Today, after taking the birthday boy out to his choice of lunch (Burger King? Seriously, BubTar?) we headed off to the Children's Museum for a day of fun. Turns out we didn't have any fun at all. KayTar went into an episode about 7 minutes after we arrived.
I felt like such an idiot, because when I woke up today "Episode" was not in my agenda nor in my mind at all. I was completely surprised by this one. I always kind of sense them coming, I know when to watch for them, I plan things close to home, I play it safe. I didn't do that today unfortunately.
It started out of the blue. She was fine one minute, walking and holding my hand, and then she said, "I need to carry you please." and I picked her up. She nuzzled into my neck and went limp. Even then it took me a minute to recognize what was happening, because it was so far from my mind today. I had to apologize to BubTar and tell him we had to leave immediately. On his birthday. Do you know what he said? "I'm sorry, KayTar. It's my fault we were at the museum, since it's my birthday."
*insert that shattering broken heart sound here*
I told him it wasn't his fault. KayTar just gets very sick sometimes and we have to stop what we're doing and get her home fast. He asked why and I told him her brain sort of malfunctions and it makes the rest of her body pretty sick. Then he said, "I'm sorry your brain malfunctions, KayTar." The boy is too sweet. Never mind it was ruining HIS special day, he was the one apologizing for things that have nothing to do with him.
We rushed home, and by rushed I mean spent over 30 minutes in traffic on the SAME STREET, and got home over an hour later. My mom came to the rescue and picked up the birthday boy and took him shopping at the toy store with his gift card. He bought 4 more Bionicles and finished building them all in the 3 hours he was at her house.
It has been a weird episode. No pain. No vomiting. No light sensitivity. Just the loss of her normal mental status and extreme lethargy. Oh, and the eyes. She's complaining about them and they have been moving like crazy. She'll only open her eyes for a few seconds at a time, but even when they are closed we can see her eyeballs swirling around back there. Here's the part that frightens me a bit, she's been lucid for an hour now, but she can't use her body. If I sit her up, she just slumps over. She can't sit, stand, crawl, none of those motor skills are intact. She can roll over, move her limbs, move her head, but nothing beyond that. It doesn't usually happen like this. Once she's back, she's BACK. I know that her history shows she always comes back from these, even if it takes a little longer than we'd like, but I can't help but worry that this time will be different because it IS different.
I'm supposed to be at school right now, taking my A&P exam, but instead I'm here because I can't bear to leave her like this. I sit close by and mark the time with the cycles of my worries and wonder when her little body will work again. I hope it is soon.
For the record, I really do think she'll come out of it all the way soon, she always does. It just makes me feel a little better to turn the worries into words, so I do.
ETA: She hasn't really come out of it, but she is asleep. She vomited not long ago and was able to sit up briefly for the bath, so that makes me feel better. I don't know if it is over or if she'll sleep for long, but I figured it was a good enough time to update. It has almost been 11 hours. I think that's the longest one yet. I hope she's better by morning. It has been really worrisome.
ETA again: It is morning and she seems to be totally back to herself. I might bring her in to the pediatrician for a quick neurological exam just to be sure everything is okay. This one really had me worrying.
Oh Kyla- how scary for you, how awful for KayTar and how wonderfully sweet of BubTar. I am thinking of you all and sending good vibes that she will be back to her royal self, soon.
Oh Kyla. I can't even imagine. I have to say though, you should be so proud of your boy. I doubt any of my children would have reacted as calmly and compassionately to the abrupt change of plans as he did. That's a wonderful kid you've got there.
Hope your baby-girl is back to herself soon.
That BubTar of yours is one fantastic guy! And you, well you are one dedicated and loving mom. I hope KayTar comes back soon, very soon.
What a sweet boy Bub Tar is. I hope she is back to herself soon.
Hugs to all of you.
Oh, Kyla. My heart aches for you whenever you have to go through this. It sounds so scary every time. Poor sweet little KayTar. And what a great kid BubTar is. He's a wonderful brother.
Please let us know when KayTar is back to herself. I hope it is soon.
Sending hugs ....
Oh, Mama, how scary!! I hope she pulls through soon!
Hopefully BubTar still had a great birthday ~ that kid sure sounds pretty awesome to me!
Oh god Kyla, how terrifying. My poor Kaytar. My heart breaks for Bub too.
Oh Kyla hon. This post just twists my heart in two for you all, but especially little Kaytar. I'm so glad she is able to talk and tell you how she is feeling, and that she can hear your comforting words during a time like this is also a blessing. Bubtar is such a big boy, so amazingly empathetic for someone his age. Thank God for your family for being near and able to pitch in. xoxo
Poor sweet girl and poor wonderfully compassionate boy! I am so sorry. It sounds very scary. I'm sure she will be back soon like you said. Good luck!
Oh, oh, oh, friend.
My heart breaks for BubTar today. What a sweet brother he is!!! You do such a good job with your kids.
I'm praying for KayTar that she returns QUICKLY and lively. Please keep us posted!!!
Sending many internet hugs your way to comfort you right now.
thinking of you Kyla and hoping Kaytar is back to herself soon.
kyla, i seriously almost cried when i read this. poor kaytar, poor bubtar. and poor kyla, trying to hold it all together and love them both with all her beautiful heart.
we got his letter today and B was so thrilled. it is on her bedside table right now as she sleeps.
Wow - BubTar is wonderful.
I hope that KayTar does recover quickly, that they find the reason quickly and that all your woes will go away soon.
I am so sorry you are dealing with this.
I pray for your family and Katie daily.
I think you are an amazing Mother.
Nathan is an amazing loving little boy.
What a blessing his is! I know you are so proud of your young man.
Oh! My heart snapped right about the time that BubTar apologized. Oh. What wonderful kids you have, Kyla. I hope the morning brings better times to your home.
Oh, Kyla. Oh, KayTar. Oh, BubTar.
Hugs to you all.
That big boy of yours gets to me every time. What a treasure of a kid...
Hope Kaytar will be ready to try the museum again soon.
Oh Kyla, and here I was popping over to wish Bub-Tar a happy birthday and check out the documentary evidence of frivolity. I'm so sorry this has happened again.
As an aside, talk about a power week for birthdays: Oscar, The Baby and Bub-Tar. Oh my.
What a sweet, sweet boy. I am sure that he will be rewarded for his patience and understanding.
I am glad that KayTar is better this morning. I hope that continues and it is a long time before the next one.
I'm so sorry for all of you! I know you must have been really worried yesterday. I'm so glad KayTar is better this morning.
That BubTar is just the sweetest, most sensitive young man. He's such a great big brother. I'm totally loving that boy! :)
Poor Babe. I'm glad she's feeling better today. I understand your anxiety. I always get it to. If we knew for a fact what the episodes are it would be easier to relax about it.
Have you ever shown the videos to the Episodic Ataxia specilist in So Cal?
Something to consider.
Happy Birthday Bubtar. He's the sweetest kid.
This is all so confounding. Bless BubTar for being such a compassionate Big Brother. Glad to hear KayTar is back to normal, but golly how I wish the doctors could figure out what switches on and off these things.
oh, kyla, your sweet boy and your poor lovely girl. what a day.
oh wow. I'm just reading your blog for the first time. you are amazing, woman.
Sounds like some kind of seizure to me. Poor KayTar. And Bub--what a gentleman you're raising.
You're an amazing mom. Prayers to KayTar and all of you!
How absolutely terrifying. I'm glad it seems now she's completely out of it. Maybe the entire time you thought she was out of it, she was still actually mid episode? Maybe this time it was just a long but relatively mild one?
Gosh, I can't imagine how incredibly scary. How sweet Bub is. Really. I just want to give him a hug for being such a good big brother.
My heart is breaking into a million pieces over all of this. It's so unfair to you all, and you are all so strong and empathetic to each other. Your whole family amazes me.
I want to be you when I grow up. Even thought I'm older than you.
I am so sorry that she had an episode on what was starting out to be a fun day for all of you...I'm sure she'd rather have played with you two than be sick...
BubTar's sweetness brings tears to my eyes...he's so sweet. Then again, they both are.
Oh, dear, what a horrible thing to have to worry about! Hugs to you all and fingers crossed that everything is good. And do you get to make up that exam?
W-o-w- My husband and I just stopped for a moment together and read this and recognized how lucky we are that none of our worries are this heavy. We feel for you and send you all our well wishes. Trust that intuition of yours. What a great boy you've got there. Your girl, too, who knows where to turn. You're lucky, too, in your own way, aren't you?
Oh my goodness. What a scary experience. I am sending prayers and positive thoughts to you both.
And what a sweet boy ButTar is. He sounds like an angel. Truly.
Just checking in...
Still thinking of you all. I really hope all is back to "normal". xo from the bumps.
your boy. he is good.
Kaytar sweetie. oh sweetie. if only your mumma could get inside and figure it out.
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