The new belly.

She had her first feeds today, clear fluids only. The first one was fairly traumatic, the drainage tube had fused to her tummy and removing it was very unpleasant. Once that was over, hooking in the feeding tube was not as problem and she didn't mind the feeds at all. Though, she looks less than thrilled in the photo...



My parents came to visit, which mostly consisted of sitting and staring at her while she stared at her Tinkerbell movie. After that crazy exhaustion inducing exercise, she took a really long nap and when she woke up, she SAT UP! Then I asked if she wanted to stand, she did! Then I asked if she wanted to take a walk in the hall and SHE DID! We looped the floor twice before she crumpled back into her bed. She still hasn't moved much. That is hard work for a tired, pained little body. After crawling back in bed, she watched more Tinkerbell. Surprise.



After Tinkerbell time, Josh and BubTar came to visit. BubTar and I went to dinner together and Josh and KayTar bonded...by watching Tinkerbell. When we got back from dinner, the radio show people were there dropping of the goodies for the nightly craft contest, a blank watch and stickers. She decorated hers with stars and fish stickers, with a little help from her brother.



They also dropped off a letter from our friends, Kristin, Easton, and Dalton! I had her pose with it, but she couldn't quite smile...



The boys stayed long enough for me to shower (THANK GOD FOR SHOWERS) and then they went on their merry way. While I was in the shower, though, KayTar broke her Tinkerbell DVD. I fear for our survival without it. EEEK! My sister might have mercy on me and bring us a replacement tomorrow. I think "Watch Tinkerbell" is actually written her post-op orders...or at least it should be.

Later on, the radio people came back to award KayTar her prize for winning the craft contest, a Barbie. Her very first. She was thrilled and has been brushing its hair for about an hour now. Simple joys. Consequently, she won the art contest last year when she was here for her EEG, too. I wonder if they stack the odds for adorable little Tars.



Tomorrow, she'll start Pediasure feeds in her tube. She's only had three sips of fluid since 9:30pm on November 3rd and she still doesn't want anything to do with eating or drinking orally...and for the first time in her little life, I DON'T CARE! Honestly! She can be fully hydrated and nourished whether she feels up to drinking or not. A miracle in the form of a little plastic button. Amazing.

[Insert long, heartfelt sigh of relief]

She smiled.

This morning started infinitely better than yesterday. She's still far from herself, but I did get one tiny smile. She woke up at about 5am, while it was still dark out, and just fell asleep a few minutes ago (about 8:30am). She watched Tinkerbell and her pain seemed to be managed, though not absent.

Her doctors came by to visit, all at the same time strangely enough. The plan is to continue with IV morphine and start clear fluids today, start oral/g-button pain meds and solids/Pediasure tomorrow, and then go home if all goes to plan. It sounds lovely to me, as I slept for probably an hour and a half last night, between the darling baby (who is amazingly adorable and friendly) next door being awake and QUITE unhappy most of the night, and vitals checks, and KayTar's intermittent moaning. It won't be an easy recovery, even at home...but the promise of home in a couple days sounds great.

After waiting 7 hours for a room? We ended up with the penthouse suite. Check it out!







And, of course, the girl.



A couple of her owies. (I'll spare you the g-button, as it is still draining and not really ready for its close up. Also, if I had smell-o-vision, I'd share the DELIGHTFUL smell of post T&A breath...it is disgustingly impressive. Be thankful I have no smell-o-vision.)



Now, I'm optimistically going to attempt a nap. Fat chance as the ambulances are in full force and the darling baby next door seems to be agitated again, but a girl can (day)dream, can't she?

It was a BIG day.

She came through surgery wonderfully.

We spent 7 hours in recovery because they had no open rooms.

She is so very miserable and it is breaking my heart. They are giving her morphine, but when she wakes up she's in a lot of pain. The saddest part is that she can't even cry, because it hurts so much worse. She told me, "I'm broken." As is my heart, darling, as is my heart.

Here's to it being done. Hopefully tomorrow she'll start feeling better.

Thanks everyone. Thanks for carrying us through.

Super Tuesday

I'll update via Twitter when she is out of surgery and I'll try and post here as soon as I get a chance.

Preparations

A couple weeks ago, my friend Cori sent KayTar a little package for her upcoming hospital trip. In it, was a Groovy Girl with blond curly hair and a spare outfit (and surf board!). KayTar was thrilled with the doll, whom she promptly named "Luke", and agreed when I told her we couldn't open the spare clothes until we were at the hospital. This was how I told her "Surprise! You're going back to the hospital!" It turned out to be a good way to break the less than stellar news, because after school that day (and subsequent days) she would say, "Can we go to the hospital NOW?" I should be in PR, I think. If you can sell a hospital trip to a three year old, you can sell just about anything.

Here she is opening the gift and reading the accompanying letter (she has trouble following the lines sometimes, but did NOT want my finger pointing assistance):

Photo and video editing at www.OneTrueMedia.com

****

My mom has been making KayTar her own little stylish hospital gowns. We've picked up princess fabric and fairy fabric and all manner of fabrics that ooze the girliness my girl is so drawn to. She is quite thrilled with her new gowns and might be even more excited that they are called gowns, "Just like a princess!".



(just in case you ever need a tiny hospital gown pattern, there is a free one HERE. though, we discovered that the neck hole was a bit too big and needed adjusting and we opted to go with non-velcro sleeves.)

****

KayTar has informed me on multiple occasions that she is NOT going to the Girl Hospital, but rather the Boy Hospital. This is the sort of thing that happens at the Boy Hospital:



Yes, she would like to have her surgery at Sacred Heart.

****

Today I decided we might be overselling this whole hospital thing; new toys, new clothes, the cast of Scrubs...so this morning we sat down and talked about things a bit more.

We're going to the regular old hospital, with the boats out front and the stars in the elevator. She said, "Oh! I love that hospital! I love the boats and the stars, and every-fing."

She's going to get another Straw in her hand (IV). She looked a little less than thrilled, but she said, "Can the bandage be PINK? I wike pink."

The doctors are going to do something to her throat while she is sleeping to keep the frogs out, a frog trap if you will. It will make her throat hurt, but hopefully it will be the last sore throat for a long time. When she gets throat infections, she always says, "I have a frog in my throat." so that was the only way I could think to explain it to her in an understandable way. No, there are neither frogs nor traps involved, but if frogs are painful throat infections to her, then no more tonsils should be the equivalent of no more frogs.

I pulled up photos of g-buttons on the Internet, to show her what an extra belly button looks like and how it works, kind of like the Straw in her hand, but it puts the food right in her belly. She laughed and said, "Can I say, 'yum, yum, yum'?".

Then I told her she'd be getting stitches in her leg like her brother did this summer. She isn't too keen on this part, because she says stitches are "Too spidery." But I told her we can keep them covered up mostly.

****

Her surgery is a noon tomorrow. No Pediasure or food after midnight tonight, no clear fluids after 8:30 tomorrow morning. We have to be at the hospital at 10am.

Here we go!

Belly.

Ode to the Bottle

Tonight, I laid next to KayTar as she fell asleep, watching her every move, feeling my heart swell in my chest. She pulled her blankey to her face and settled in, drawing long, slow drinks from her beloved bottle of "chocolate milk" which is neither chocolate nor milk, but vanilla and Pediasure. Her eyes fluttered and she grew still, her breathing slowed and her drinks grew shorter, little grunting breaths interspersed in the sounds of suckling. Her hand started to slip as she grew sleepier, the bottle dipped and she drew in air. I fought the urge to reach over and right it again as I did in her infancy; she's a big girl now bottle or no. She lifted it higher for a few seconds and it dropped again, up and down it went until she grew too sleepy to bother. The nipple slipped from her mouth and she continued to nurse from the phantom bottle for a few more seconds before sighing and groping for my hand. She curled my index finger in to her little fist and released one last contented sigh.

KayTar and I did not have a successful nursing relationship. We tried, both of us, but it wasn't in the cards. I pumped for her for the first month, because she just could never seem to latch on. Now I know why, of course, low oral tone, but then I didn't have any idea. I offered periodically and one glorious day she finally latched on. I remember calling Josh immediately, pleased as punch. We could do this after all! Alas, although we won that battle, we ultimately lost the war. We had limited success with the latching, but every nursing session was an exercise in futility, she struggled and cried...nursing just was not as easy as drinking from a bottle and so about the time she was four months old, I let her wean herself as she had been desperately trying to do all along.

The bottle was no picnic either. BubTar was strictly an Avent infant, so before she was born, we stocked up, sterilized, we had it all. We had done the trial and error and we knew what worked. And then, we offered her one of our shiny new bottles and she couldn't drink from them. The nipple was too big or too firm or too something. She screamed and gave up. We used the ready made formula and nipples they gave us at the hospital, but even those gave her trouble. We bought pack after pack of bottles trying to find a solution. We tried different formulas. We tried it all. Feeding was a struggle from the day she was born. We thought the problem was gas or reflux or maybe an allergy, frankly, we had no idea. We just wanted to fix it. I don't know how or when we discovered it, all those months are such a painful, confusing blur for me, but after finding a few that were deemed only acceptable, we finally found a winner. The cheapest of the cheap, Parent's Choice bottle from Walmart, non-bumpy nipple, slow flow only, single-pinhole.

The bottle has been a sore spot for me at times. What kind of parent allows their three and a half year old to have a bedtime bottle? What kind of three and a half year old not only has a nightly bottle, but a thrice daily bottle? The kind who would waste away to nothing without it, that's what kind...but there are times that the logic isn't much of a consolation. I wrote this about a year and a half ago:

Today BubTar's school room mother asked how old KayTar was while helping BubTar from his booster seat.

She said, "Oooh, baby girl is getting big! How old is she now?"

"She is two." I replied, while smiling.

"It's time to get rid of that bottle, Mama." She stated, as she closed the car door.

And I pulled away from the curb feeling very much like I had been slapped across the face. Hot, wet tears poured down my cheeks and I didn't know why. I was angry and shaking, and the tears kept coming.

I was so wounded by her words, I sent her a letter in response. In it, I said this:

KayTar(...) has a feeding disorder, which prevents her from drinking from a cup or straw. She is still on purees, so most of her nutrition comes from her bottle. Without it she would have a feeding tube.

Here we are, THERE, the feeding tube right around the bend and all I feel for that bottle anymore is gratefulness. It nourished my child when my body could not. When her weight had fallen down, down, down the charts it held the Pediasure that allowed her to climb back up the charts. It provided her calories, enticed her with its comfort, ensuring at least one of her feeding experiences positive. It has soothed her through countless doctor's visits and tests. Dammit, the thing is practically a member of the family now. Next week, though, an era will end...the era in which bottles are necessary to life. Finally, after all of this time, we can wean her from the bottle without risking her nutritional stability. Although the transition won't be easy, I'm sure, it is now at least possible. Is it strange that it gives me little heart pangs? My sweet, sweet baby girl and her well loved bottle, going their separate ways. The final vestiges of babyhood finally falling away behind her.



Do you think it would be too much to have it bronzed?

NaBloPoMo?

Today is the first day of November, also known as National Blog Posting Month. Last year I played along and found it to be kind of freeing, I'm sure the quality of my writing took a bit of a dive, but forcing myself to sit and write on a daily basis about something, anything, without much thought to the actual content was challenging and refreshing. I had to write, so I wrote about things that might have normally slipped through the blogging cracks. Because I am psychotic, I think I'm going to give it another go this year. Yes, KayTar is having surgery next week. Yes, we'll be in the hospital. Yes, I'm in classes that are rather demanding of my time. Yes, I've been feeling a little tongue tied lately. But I'm going to give it a go.

KayTar has been home from school all week in an attempt to avoid germs that might make her miss her surgery next week. She didn't trick or treat last night or go to the festival, because all the candy in the world was not worth also bringing home the germs of a thousand snot-faced kids. She wore her costume all day and we rented a Dora movie and had a relaxing evening at home. The boys went and did the festival and trick or treating thing, stripping and scrubbing when they got back home, just like BubTar has done after school each day. Our house is such WILD AND CRAZY FUN!

In spite of all the germ precautions we've been employing, KayTar has been nursing a cough for a few days. It started as a little thing at Barely Noticeable Level, then it escalated to Need Her Inhaler Every 4 Hours Level, this morning it reached the bonus level, Woke Up To The Sound of Cough, Gag, Vomit Level. She doesn't seem to be sick, though. She isn't snotty or feverish, her energy level isn't down. Her airways are just irritated and overreactive, I suppose. I hope. The alternative is less than appealing. I'd rather not make peace with this surgery, make arrangements with my professors, make arrangements for BubTar, just to have it all canceled and replayed in a week or a month. The handy weather website tells me that the pollen levels are very high today and the air quality is marked as unhealthy for sensitive groups. So the party line remains, KayTar is not sick, just having a spot of trouble with her asthma this week...coupled with fervent knocking on wood. FERVENT. KNOCKING. Surgery is in three days. We can make it three more days. (knock, knock, knock)



In other words, welcome to NaBloPoMo, the Land of Kyla's Unbridled Neuroses.

Happy Halloween from the Tars!

Wordless Wednesday: Unblemished Belly

(1 of 2342874590348576 similar photos)

KayTar's Report Card

Tonight was my first parent teacher conference for KayTar and we reviewed the progress she has made with her IEP goals.

Goal: KayTar will master specific 25-36 month level gross motor skills addressing these identified educational needs: Ascend and Descend Four Steps

*Ascend four steps with help, alternating feet: Not Introduced

*Descend four steps, unassisted, two feet per step: Not Introduced

"Not Introduced" is a fancy way of saying "Oops! We haven't attempted this yet!"

Goal: KayTar will master specific 13-24 month level self care skills addressing these identified educational needs: Attempt to Put on Simple Garments (Pants), Remove Garments (Pants), Indicate Bathroom Needs

*Attempt to Put on Simple Garments (Pants): Limited Progress

*Remove Garments (Pants): Limited Progress

*Indicate Bathroom Needs: Limited Progress

"Limited Progress" is a fancy way of saying she needs lots of physical and verbal clues, as well as physical assistance to complete the task

Goal: KayTar will master specific 24-36 month level cognitive skills addressing these identified educational needs: Take/Bring Familiar Objects on Request, Match Textures by Touch, Sing Phrases of Songs

*Take/Bring Familiar Objects on Request: Satisfactory Progress

*Match Textures by Touch: Not Introduced

*Sing Phrases of Songs: Satisfactory Progress

Goal: KayTar will master specific 25-26 month level fine motor goals addressing these identified educational needs: Play with Playdoh, Shaving Creams, Pudding, and Other Textures

*Play with Playdoh, Shaving Creams, Pudding, and Other Textures: Limited Progress

Goal: KayTar will master specific 13-24 month level socialization skills addressing these identified educational needs: Greet Peers and Adults

*Greet Peers and Adults: Satisfactory Progress

Goal: KayTar will master specific 25-36 month level socialization skills addressing these identified educational needs: Share Materials, Wait Turn

*Share Materials: Satisfactory Progress

*Wait Turn: Satisfactory Progress

Goal: KayTar will employ developmentally appropriate oral grammar in the use of words, phrases and sentences. This will be evidenced by the mastery of:

*Define and Grammatically Use Pronouns (subjective, objective, possessive): Satisfactory Progress

*Respond to "Wh" Questions (who, what, which, where, when): Satisfactory Progress

*Use Simple Sentences with Correct Word Order: Satisfactory Progress

She has made satisfactory progress in 8 out of 12 attempted goals! We are quite pleased with that ratio, although I suspect that if the stairs and texture matching had been attempted, it might be a little closer to a 50/50 ratio.

The teacher's note said, "KayTar is a pleasure to have in my class. She is so eager to learn songs and answer all questions!" The teacher said she is quite the little character in class! She also said that EVERYONE looooves KayTar, even the kids from the general education class (where she has her inclusion time) are very fond of her and stop to say hello to her in the halls and cafeteria. All in all, it was a great meeting!

Almost posts.

KayTar's surgery.
We are a little over a week away from the Big Day (November 4th is both Election Day and Surgery Day, a doubly big day). She has made it through TWO FULL WEEKS of school and is drinking all of her Pediasure every day and it makes me wonder if we're doing the right thing. Of course we are. I can't make a major decision based only on this glorious moment in the sun, but parental guilt and torment know no reason. Letting someone cut into your child is definitely guilt and torment inducing. Isn't it fun to be me?!



School.
Guess what? It is time for exams. AGAIN. A&P II lecture exam on Tuesday, Microbiology Lab exam on Wednesday (written this time, not practical), and I'm also going to have to take Microbiology lecture EARLY, as in this week, because it will be given while I'm in the hospital with KayTar next week. As soon as I get back, it will be time to take an A&P II practical on all the veins, arteries, and internal organs. You're jealous, aren't you?



I'm going to be on the news and it is freaking me out!
Self-explanatory, really. I'm going to be on the local news and it is freaking me out! I thought the interview part was nerve wracking, but this is much worse. I'm becoming increasingly convinced that I must have said something stupid and it will be the ONLY part they play. I can't actually remember saying anything stupid, but it doesn't make me any less sure that I will look like an ass on television. Oh, the glamorous life.

Photo courtesy of KayTar.

Hindsight is 20/20.
Last night Josh and I watched an old video of the kids. The video started at the Christmas before KayTar was born (I was about seven months pregnant and BubTar was about six months shy of three years old) and ended when she was six or seven months old. We were shocked at how coordinated BubTar was, how he could run and jump and walk on GRASS! He didn't sit in a W! We were shocked that he was capable of having real conversations. We were shocked that he was just about outgrowing pajamas that KayTar is barely growing into. HE WAS A WHOLE YEAR YOUNGER! We were somewhat less surprised to see KayTar spontaneously gag, gag, gag, VOMIT as an newborn. We were also not surprised to see her stuck on her back at six months of age, not holding her head up, not doing much of anything, while her similarly aged cousin crawled and sat and rolled and made eye contact. At one point KayTar made a cooing noise and I said, "Did you hear that? She said, 'Start me in developmental therapies now, please!'" Ha. Hindsight is a HOOT!

My life is weird.

Yesterday there was a reporter and camera guy from one of our local news channels in my living room.

A REPORTER AND CAMERA GUY IN MY LIVING ROOM.

They interviewed ME (about children's healthcare, of course).

It still seems a little surreal to me.

I've spent the majority of my life being quite certain I would never be the sort of person that might have video cameras in her living room. I was also positive that I would never make a habit of giving speeches in front of legislators or members of the press. I was equally convinced that I'd never end up in statewide papers or be flown to New York for a photo shoot either. I was probably also pretty secure in the fact that my mailman would never stop me and say, "Hey! I read about you in the paper. You guys got a bum deal."

That is to say, sometimes I'm wrong.

I can now say I have now lived through my first television interview! They said I did really well, but I was too nervous to objectively judge it for myself. The reporter even said, "They are going to think I got an actress for this one." which was obviously him being WAY TOO KIND. I'm still very nervous about it all, you know, how it will be edited and spliced, whether I'm going to sound like an ass, that sort of thing. It won't air until next week and even then I think I might just be too nervous to watch it for myself!

[this is where the photo of the reporter and camera dude would be if I wasn't so panicked that I totally forgot to take a picture of them]

Let's just pretend it is (wordless) Wednesday.

KayTar and her cousin at the Pumpkin Party yesterday. Their expressions are priceless! (click to enlarge)

Lessons

Lately, BubTar has been keen on doing things for himself. We've been delighted to discover that six is quite a capable age, every time he tries something new we exclaim, "I guess six year old CAN [insert task here]!" He's quite proud of his list of new accomplishments.

Last night, after eating a piece of toast I made for him, he decided he wanted another, but this time he wanted to do it himself.

He said, "Mom, I want to make my own toast. Can you give me lessons?"

Then he walked to the microwave, opened it, put his slice of bread in and looked at me expectantly.

I said, "Lesson one, you use the TOASTER for toast."

He looked at me sheepishly for a second, grabbed his bread, and said, "I KNEW THAT!"

Sure you did, buddy. Sure you did.

Wordless Wednesday: Chatterbox

Make video montages at www.OneTrueMedia.com

(If you're short on time, the highlight (at least, for me) is when she has the sidebar about whether I like clams or not near the beginning (when you're working on a story, you've just GOT to do your fact checking, you know), after that it kind of devolves into a monologue of three year old ramblings and motivational speak, which can be entertaining in their own way. And yes, she is singing Pat BenaTar when the video starts. )

Score 1 for the Internets

From time to time, I get a random email or comment with a link or a condition name for me to check out in regards to the KayTar. I always appreciate people taking the time to think of our little mystery and pass along information they feel might be pertinent, even though we've (mostly) gotten to the point we've (mostly) accepted the questions we live with and (mostly) stopped pining away for that elusive answer. A couple of weeks ago, however, I had quite the influx of emails/comments all suggesting a single condition, mitochondrial disease. Weird, right? In fact, just as I was telling Josh about the weird Twilight Zone-ness of it all, I sat down to check my email and BAM! there was another one. So I did what any overly superstitious blogger mature, responsible parent would do, I emailed the pediatrician about it.

She knows about the blog, so I basically said, "Hey, the Internets told me to ask about this!" only with a bit more verbal camouflage than that, and she was kind enough to not even point out I was taking medical advice from people who I fondly know only as "anonymous". She even went so far as to hop into her forklift and haul the behemoth also known as KayTar's medical file to her desk for review. She's good to us like that. She said that KayTar fits some of the symptoms of some of the mitochondrial disorders, but not ALL of the symptoms of any. Still, she feels like looking into it might be helpful, so we will. Her neurologist (who we saw yesterday) said that we've tested her peripherally for mitochondrial disorders, through labs and such, but since she is headed to the OR (on November 4th, in case you missed the rescheduling update), he's going to order a muscle biopsy to get some more conclusive results (though they'll be look at things other than mitochondrial disorders, too). Now the OR to do list look like this:

Tonsil/adenoid-ectomies
G-button installation
ABR
Muscle biopsy

We like to multitask, what can I say?

The neurologist said it will take about two months to get the results back and even then we might not learn anything new, but he said there isn't a downside to having it done since she'll be having surgery either way. Two months, meh, big deal. We've been waiting years for a diagnosis, so what's two months? Just a blink, really. I almost didn't write about this at all. After last year's hope dashing debacle I'm reluctant to approach anything even mildly resembling hope, but I don't really feel hopeful about this, just curious. How bizarre would it be if my friendly little lurkers were the reason we happened upon her diagnosis? That would definitely be a story for Mystery Diagnosis. Heh.

So to YOU, my dearest lurkers, (yes, I can see you back there in your trench coats and dark glasses) thanks for the suggestion!

PS: While I'm tapping into the collective knowledge of the Internets, does anyone have any personal or peripheral experience with the BAHA (bone anchored hearing aid)? We're researching options for KayTar's increased hearing loss.

This says it all, really.

Exams over. Collapsing into an exhausted heap in 3, 2, 1.....

Wordless Wednesday: Exam Week

Whatever.

KayTar and I argue a lot--maybe argue is the wrong word, she has an opinion and I have a different one, and we voice them repeatedly--nope, I guess argue IS the right word. I play along dispassionately, mostly to appease her, but she really enjoys herself.

For instance, the other day I picked up lunch for myself on the way to get BubTar from school because groceries at home were severely in need of restocking. Lest you think I am a horrible mother, I offered KayTar food as well, but she passed on it. SHOCKER! Well, we get through the drive through and she says, "Where is MY soda?" No food(!!!) does not mean no drink, evidently. The conversation went like this,

K: Give me my soda.

M: I didn't get you a soda. I have a soda. Want a sip?

K: Okay. It is MY soda.

M: No, it is MY soda, but you can have some.

K: It is MY soda.

Me: (silence)

K: But it is MY soda, Mom!

Me: (silence)

K: (getting louder) BUT IT IS MY SODA, MOM! SAY IT TO ME!

Me: (silence)

K: (speaking in the ranges only dogs can hear) SAY IT TO ME!

Me: Actually, it is MY soda.

K: Well, actually is is MY soda.

Me: Mine.

K: Mine!

Me: Mine.

K: Whatever, it is MINE.

Hold up there tiny sister-friend, did you just say "Whatever!" to me?

And then it hit me, she sounded JUST.LIKE.ME.

You see, we have these little conversations about 100 times a day. Over everything. Maybe I say that I like a certain thing and KayTar assures me I DO NOT like that specific thing. Or maybe she wants to wear something that is in the dirty hamper. Or maybe she wants to watch something that isn't currently on TV and she assures me that, actually, it IS on TV! Or maybe she wants defend her stance on the idea of spontaneous generation. Whatever. We go round and round all day long because she loves the repetition and back and forth of it. We even argue when the answer is yes, as seen below:

K: Can I do coloring?

Me: Yes. Here are your crayons and pencils.

K: Ohhh! Can I do coloring?

Me: Yes.

K: But can I do coloring?

Me: Yes.

K: I'm going to do coloring. Can I do coloring?

Me: Yes, you can do coloring. (stepping away slowly)

K: MOMMY! Can I do coloring now?!

Me: Yes.

K: But CAN I do coloring?

Me: Hey K! Can you do coloring?

K: Yes, I can do coloring.

Me: (smugly thinking I've settled it)

K: But Mommy, can I do coloring?

Even when I go quiet (as seen above) she keeps poking until I've given her a satisfactory effort. Eventually, though, I tire of it (after we've discussed the exact same thing, oh, 750 times or so) and need a way to opt out. Well, as I realized in the car that day, my way to opt out has been saying, "Whatever." under my breath. Look at me, being a responsible parent! But usually, once we get to the Whatever Stage, she is able to let whatever the argument of the moment is and walk away happily. It works. Well, a couple days after the soda-whatever incident, I figured out WHY she walks away happily.

K: Can I wear my costume now?

Me: No, you have to wear your uniform today.

K: But can I wear my COSTUME now?

Me: No, you have to wear your uniform.

K: But ACTUALLY, I LOVE my COSTUME. CANIWEARITNOW?

Me: Actually, you are going to school and have to wear your uniform today.

K: But I can wear my costume.

Me: No, you have to wear your uniform.

K: But ACTUALLY, I CAN wear my costume.

Me: Nope. You have to wear your uniform.

K: BUT I WANT TO WEAR MY COSTUME (slipping into sing-song voice) and be a beeeeautiful mermaid.

Me: I know, but you have to wear your uniform.

K: But I have to be a MERMAID!

Me: Not right now. After school you can be a mermaid, now, you have to be in your uniform.

K: Mermaids don't HAVE uniforms! (slipping into sing-song voice) And I am a beeeeautiful mermaid.

Me: Sorry kiddo. No costume.

K: BUT MOM! JUST!SAY!WHATEVER!!

Me: (kind of taken aback) You want me to say whatever?

K: Yes. Say it!

Me: (curious) KayTar, who wins when I say "Whatever."?

K: I win, Mommy. I ALWAYS win.

Ain't that the truth, kiddo.

Here we go...

The surgery is scheduled for October 14th.

(I feel a wee bit dizzy.)

Yes, that is next week.

(when I told BubTar, he said, "So, I get a little bit of free time here without KayTar?!" Brotherly love, how it melts my heart! )

NEXT WEEK!

(why do I suddenly want to take millions of photos of her little unblemished belly?)

Goodbye, tonsils and adenoids. Hello, g-button.

(and also? EEEEEEEEEEEK!)

That is all.

(no really, that is all.)

Change of plan, surgery will actually be on November 4th.

Guess what?

Yesterday, I got an envelope in the mail from SCHIP. It was addressed to KayTar, but it didn't look like one of the many little FYI letters the insurer sends out (Be on the lookout for bee stings! Don't forget to have your child immunized!). I opened it and was surprised to find a new card for her. We already have her card and a back up, actually, so I was a little confused. I had panicked for a split second, worried that they had changed her PCP (our beloved pediatrician) and this was our notification, so I quickly scanned the card for changes. And I found this:

Copays:

OV (office visits): $0

ER: $0

InP (in-patient hospitalization): $0

RX (generic/brand): $0

In the 3 months she's had insurance, we've spent her out of pocket maximum. Now everything is free until next July. That includes pediatrician visits, specialist visits, tests, labs, ER visits, medications, Pediasure, hospitalizations, durable medical equipment, and SURGERY. Everything will cost us $0. What timing! As my wise friend Katie pointed out,"God said, 'DO THE SURGERY NOW KYLA.'"

Message received.

Information Processing

KayTar missed school on Wednesday (and Thursday and Friday), but I kept her ENT appointment because she wasn't feverish (yet). I had questions I hoped to get answers for and I didn't want to cancel unless I absolutely had to. Turns out, I actually got some answers. Imagine that! I'm going to break them into categories to make it more easily digestible. I've had two days and I'm still trying to swallow it all down.

1. Progressive hearing loss...

was confirmed. With her right ear masked (white noise fed into her functioning ear to block out sounds) her left ear tested completely in the profound range. There was a spike at the very end, but it wasn't high enough to get into the severe range. However, her bone conduction results looked much better than the regular test and the audiologist isn't sure of what that indicates. She said we definitely need an ABR to get more information. The ENT said this can be done during her surgeries, it will just add about an hour to her overall anesthesia time.

I asked him to give me the odds of it progressing to her right ear and he said there are none. However, he did say that if we were to get an MRI of the temporal bones and detect a soft tissue abnormality on the left that isn't present on the right, then that would be a good indicator that the right ear is safe, but no abnormality means no indicator. Her CT of her temporal bones was normal, but an MRI has more detail where soft tissue is concerned and an abnormality might be detected. Her brain CT was clear, but her brain MRI was not...that sort of deal. So if and when she has another brain MRI, we will add on a temporal bone MRI to reduce anesthesia for her. She sees her neurologist on the 13th, so I suppose we'll chat about it then.

He also said her hearing aid is probably not helping at all at this point.

2. Surgery

He thinks we should move the surgery up. In fact, when the nurse came in to schedule it she said, "How is October 14th for you?" And then my heart just fell right out my ass and landed on the exam room floor. Thwack! It was a little embarrassing, because then I had to scoop my heart back up and swallow it down again. Gulp. Her ENT feels that postponing the surgery until December will cause her to miss more school for infection than she would miss for surgical recovery time. I see his point, I've thought it myself to be honest, but...of course there is a but...I've been easing myself into this decision. See, I've made it, but I know I don't have to act on it for a few months which provides me with ample emotional digestion time. When he talked about moving it up, but insides were all "Whooooa! Let's throw on the breaks here, people! This is not what I signed up for!" My brain was all, "Oh, yes. I see your point. If that is what is best for KayTar, of course we'll do it." Then my insides were like, "But we have loads of agonizing What Ifs to go over before this happens! Emotional torture yet to be experienced!" and my head was like, "If you've decided it is the best thing for her, why wait?" I should sell tickets to these debates, I think.

Since I couldn't make a decision, I did the next best thing...I talked to our pediatrician. God love her, she told me that either decision would be fine. She sees the medical reasons to do it sooner and the momical (yeah, I made that word up just now) reasons I might want to wait. However, she did inadvertently lead me to an epiphany of my own by reminding me that the recovery will be no picnic for KayTar. If she wasn't getting a g-button at the same time, there would be no way we'd be able to do the tonsillectomy in the first place, really. Can you imagine KayTar wanting anything to eat or drink after throat surgery? HA! As it stands, she will be in the hospital for about a week and then she will be home and not feeling great for another week at least. If we do this during her Christmas break, it will ruin her holidays. I don't want her to have horrible holidays! There are other reasons, too, of course. Cold and flu season is descending upon us and being tonsil-free and in possession of a g-button will make it much easier on her. Sure, she'll miss 10 days or so for the surgery, but hopefully she will avoid at least that many absences by having the surgery. The only downside seems to be that I'll miss a week of my classes while I'm in the hospital with KayTar. If that is the only real problem I can come up with, I don't really see any reason to put it off. And just like that, I think I'm okay with it, and not just in the I'm-forcing-myself-to-be-okay-with-it-through-sheer-force-of-will kind of okay, the REAL kind of okay. I might even feel a tiny bit of peace about it all. Strange how that happens when you least expect it.

On Monday, I'll call the nurse and see if the 14th is still available for both the ENT and pediatric surgeon and then we'll go from there. The trickiest part of this is going to be keeping her healthy long enough to HAVE the surgery, I think!

Little baby seal

This morning, I was awakened by a distinctly familiar sound.

BARK! BARK!

The "little cough, probably caused by a tiny tickle in her throat" that Josh described to me when I got home from school last night had morphed, just like that, into the big bad bark.

BARK! BARK! BARK!

I sleepily nudge Josh and mumble, "Did you hear that? Here we go."

BARK!

"Mommy! I need my Qvar*! I need more Qv--BARK! BARK!--Qvar!"

Crying. Barking. Me, half-awake, stumbling to her bedroom.

BARK! BARK!

"I need my Qvar, Mommy! That hurts me." BARK! More crying.

She lays still in my lap, while I hold her spacer over her little mouth and nose. She breathes in the Albuterol slowly, as deeply as she can manage.

In between puffs, she says, "I feel sick."

I say, "I know baby, just breathe." and smooth her hair with my free hand. I shush her a little so she doesn't exacerbate it by talking.

"It's too bright in here. My eyes hurt. Make it darker."

"I can't, sweetie, there are no lights on. The sun is coming up outside. Put your blankey on your eyes until they feel better. Shhh."

I remember the date. October 1st. 30 days since the last episode, there's probably another lurking around the corner.

Her eyes begin to adjust, ever so slowly, and I feel a little rush of relief. The episode isn't here yet. That's something, at least.

Saturday, we were free and today we're paying the price.

Absence tally: 8 absences out of 14 school days

*Qvar is her asthma controller medication, but that's what she calls anything that comes through the spacer.