[Almost] Weekend Update

1. School Drama.

It totally diffused itself. I spent all weekend and week studying SpEd laws and putting all of my ducks into carefully orchestrated little rows and then yesterday I received a phone call from the special education coordinator who said, "I spoke to my supervisor and if you can just get us a letter from your pediatrician stating that KayTar has an underlying medical reason for the frequent absences, that will take care of things." TA DA! I have a feeling that she brought up homebounding to her supervisor who quickly set her straight, but that is just my inference. Regardless of the reason, I WIN! She keeps her placement and I don't have to send notes for every.single.absence. (She's had two just this week, Monday for the allergic reaction and today for another fever.)

2. Allergic Reaction.

We are now a peanut-free household. Because trace amounts of peanuts from cross-contamination were the only commonality between the two reactions, and because it was the only allergen she showed a response to, that is thought to be the culprit. Me? I'm slightly terrified now, because if that was her reaction to TEENY TRACES from cross-contamination, what in the world will happen if she gets a hold of the real thing? (Don't answer that, I already know.) I'm already tempted to never sleep again after realizing she was reacting all night long and I didn't even think about that being a reason for her restlessness. The pediatrician's statement that "The good news is she didn't anaphylax while you were sleeping." is both comforting and terrifying because, OH MY GOD, what if she anaphylaxes while I'm sleeping?! Such peaceful thoughts to lull me to sleep.

3. Insurance.

As of Saturday, the kids lose their coverage. We've gotten everything worked out, except for the fact that Josh's HR department seems completely unable to do their jobs and although we've been asking for certain paperwork for WEEKS, they still haven't done it. Urgent and time sensitive are foreign concepts to them, evidently, so my kids are going to lose insurance coverage, at least until our appeal can be processed. We filed it today, with absolutely no help from his HR department, so the coverage will lapse during the time it takes them to process the appeal. It is resolvable, thankfully, but it would have been taken care of weeks ago if his employer would have put in one teeny, tiny ounce of assistance. I'm clearly not bitter, but I may have said something to the effect of, "I WILL THROTTLE THEM!" when he told me that although they told him last week they had faxed the proper information, yesterday after he left them several messages, they emailed him and sheepishly said, "Can we get the mailing address, too, so we can send a hard copy WHEN WE FAX IT." making it clear that they actually never faxed the information and just told him that to make him stop asking. But no, I am clearly not bitter about this or the fact that if they just offered comprehensive AFFORDABLE insurance, we wouldn't be jumping through these hoops at all. Not bitter.

4. Sick, sick, sick.

KayTar is sick again. SHOCKER. It looks like another upper respiratory infection, her illness of choice, but I think we're going to go see the pediatrician today to be on the safe side, since as of Saturday she is no longer insured. (NOT BITTER, THOUGH.) Josh is once again relegated to the land of fairies and princesses. It keeps the magic alive only getting to sleep in the same bed every couple of weeks or so. ;) KayTar talked my ear off all night long, as she does when her fever spikes, exclaiming things in her sleep, "Stylish! I'm so stylish!", having conversations with me while she was awake, and dramatically overreacting when I had to use the bathroom, "But WHY, Mom? WHY did you LEAVE ME?!". Thank God for coffee.

Biopsy Results:

POSSIBLY INDICATIVE OF MITOCHONDRIAL DISEASE, BUT NEEDS FURTHER TESTING TO CONFIRM.

Of course! This is after all, only a slight variation of the "ABNORMAL, BUT NONSPECIFIC" that we here at the Journey are famous for.

Our pediatrician called me yesterday and read the official report to me, which noted a decent sized list of abnormalities in her muscle tissue at the microscopic level, though, evidently it was not quite enough to say with any certainty if she does or does not have a mitochondrial disease. It didn't rule it out, though.

Normal people hope for normal test results, negative test results; we hope for test results that are abnormal enough to give a crystal clear diagnosis for once, one sparkling, shining, this is what your child has, diagnosis. It may not even exist, we may always live with the questions without answers, we might always start conversations about KayTar with, "Well, she doesn't have one broad umbrella diagnosis, but..." In truth, I earnestly hope it does exist and finds its way to us one day, a cosmic path crossing in which the Universe slips an envelope into my hand, whispering, "This is it. Really it." before continuing on its busy way.

Well, that's one way to wake me up.

Last night KayTar slept fitfully, moaning, crying, waking, coughing...I finally brought her to our bed, so we could all get some sleep. This morning when the boys got up and ready for work and school, I stayed in bed with her because she was nuzzled against me and if I had extricated myself, she would have woken up and after last night, I wanted her to get a bit more sleep. We dozed together and the next thing I knew, KayTar was tapping on my shoulder and saying, "Mom, look at me. My tongue is hurty." I rolled over, expecting her to have a sore throat, instead I saw this:








That was NOT the most peaceful way to wake up. Immediately my partially functioning brain did the math:

lip swelling + tongue swelling = anaphylaxis

I grabbed her epi-pens, benadryl, and my cell phone. I called the pediatrician. I usually don't call the pediatrician unless I'm returning a call. I prefer email as I find it much less disruptive, but panicked pre-coffee minds don't really think about things like that. She answered, told me to give her a dose of benadryl, wait 30 minutes, give another dose if needed, and watch her breathing...if she started to struggle, give the epi, go to the hospital. A little while after her second dose of benadryl, the swelling stopped progressing. She is still sporting the Angelina Look, but it isn't spreading or getting worse. According to her, her tongue feels better, too. WHEW! I'm supposed to keep her home today (perfect timing, right?), give benadryl every four hours, and hope that we won't have anymore excitement today.

As for what triggered it? Who knows.

[speculation] KayTar had a homemade cookie last night before bed. The ingredient list was innocuous; butter, sugar, flour, eggs, cream of tartar, and cinnamon. Cinnamon was a likely suspect, but then I remembered she frequently snacks on cinnamon rolls (sans icing) without any kind of problem. The cookies were made in the same kitchen at the same time as cookies containing peanut butter and peanuts, so the only other thing I can think of is cross-contamination, though with her borderline numbers I don't know how likely that is. [/speculation]

The pediatrician said she was likely reacting all night, causing the fitful sleep and coughing, but I didn't think to check her lips for swelling in the middle of the night. I guess I will from now on, though.

The allergist did say that if she continued to have episodes of swelling without cause, we might need to do immune testing. I'd prefer a peanut allergy to an immune problem, but I usually don't get a vote with these things. For now, though, I'm just glad that the swelling is no longer progressing and that I didn't have to jab an epi-pen into her little thigh and rush her to the hospital today.

It has been that kind of week.

Monday:

School holiday.

Tuesday:

KayTar missed therapy due to severe light sensitivity. We got KayTar's wonky allergy testing results and find out her permanent special education teacher quit for personal reasons and they have no viable replacement. I was very frustrated to learn this because she will likely have a string of substitutes not properly informed of her variety plate of medical issues. I really liked her teacher, too.

Wednesday:

Nothing of note happens. [calm before storm]

Thursday:

I received a letter from KayTar's school saying that she has missed 31 days of school and from now on, we must provide a doctor's excuse for each absence, even if it is only a single day. After talking to a few friends with school district experience, I decided to call the special education coordinator and find out if accommodations for this can be written into KayTar's IEP to save us co-pays and time.

Friday:

I called the special education coordinator about the absences and she assured me it is not a problem, she would talk to the registrar and clear up the confusion. Then she called me back and said that because of KayTar's frequent absences she might be released from the program, because there are kids on a waiting list who would utilize the slot more appropriately. I reminded her that I was only calling to see if accommodations can be made in her IEP to facilitate her absences, since we cannot keep her from getting sick. She said she understood that she gets sick a lot, but insisted it would be better to have a child who COULD be present using her slot. That was the bottom line. Then, I lost my shit.

****

KayTar has been absent a lot. 31 days is a lot. 40% of the time, actually. I understand that is significant. I also know KayTar hasn't been absent once when it wasn't necessary for health reasons. She missed 15 days for her surgery and post-op recovery. The remaining 16 days were due to a variety of infections, all including fevers and some including vomiting. By the school's own standards, she wasn't allowed to come when in that condition. At the beginning of the year I spoke with her teacher about this very issue, she assured me that it is a special education program and they are understanding about absences and medical problems, as long as I send notes. I emailed her before every absence and sent notes after she returned. Only 8 of her absences did not have a doctor's excuse, because they were only 1-2 days absences that resolved before necessitating a clinic visit. As soon as I received word that it was problematic, I contacted them to rectify the situation (which kind of seems like the biggest mistake I've made at this point). I don't know what else I could have done, short of magically making her a healthier kid. She even had surgery this year to improve her nutrition and also cut down on infections. We've done everything in our power here. I don't think it is right that her education is in jeopardy because she is a sick kid. We've fought tooth and nail to get our sick kid proper insurance, I don't want her schooling to be the same kind of battle. Is it even LEGAL? It sure doesn't seem like it should be. Of course, it doesn't seem like it should be legal to deny a sick kid health insurance either, but by now we all know that isn't the case.

If you happen to have any information that might help, words of wisdom, personal experience, anything really...please leave them in the comments. This is our first year dealing with the school system and I am not well-versed in these laws. The special education coordinator said she would check on the next steps, the steps to pull KayTar from her classroom from the sound of it, and then call me on Monday. I want to have some idea of how to approach this by then. I don't want her to lose her classroom situation, the routine and structure and peer interaction are important to her. Her inclusion time is important to her. Her frequent illnesses rob her of so much already, I don't want them to also take her school experience away.

Chatterbox

She walks up to me with our phone in her hands. She looks at it distastefully and said, "Mom? Where is Dad's Blackberry? I need to call G (my mother)!" She knows how to read, therefore, she knows how to make calls from Josh's Blackberry on her own. The jumble of numbers on our home phone mean very little to her and she looks at it as it is beneath her. What sort of phone only has numbers?

Josh is sick with a migraine. I tell her, "I don't know, K. Daddy probably has it in the bedroom with him, but he's sick. I can help you call G on this phone, though."

She ponders, letting me know it is a bit of an inconvenience, needing help to use such an archaic piece of equipment, but she agrees.

She marches through the house with the phone, chattering away. She tells knock-knock jokes, both the standard ones (Why did the chicken cross the road?) and those of her own creation (Why did the throw up go in there? Because it wanted to be in the bucket! Art imitating life.) She talks to my mom and then to my dad, back and forth between the two of them for at least a half an hour. She points at things, "Oh! See that? What do you think of that?" unaware that they can't see what she sees.

I follow her into her room to watch her talk and I see the phone sitting on her little table. I pick it up, to make sure my parents are still on the line and haven't been forgotten. KayTar screams. "No Mom! Don't take it! G is waiting for me to put on my Snow White dress so she can tell me how (falsetto voice) BEAUTIFUL I am. Put that phone DOWN! Please go to the living room now." I oblige and listen from outside. "Okay, okay. Hold on, G. I have to find my shoes. Oops, I need to find my crown and wand. Okay, okay, okay. How do I look?" She giggles with delight, pleased with my mom's answer.

Once she is done with the fashion show, she comes back into the living room, still in full princess regalia, and continues to jabber and tell jokes. I hear my mom through the phone after a rare patch of silence, "Go ahead and give the phone to your mom." KayTar says, "No, no, no. Wait, wait, wait. Just one more joke. Just one more and one more and one more joke." After what seems like an endless round of jokes, she relinquishes the phone and flutters away to play with her brother. I'm left in her wake, marveling at the sheer delight of her, so little and so big all at once.

Predictably unpredictable

Yesterday KayTar had an allergist appointment to get her RAST results.

She tested negative for eggs and tree nuts, but borderline for peanuts.

Exactly borderline.

Negative is LESS THAN .35, her peanut level was .35 EXACTLY.

That's our girl, slightly abnormal, but never clear cut.

With such borderline results, there isn't an across the board recommendation for avoidance. It seems to be our decision in the end, so long as we are never without Benadryl and her epi-pens. RAST levels aren't always indicative of the strength of a reaction and the deciding factor is what happens when she actually ingests the allergen, which is also a little unclear.

She reacted strongly to the Blizzard; peanuts are the only allergen we could place at the scene of the crime and also the only allergen she showed any response to. She has eaten a small amount of peanut butter once since that time, I gave Benadryl immediately through her g-button, and she never reacted (though, she did have runny stool the following day, but that could have been from another cause altogether). The pediatrician said that she likely would have had some reaction if peanuts were the culprit, but the allergist said that sometimes Benadryl is enough to occlude the reaction if given quickly enough.

If the decision lies with us, I think we are leaning towards avoidance at this point in time. I do feel reassured that we have the epi-pen, in case something does happen, but I never want cause to use them. Even if there is a slight chance of reacting negatively to peanuts, I don't want to offer them to her. At the same time, I'm a bit torn because her diet is already so severely self-limited, saying no to any food seems like sacrilege. In the end, though, I think the possibility (even a very slight one) of anaphylaxis trumps my qualms about limiting her already limited diet. We'll keep an alternative, equivalent product in the house in case she wants some, but Josh and I are both more comfortable avoiding the (ever so slight) possibility of a negative reaction.

As we laid in bed last night, we had a good chuckle about the results. It is just like her to give us a little something that indicates a problem, but she never gives up enough information to yield an answer with any kind of certainty to it. Take this one instance and multiply it hundreds of times over and you've extrapolated the KayTar experience, abnormal yet nonspecific to the Nth degree.

I still think about the answers.

I want to write about something and I just can't seem to, at least not with any flourish or skill. It comes out garbled and contrived, a simple rearranging of everything I've ever written in this space.

We know.

We don't know.

It matters.

It doesn't matter.

I'm anxious.

I'm cool as a cucumber.

Every bit true and untrue depending on the moment being surveyed.

The truth in this moment is, I've been thinking quite a bit about answers lately. I've had the flutter of hope in my chest and the churn of anxiety in my gut. The truth in this moment is I hope they exist, even if I can't quite allow myself to fully believe it anymore.

****

Dear Super Fantastic Pediatrician,

I have a little theory and I wanted to get your opinion on it, when you have time. KayTar hasn't had an episode in over 130 days now, by far the longest stretch she's ever had, and none at all since her g-tube insertion. (knock on wood) Their sudden and prolonged absence made me wonder if they could have been nutritionally-induced, so I've been reading here and there, trying to piece things together. Could they have been hypoglycemic episodes?

I thought about all of her possible triggers; travel, excitement, waking early; and a common denominator is that in all of those situations is that it is unlikely she would have eaten anything or drank her Pediasure due to the level of excitement and activity at the time. Of course, they happened when she was ill, too, and her nutrition suffers so much when she is sick. Her glucose levels have always been quite low when we've gone in for dehydration or illness, and she has always had clusters of episodes around those times.

The symptoms seem to fit; altered level of consciousness, seizure, vomiting, unresponsiveness, and lethargy; and hit all of the parts of the episodes that are always present (minus perhaps the seizure activity, though she does have those ocular movements during the episodes). Sometimes she has light sensitivity and headache, too, but headache can be triggered by hypoglycemia. After she comes out of the episode, she is usually ravenous. It is the only time she feels and acts on hunger, the only time the sensation seems to breakthrough for her.

I don't know if there is anything to it or not. She's only had labs run once while she was actively having an episode, but I checked them and it was only a CBC with differential, no chemistries. Right after she had her g-tube inserted, she had that week of almost episodes, remember? She would use the same descriptive language, but it never escalated to the same level and we were able to stop them by adding an additional feed. Thinking of that combined with the sudden lack of episodes, made me wonder! Let me know what you think when you get a chance.

****

Our pediatrician thinks there might actually be something to this little theory I've cooked up and she's going to run it past the geneticists and get their take on it, too. It has been wiggling, partially formed in the back of my mind for some time, and a conversation with Natalie and subsequent conversations with Josh really solidified it for me. After a little research, I came across the predominate clinical manifestations of hypoglycemia and I was speechless; altered level of consciousness, seizure, vomiting, unresponsiveness, and lethargy...the ever present, major symptoms of her episodes. It has been 140 days without an episode and the only difference is that she is now receiving steady, adequate nutrition. Who knows if there really is anything to the theory? I certainly don't, but I wonder just the same and hope that maybe, just maybe this feeding tube has done more than we'd ever have dreamed possible.

****

The day Obama was elected, KayTar had a muscle biopsy. Tomorrow he will be inaugurated and we still do not have the results of that biopsy. I can almost see them, swirling in front of me in the future just out of reach. I don't know what they will tell us or even what I hope to learn from them, just something more than we know right now, I suppose. One more piece of this massive, beautiful, delicate puzzle.

Nice while it lasted.

No one in our house has been sick this year!

KayTar hasn't had an episode all year!

I haven't emailed our pediatrician once this year!

My kids have not been absent from school a single time this year!

KayTar hasn't had to go to the hospital all year!

KayTar hasn't vomited at all this year!

Neither of my children have been to the pediatrician's office this year!

Referring to this post, of course. We made it 13 days, though, not too shabby! Monday, if her fever and wet cough haven't resolved, we'll lose another item on the list, but the two items I care most about still remain true and that is more than enough for me.

Sniffy tickles

I have this habit of exaggeratedly sniffing BubTar's neck because it tickles him and makes him giggle like nothing else.

Tonight at bedtime, I was cuddling with him while he read his reading assignment to me, and I just couldn't resist the urge to interrupt the story with some sniffy tickles.

I said, "Hey Bub, do you think you'll remember these sniffy tickles when you grow up? The way they make you laugh and laugh?"

He looked at me and said, "Well, I don't know. Will you not give be able to give me sniffy tickles when I grow up?"

I said, "Well, I guess I can, if you want...but you probably won't by then."

He paused for a moment and then questioned, "But if I do?"

I smiled broadly and said, "Sure, buddy. I'll drive to your work every day and give you sniffy tickles at your desk. How does that sound?"

Then he really laughed, I'm not sure if it was the ridiculousness of me giving Grown-Up BubTar sniffy tickles at work or the absurdity of him ever growing up and having a job in the first place. Today his big plans for the future consist of building a Death Star with his friends, cruising the galaxy, and destroying black holes for a living.

We finished our story and I kissed him and tucked him in. Then I came downstairs and wrote this, my eyes full of tears that threatened to spill out out over my cheeks, because tonight I realized that one day my baby, my first baby, will not need our sniffy tickles anymore.

Wordless Wednesday: Bathtime

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For Special Exposure Wednesday, click here.
For another cute bathtime picture of KayTar, click here.

Creep

I was walking down the frozen food aisle and a man down the aisle met my eyes. I smiled. I always smile if someone meets my eyes. I turned the corner and continued to shop and felt eyes on my back and turned. It was the man. He was again on the same aisle, hovering a few shelves away. I looked up, he looked down.

I turned the corner and continued to shop. I saw the man pass my aisle and then double back, waiting at the end. Waiting and watching, me. I looked at my list. Looked at the shelves. Dawdled. I pulled my cell phone from my purse and put it in my pocket. I looked up again, he was gone. I exhaled.

I walked out of the aisle and there he was again, a few paces behind me. Up and down every aisle, he was there. Just behind me. Waiting at the end of the aisle. Empty handed. He was not shopping. Not shopping for groceries, at least.

On the bread aisle, he approached me, too close. "You again." he said flatly, no smile. Like it was happenstance, like he hadn't been matching my pace for thirty minutes, watching me as I shopped, as I chose food for my family. "What is your name?" I answered, my insides screaming, my hand twitching towards my phone. "Would you like to go somewhere and talk with me?" "Uhh, no thanks. I'm shopping." My heart skipped, my stomach lurched.

I walked quickly to another part of the store, calling Josh as I walked. I hid for a moment and spoke to him in hushed whispers, looking this way and that. I explained, told him that I'd be calling him when I left the store, to keep the phone close. I walked out of my little end cap corner and there he was again, reading a package. I walked briskly to another portion of the store, weaving through aisles, making awkward turns. My heart doing double time. I called Josh again, "He found me, but I think I've lost him again."

I headed to check out, hoping that someone would stand behind me in line, blocking me from view. No one did. As I was checking out, I saw him again. He didn't see me this time. He headed towards an exit, still empty handed, still looking. I thought about asking the clerk to have someone walk me to me car, I thought about blurting out, "A strange man has been following me throughout the store." But I kept quiet. Even as I held my tongue, I wondered how many others had had this same feeling in the pit of their stomach and made the same decision, I wondered how things turned out for them in the end.

I paid for my groceries and headed to the other exit. I called Josh again as I walked through the parking lot, going much further out than necessary in order to avoid nearing the other exit, my heartbeat whooshing in my ears. I loaded the groceries quickly and locked the car. As I drove away, I passed the other exit. There he was, arms crossed, staring at the doors intently, still waiting and watching.

Packing

Bolus tube
Bolus syringe
Rinse syringe
Red tip
Pediasure
Albuterol
Spacer
Zofran
Lortab
Benadryl
Epi-pens

And that's just for a DAY TRIP.

KayTar and I are going on a little day trip today with some friends. We headed to a big playdate in Austin, friends from Dallas and San Antonio are driving in, too! Some of these ladies I've known since KayTar was born, but haven't met them all in person yet so I am quite excited, strange packing list notwithstanding. This is the first time we've ever been comfortable enough with KayTar's health to do something like this (drive FOUR hours to and from a strange place in a single day), so it feels a little victorious, too.

****

It was a complete and total success! This was the first time, possibly ever, hat we have made advance plans (by a month or so) and not had to cancel them at the last minute due to a KayTar-illness. KayTar and her friend were so well behaved on the drive and we all had a great time. It was so nice to spend time with everyone!

I packed all of her just in case meds for episodes and asthma and allergies, but didn't have to use any of them, I only used her feeding paraphernalia. It has been 131 days without an episode! (knock, KNOCK, KNOCK on wood) I can hardly believe it. Six months ago we never would have tried something like this. Her episodes very often involved travel (by car or airplane), or being woken early, or excitement...we hit all those high points yesterday and she remained, delightfully, episode-free. In the end it was more than a little victorious, we kept our plans and they were not interrupted by any sort of illness or episode...it was just one very fun day for everyone. One more gift of the new year.

Bossy the Cow

My dad teasingly calls KayTar "Bossy The Cow" because she tends to be a wee bit bossy (see hands on hips, above) and is much more likely to give you a command than a request. Every time he says it, she protests, "No! KayTar. Not Bossy the Cow. KAY-TAR!" It has become a little ritual between them and these photos seemed to say it all.

If you haven't yet, stop by the new group blog I'm a part of. It is more photo and less writing, if you're into that sort of thing. Hop over here to find out what new skill KayTar has learned or here to see a new photo of her I absolutely love.

Allergist Appointment

Yesterday I took KayTar to the allergist to try and get to the bottom of the Botox for Babies situation. It was our first time meeting the doctor and I was pleasantly surprised. She was intelligent and warm and totally captivated by KayTar, which is always a bonus. KayTar was in true form and had the doctor in stitches. At one point, while she was taking her history, she asked about our pets, what kinds, whether they were indoor or outdoor, and after I answered the questions, KayTar said, "Oh Mom. Now you're just making fings up." It was so hilarious! The timing was superb. She was on a roll that entire appointment, really. She charmed them all, the receptionist, the nurse, the doctor, the whole clinic.

It has always been interesting trying to introduce new doctors to KayTar's medical history as it is impossible to wrap it all up with a nice little diagnostic bow, but these days it is even trickier, because there she is in all her chatty, smart, hilarious glory, while I'm listing her totally invisible conditions. Brain lesions. Profound unilateral hearing loss. Feeding disorder. Gross motor delays. Chronic constipation. Neurological episodes. Asthma. A year ago, when she was globally delayed, you could see there was a problem at first glance...but now, there's not a trace of it left, not until it is pointed out. She's left the world of cognitive delays behind and impresses just about everyone she meets with that little noggin of hers. It might work a little differently, but it sure works efficiently. Her differences have by and large left the developmental realm and are squarely in the medical realm now. I have to admit that it is kind of nice that her challenges aren't immediately visible these days, but it does increase the number of inquisitive looks I get when rattling off her medical history.

Once we finished going over her sordid history and KayTar had satisfactorily entertained the physician, we got down to business. KayTar's initial reaction puts her at a high risk for anaphylaxis, because it involved two body systems, her skin (swelling) and her gastrointestinal tract (vomiting). The allergist didn't feel comfortable doing skin testing because of that, so she came up with a short list of allergens to be tested via KayTar's blood. She said that the Peanut Butter incident didn't necessarily rule out a peanut allergy, because the Benadryl might have occluded the reaction. So the short list was: peanuts, all tree nuts, and eggs. She also called in a prescription for an EpiPen Jr, given the high risk of anaphylaxis (does KayTar do anything small, ever?).

This morning I took KayTar to have her labs drawn at the hospital and it wasn't too traumatic. There were a few tears, but it didn't take three of us to restrain her like in the olden days. I don't think she's had blood drawn (outside of a finger stick or draw through an IV) since 2007! That is forever in 'Tar time. The results should be back in 1-2 weeks and we have a follow up appointment on the 20th to touch base. I'm hoping the tests do show something and give us a clear cut allergen to avoid, because otherwise, High Risk of Anaphylaxis will be lurking around every corner and in every bite of food. No thank you, I'd prefer to know what the enemy looks like and steer clear of it. The single lip swelling incident was more than enough for me, and after that day she momentarily couldn't breathe, I'd be perfectly happy to never see her in any kind of respiratory distress again. So hopefully, unlike every other test that has been run on KayTar, we'll get some easy, clear cut answers just this once.

Wordless Wednesday: Yesterday/Today

If you want a slightly wordier explanation, click here or here.

If you want more Wordless Wednesdays, click here.

Things I might never say again!

No one in our house has been sick this year!

KayTar hasn't had an episode all year!

I haven't emailed our pediatrician once this year!

My kids have not been absent from school a single time this year!

KayTar hasn't had to go to the hospital all year!

KayTar hasn't vomited at all this year!

Neither of my children have been to the pediatrician's office this year!

****

Now I must go FERVENTLY knock on wood, but that felt really good to say. It may never happen again. By this time in '08, all of those statements, except for one, were already untrue. I'm glad that, so far, '09 is shaping up to be just a bit calmer. Calm is good.

Fortune Teller

Let me look into my day planner crystal ball and read divine what the future holds for you me.

Monday, I see a small figure with a backpack...this might signify KayTar's return to school. I also see two other figures, an adult and a child, in a noisy building. I think I smell pizza. Perhaps this foretells a special lunch date for BubTar and I.

Tuesday, I'm seeing two groups of numbers; 8, 1, 5 and 1, 4, 5. I hear the high pitched sounds of displeasure that accompany the physical exertion of a certain small person when looking at the first set of numbers and feel a pricking sensation when I gaze at the second set. This must refer to KayTar's 8:15 physical therapy appointment and her 1:45 allergy testing appointment. I also sense a state of relaxation, somewhere in between these numbers, perhaps a result of both children finally begin back in school.

Wednesday, Thursday, and Friday are blank slates, waiting to be filled. I sense the happiness and peace that accompanies a return to routine and the rest and relaxation that come from having three blissful hours of alone time each day while the children are both at school.

I also see a stage, likely signifying registration time for KayTar's fine arts classes; the letters S, C, H, I, P, presumably referring to a new development in our ongoing insurance dilemma; and a pair of child size glasses and a dollar sign, representing the inevitability of replacing KayTar's lost glasses.

This post is part of the first Mission Monday of 2009! Stop by Painted Maypole's today to see the rest.

Boundaries

You may have noticed that I don't write about BubTar all that often anymore. He's getting older and wiser and a bit more private, and I feel less and less comfortable publicizing his life without permission. This was never something I gave much thought to when I began blogging, but as he's grown into his own little person over the course of the last year, I've found that I'm not as comfortable cherry-picking his life for blog fodder. He's a bit shy (many times when we are with a group of people, he uses me as a mouth piece, whispering into my ear to have me relay messages to other people) and I don't know how he would feel about the publicity.

Recently, I was looking something up on my blog (I do this more often than you might think, it is a pretty detailed record!) and he walked over to me and said, "Hey! Is that a picture of ME on that website? Is that KayTar? What is that? Is that a BLOG? Is it YOUR blog? Do you have a BLOG, Mom? Lemme see that!"

I said, "BubTar, please don't read over my shoulder. Go on now. Go play." (Smooth, no? He'll never suspect a thing!)

I don't want to have The Blog Conversation with him, because my blog is SECRET. He spends a lot of time with various family members and "MY MOM HAS A BLOG!" is pretty hot news to an internet-savvy six year old. So I'd prefer to avoid the topic for as long as possible.

However, if he is old enough to know what a blog is and recognize his role in one, then he's old enough to have some say in what I do and do not share about him in this space, but as I'm not ready to discuss it with him, I'd prefer to err on the side of safety and respect his privacy. He'll still be appearing in plenty of photos and occasional posts, but on a more discretionary basis, I suppose. I try to respect Josh's privacy in the same way, but as all of our stories are so interconnected, occasionally there is overlap.

In case you've been wondering where my handsome, intelligent, funny son has been hiding, there you have it. He's still every bit as handsome, intelligent, and funny...he's just a little older and a bit more deserving of his own privacy these days.

Good things come

If you were to ask KayTar what Santa Claus gave her for Christmas, she would matter of factly state, "No. [nuh-nuh-nuh] Santa didn't give me anyfing."([nuh-nuh] is her audible pause.)

I might then step in and say, "Yes KayTar, remember your dress up trunk and your Disney Princesses?"

She would say, "No. [nuh-nuh] G (my mom) and B (my dad) gave me those fings!"

You see, KayTar does not believe in Santa Claus, at least not in the way most children do. She believes he exists. How could he not with his picture plastered everywhere and his copious appearances both on television and at the local mall? She does not, however, believe he snuck into our house on Christmas Eve and left gifts for her. Her explanation is much simpler and logical. My mother and father spent the night at our house on Christmas Eve, so they must have been responsible for the appearance of gifts.

364 nights a year the four of us go to sleep at night and wake up again to utterly normal giftless mornings. 1 night per year, my parents spend the night and in the morning suddenly presents have appeared out of thin air. The only variable in that equation is the addition of my parents, so logically they must be the catalyst for this differing outcome. Brilliant, no?

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I have spent years worrying over her cognitive development. When she was still silent, I wondered if she would ever speak. When she began to speak, I wondered if it would ever be natural for her, or if she would simply parrot and label forever. When her vocabulary began to grow, I worried about her comprehension and cognition. Over the course of the past year, those worries have fallen away, one by one, and what has been left in their wake is an intelligent, well-spoken, beautiful little girl.

I don't know that I've done that transformation justice here in this space. The worries have given way to a pleasant silence that I reveled in. For once I didn't have differences to document or a condition to explain, I simply had a child who had, in one area of her development, finally attained much of what "normal" children attain, that and so much more. Then I realized you, all of you who follow her story, may not know that about her. You may not know what a bright child she has grown into, with razor sharp reasoning skills and a mind like a steel trap.

There was a moment in her ECI intake evaluation years ago that nearly knocked me off my feet, the therapist held up two animal flashcards and asked KayTar which was a dog. I expected her to do what she always did--nothing--but instead my silent toddler, my closed off mystery of a child lifted her clenched fist and knocked on the right card. My mind exploded into a thousand shards of light, she KNEW something. In there, under all the mystery and silence, she had learned something. Things were getting through to her, even if she wasn't getting through to us. She identified several animals that day and although her scores were well below her age level, when I called to speak with Josh, that is what I told him first. Our silent and slow baby, she knew something. There was so much more to her than what was readily observable, so much more than the doubts and fears. Every single day, we continue to be shocked and impressed by who that quiet little baby girl has grown into, her once imperceptible abilities have expanded beyond anything we ever thought would be possible.

****

On New Year's Eve, we had our friends over to play games and drink champagne. KayTar was up late, because she is always up late. We set her up in our room with Noggin, so she could calm down for the night and we could have a bit of child-free time. She tolerated it for a bit, but then decided she would much rather be a part of the action. She quietly snuck back into the living room and I called her over.

"KayTar, you have two choices. You can lie in bed quietly and watch a little bit of cartoons, or we can turn out the lights and you can go to sleep."

She replied, "No, no, no. Let me tell you something. [nuh-nuh-nuh] I can have THREE choices. One, watch TV. Two, go to sleep. Or three, play this fun game with you!" Then she widened her eyes and plastered a huge smile on her face. She knows she has to really sell the proposal.

After a few more rounds of extremely logical negotiations, tears, and an quick evaluation of the how-likely-is-she-to-vomit-vs-how-much-do-we-care scale...she won the debate and was allowed to watch the game for a little while. She wasn't awake when the ball dropped, but she still relished her brief victory.

"[nuh-nuh] Am I up right now? Am I watching you play this fun game? Did I have THREE choices?"

She does this every time she wins. It seems like disrespectful face-rubbing to an outsider, but for her, it is simply fact checking. She likes to be sure that is what actually happened. It is not maliciously motivated.

My friend L looked at me and said, "She's going to be brilliant, you know."

We reminisced about the child she was a year ago, sitting at the table with us on New Year's Eve, repeating everything we said and laughing at jokes she couldn't comprehend, mimicking both our words and emotions. Now here she is, fully herself with her very own words, logic, and emotions; our unexpected and most fervently desired gift having suddenly appeared out of thin air.