and filled it out. KayTar looks really difficult on paper, you know.
Therapies:
Ocupational
Speech
Physical
Developmental
Delays:
Physical
Speech
Self-care
Feeding
Under medical care for:
Neurological episodes
Developmental delays
Unilateral hearing loss
Brain lesions
Eye deviations
Drop attacks
Feeding disorder
Light sensitivity
Chronic constipation
Main concerns:
Speech/Physical development
Medical Issues
Sensory/Feeding aversions
Goals:
To be conversational and have a good understanding of language
To be able to function in a classroom
To have appropriate peer interactions
And so on for 8 pages.
But in person, she isn't really that person. Well, she is, obviously, but what I mean is, so much of that just is not evident. The episodes still happen as they will, but on a normal day, there is not hint of them. Her delays are becoming less and less obvious, though still there. Her physical delays are probably most striking, because she can't run and jump and climb like other kids her age. She has trouble walking on grass (although she is beginning to do better!) and on inclines. She falls more than other kids, too. She wears a hearing aid. Her lesions are internal, of course. The eye deviations happen fairly often. It has been months since the drop attacks happened last. Her feeding issues are a non-issue unless we're sitting down to eat with someone. The light sensitivity can be very obvious when she's in the throes of it, but recently, we have had good days. The constipation is largely controlled with medication. Looking at her, you don't see the laundry list of issues, but they are there nonetheless. And filling out the paperwork is always a trip. I think she'll end up with a 5 day, self-contained classroom placement, just because of her propensity to have a medical need during school hours. I don't think they'll put her in the combination classroom because the ratio is higher and they are less prepared to deal with the situation if something does occur. We will see, though.
Yesterday I was able to see the testing classroom. It was delightful. The walls were covered in familiar characters and preschool-friendly decor. The centers were filled with toys that KayTar would go nuts for. I saw many, many familiar toys from both our home and the therapy center. It looked perfect, like KayTar would be excited to come play and do well in the "testing" atmosphere. All in all, I left feeling even better than I previously had. Each encounter just assuages my fears just a bit more. I know that there is still a possibility I will need to put up a fight to get her services, but more and more, I feel like we are just joining a new team that will be just as beneficial as our ECI therapy team has been. I'm excited to see what a classroom experience will do for her. I'm starting to believe that this could be a very, very good thing for our little KayTar.
KayTar contemplates donut.
I don't usually discuss my extended family on my blog, because they don't know about my blog and I feel it is a breech of their privacies to talk about them without their knowledge, but I am making one tiny exception. My mother is strongly opposed to our putting KayTar into the district for assistance. She believes KayTar doesn't need the help and will catch up on her own by Kindergarten. She feels that they will label her and no teacher will ever give her a chance to succeed on her own again. She will be dismissed as soon as the teachers see her file. That is really just scratching the surface of her feelings on the issue, but I won't go any deeper. I've tried explaining that not helping KayTar now, before she gets into school, is setting her up for future failures in the classroom. That if we don't help close her gaps now, she will be at a disadvantage when she starts Kindergarten. But she still disagrees, public school is the enemy. It is not to be trusted.
I've been very apprehensive about this entire process. I've heard from so many people that I have to be prepared to fight for services. That districts are stingy with services and it will be difficult to get KayTar the help she needs. That the district is the enemy until proven otherwise. And every experience I have had interacting with the district has been in opposition to these views. I'm not wholly letting my guard down, but each meeting had been reassuring and helpful. I don't feel like I am in a battle, I feel like I am part of a team. They have explained the process, taken time to listen to KayTar's developmental and medical needs, to ask questions, to show me around, to help me make sure my ducks are in a row. Everyone I have had the pleasure of meeting has been caring and warm, truly interested in KayTar and her needs.
Yesterday, the woman who was helping me with paperwork asked me to give her another quick review of KayTar. I got to the speech issues and said, "Since getting her hearing aid, her speech has really taken off. But a big portion of it is mimicry and repeating things she's heard before in such a way that---" And the woman interrupted me, "It makes it seem like she speaks normally and understands more than she really does?" It was such a pleasant surprise to have my sentence finished, I said, "Yes, that is it exactly." Later in our conversation she said, "I don't think I formally introduced myself. I am the speech language pathologist." And then it made sense. But I felt so good about the fact that this woman would be the one evaluating KayTar's speech, someone who understood the nuances of her backwards means of language development. Someone who won't be fooled by KayTar's fancy-pants mimicking.
I brought home a pretty hefty questionnaire yesterday and filled it out. KayTar looks really difficult on paper, you know.
Therapies:
Ocupational
Speech
Physical
Developmental
Delays:
Physical
Speech
Self-care
Feeding
Under medical care for:
Neurological episodes
Developmental delays
Unilateral hearing loss
Brain lesions
Eye deviations
Drop attacks
Feeding disorder
Light sensitivity
Chronic constipation
Main concerns:
Speech/Physical development
Medical Issues
Sensory/Feeding aversions
Goals:
To be conversational and have a good understanding of language
To be able to function in a classroom
To have appropriate peer interactions
And so on for 8 pages.
But in person, she isn't really that person. Well, she is, obviously, but what I mean is, so much of that just is not evident. The episodes still happen as they will, but on a normal day, there is not hint of them. Her delays are becoming less and less obvious, though still there. Her physical delays are probably most striking, because she can't run and jump and climb like other kids her age. She has trouble walking on grass (although she is beginning to do better!) and on inclines. She falls more than other kids, too. She wears a hearing aid. Her lesions are internal, of course. The eye deviations happen fairly often. It has been months since the drop attacks happened last. Her feeding issues are a non-issue unless we're sitting down to eat with someone. The light sensitivity can be very obvious when she's in the throes of it, but recently, we have had good days. The constipation is largely controlled with medication. Looking at her, you don't see the laundry list of issues, but they are there nonetheless. And filling out the paperwork is always a trip. I think she'll end up with a 5 day, self-contained classroom placement, just because of her propensity to have a medical need during school hours. I don't think they'll put her in the combination classroom because the ratio is higher and they are less prepared to deal with the situation if something does occur. We will see, though.
Yesterday I was able to see the testing classroom. It was delightful. The walls were covered in familiar characters and preschool-friendly decor. The centers were filled with toys that KayTar would go nuts for. I saw many, many familiar toys from both our home and the therapy center. It looked perfect, like KayTar would be excited to come play and do well in the "testing" atmosphere. All in all, I left feeling even better than I previously had. Each encounter just assuages my fears just a bit more. I know that there is still a possibility I will need to put up a fight to get her services, but more and more, I feel like we are just joining a new team that will be just as beneficial as our ECI therapy team has been. I'm excited to see what a classroom experience will do for her. I'm starting to believe that this could be a very, very good thing for our little KayTar.
Thursday, November 01, 2007
If you don't... I'll lock you in Davy Jones' locker!
The power went to his head. All night we heard various refrains of "If you don't [insert action here] I'll lock you in Davy Jones' locker!"
For example:
If you don't stop at this stoplight, I'll lock you in Davy Jones' locker.
If you don't stop singing, I'll lock you in Davy Jones' locker.
If you kiss Mommy again, I'll lock you in Davy Jones' locker.
****
KayTar on the other hand, was fairly clueless about everything except her costume. She has found her True Love in the form of a pirate dress. She had a big day yesterday, with double doctor appointment and only caught a 30 minute nap on the way home from downtown. She zonked out in the car on the way home from the festival and she slept through me putting on her pajama bottoms, but as soon as I started taking off the dress, she startled awake. "Pirate dress up! Pirate dress up! No sweep clothes!" So we compromised on letting her cuddle the dress to sleep in her crib. This morning she woke in a panic because she couldn't find it. I have a feeling Pirate KayTar will be a frequent visitor at our home. But she's so cute, we'll let her stay as long as she likes.
Yeah, sometimes I do take advantage of the whole parroting thing. ;)
****
The appointments well. The doctor thing is starting to wear on her again, though. Monday we had an in town playdate and all the way down the main street, she kept saying "Bye doctors! Bye town! BYE! BYE!" I kept telling her we were just there for fun this time. When we got to the hospital yesterday, she started saying, "Don't want to." repeatedly in a tiny, sad voice. The ophtho said her eyeballs look fine, so she basically turfed us back to neuro. Always nice to have a wasted appointment. At the pediatrician's, we found that she's grown half a pound in two months, so we get to hold off on another appointment until she is three. Hooray! Our lovely pediatrician also let us hold off on a flu shot, because KayTar is starting to show doctor anxiety again. We thought a nice painless appointment was in order. Monday I have to go to town (as KayTar calls it) again for her ABR and GI x-rays, so we'll swing by the pediatrician's too for a quick flu shot. Monday will do nothing to help her anxiety levels. I think the ABR is probably the most stressful test for both of us. She just handles that form of sedation so poorly. But we'll try and make it as painless as possible for her.
****
KayTar scared Josh to death yesterday. He was in her room with her and she was crying. He called me with panic in his voice, so I went to see what was wrong. His thumb was wet.
J: Look at this! What color is it?
K: Yellow?
J: Yes. She just cried YELLOW TEARS! What the--
K: Hon, they put dye in her eyes today at her appointment, it is just leftover from that.
J: Oh my God. I thought "Good God, she's crying yellow tears. Another thing is wrong?! We're gonna have to go to the hospital..."
K: Yeah, it is just leftover dye. She's fine.
J: Wow.
K: She got you good. Happy Halloween.
****
If you missed the slideshow I posted last night, check it out. It's packed to the brim with cuteness.
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