Big Gym Day!

KayTar participated in the Special Olympics today! They have a young athletes division for kids ages 2-7 and her school district participates in it. When I told her that she was going to ride the bus today, she zoomed around the room dancing and chanting, "I get to ride the BUS! I get to ride the BUS!" Then she stopped, looked at me, and said, "Are you kidding me?" I assured her I wasn't kidding and she went back to her happy dance. Then I told her she was going to go to a very big gym, too, and that made her even more excited. Her first words this morning, while she was still in that twilight state was, "Ohhh, I get to go on the bus to the Big Gym!" It was a very exciting day for her.



She did the bean bag toss (and made all of her tosses, too).





She played a little soccer.



She hit a few baseballs.




She played with the big parachute.



Then she discovered her sport, basketball.



(this one is so blurry, but it was the only one where I caught her signature move, the single leg kick)





Then it was time for some racing.





She talked her aide into taking her back to the basketball hoops!



In this picture she is telling the station attendant that he is supposed to be guarding her.



So he did as requested.



And she scored!



All in all, it was a really wonderful experience for her and I'm sure she'll be talking about it for weeks to come!

My kid is normal.

Okay, so that's a lie. But she is ALMOST normal, at least developmentally speaking, according to our pediatrician at her well-child check today.

She got gold stars of mastery for:

* FINE MOTOR
* COGNITIVE
* SPEECH

She is still delayed in the gross motor arena, but we didn't expect to hear anything different. She was able to do all the tasks she was asked to do, except for standing on one foot without support. She can jump with two feet! She can walk up the stairs without holding on (using one of her legs, the stronger one) if I am behind her to ensure she doesn't rock back too far! She can stand and scoot forward in her skates using a shimmying motion! She's getting there. She still can't run, she still struggles to stand or walk on uneven ground most of the time. Her balance and muscle tone just aren't quite there yet, but she is steadily improving.

She is 39.25 inches tall (50%) and weighs 33.5 pounds (45%)! The tube triumphs again!

She hasn't missed school in 3 weeks!

She hasn't had an episode in (almost) 6 months!

She has even been eating a bit more by mouth!

Basically, you know, HOORAY! Four is off to a wonderful start.

1460 days in the blink of an eye...

On the last day you were three...

You were sick and feverish, and even vomited on your chosen dress for the day (and then some).

You had pink-vanilla cupcakes as requested. You ate none.







There were princesses galore.


You received a ridiculous number of gifts and surprised everyone by declaring this transformer the most coveted gift of the day!



You tried out your skates and did surprisingly well.

You managed to have a wonderful party, even though you weren't feeling so great.

Here's to four, baby girl!

A conversation...

KayTar: Look at my markers, BubTar. They're magic!

BubTar: No they aren't, KayTar!

KayTar: Moooom! BubTar said my markers aren't magic!

Me: BubTar, just let her pretend.

BubTar: But they aren't magic! Someone just made them do that so kids will THINK they are magic, but I'm too smart for that.

Me: BubTar, don't be so cynical.

BubTar: What? Is cynical another word for SMART?

Me: (laughter)

Children's book recommendations?

[Nearly] 4 year old girl:

Likes: Flowers, princesses, fairies, hearts, butterflies...you know, sugar and spice and everything nice.

Reading style: She likes to read to herself aloud. She can read nearly any word, but her attention span is more age appropriate. If a page has too many words, she has difficulty following the lines properly on her own (but that doesn't mean she wants help, she makes this clear)

6 year old boy:

Likes: Adventure, outer space, Star Wars, Legos, Magic Treehouse books...generally, snips and snails and puppy dog tails.

Reading style: He loves to read chapter books to himself. He can read through a Magic Treehouse book in a few hours, which makes me think perhaps we need to bump the difficulty up a bit. He is an avid reader. Print that is small might be a deterrent, making it appear to be too difficult.

What would you recommend?

Monkeying around

Yesterday morning I was feeling especially silly and decided to give all of KayTar's instructions in a mixture of monkey-speak and sign language (when she needed a bit more cuing). It went like this:

Me: (hand her her shoes) OOOO-OOO-aaa-aaa!

K: Mooooom, you NOT a monkey.

Me: OOOO-OOO-aaa-aaa-AAAA!

K: Mom, talk in your own voice!

Me: Ooooo-OOOO-aaaa!

K: Mom, are you just joking? (slightly concerned that I might actually be morphing into a monkey)

Me: (nodding and smiling) OOO-OOOO!

K: Ohhh! Okay.

Then she marched off to put her shoes on, just like I had requested. The rest of the getting ready routine was surprisingly easy to communicate using only monkey sounds and a touch of sign. Then she went back to tell me, "You NOT a monkey!" So I started switching up the animal sounds.

K: You NOT a monkey!

Me: Baaaa-baaa!

K: You NOT a sheep!

Me: [elephant trumpeting noise]

K: You NOT a elephant!

Me: Bark! Bark!

K: You NOT a dog! Penny is the dog!

Me: Meoooow.

K: You NOT a cat! Peanut is the cat!

Me: Neeeeigh!

K: You NOT a horse!

Me: Mooooooo!

K: You NOT a cow!

And so on and so forth until I ran out of animal noises and she asked me to go back to my own voice. I got a kick out of it, but I wasn't sure how much she enjoyed it. She giggled, but seemed to hold on to that underlying anxiety that I had some sort of underlying health condition that was turning me into an amorphous animal.

After school, I asked her, as always, "What was the best part of your day?" Usually she says, "Playing princesses in Ms. G's class (her inclusion class). This time she answered, "Making animal noises with you at home, Mom." and gave me a big hug.

And that was the best part of my day.

Proof that we're alive...

All is well, I'm just feeling a little tongue tied at the moment.
I'll be back soon(ish).

Pssst...

I'm over at Hopeful Parents today. Come say hello, it is my first post over there!

Just follow KayTar, she knows where she's going.

Glasses found!

They were hiding under a yearbook in BubTar's closet. Who would've guessed?

[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

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