KayTar:
Last night she discovered the joys of YELLING REALLY LOUDLY in the car. She and her brother had a wonderful time shouting "CHOO! CHOO! CHOO!" in unison all the way home from the barber. Josh and I just basked in the glow of the normalness of the moment, and sighed about the fact that they now can work cooperatively to drive us insane. But the joy radiating off of KayTar as BubTar participated in a "game" she had created? It was priceless. The best part was that the excitement was started by the lollipop she was given by the barber. We never even opened her lollipop, she was just holding it and she had a sugar high. She actually licked the wrapper once or twice and said "MMMM-yyyy" (which sounds loosely like "yummy!"), and then she would sign "candy". We can only guess what might have happened had we actually OPENED the lollipop. Today on the way to take BubTar to school she shouted "Yay!" every 35 seconds or so...giggling all the while.
This morning she was watching cartoons in our bed with BubTar and I heard her shout "Ma! Ma! Ma!" so I went in to check on her and she signed "Mommy!" pointed to me, then signed "Sleep!" and started patting my pillow, demanding "Mommy, you must lay down with me immediately!" So I did. She snuggled right up next to me and patted my back so sweetly. She has suddenly become crazy about the cuddles. I am definitely loving it.
In medical news, KayTar is now officially off all preventative meds for 1 month. We are so overwhelmed with variables and the frequency of these episodes, we decided to eliminate all the variables we can. So the pediatrician and neurologist have agreed to letting her be off medication for a month to determine what is happening naturally in her body. If the episodes keep clipping along at this insane pace, we will be ready for a new medication. If they slow down to one every 2 weeks again, we will feel very relieved. If they continue happening at the current pace, I think we will ask to go ahead with the hospitalization, because it would be the best time to catch one of these on EEG. So that is the plan at the moment. Wish us luck!
BubTar:
I've been trying to sneak in extra time with him as much as possible, because I worry so often he is getting slighted in all of this KayTar business. Do you want to know the funny thing? When I give him extra cuddles, he'll say "Mom, is that ENOUGH??" Like he's humoring me by letting me love on him! Or when I sit down to play a board game with him, I'll play several rounds so he doesn't feel like our time is rushed and at some point he inevitably rolls his eyes and says "Okay, Mom, this is the LAST time I'm playing this with you." He is hilarious.
On Saturday, I decided to take the kids to the bookstore because Josh had to work and we hadn't been out of the house lately. We were all going to choose a new book to bring home and read. BubTar was so excited! He knew which book he wanted before we ever arrived. In the car, KayTar began fussing (which is odd for her) and when I opened the car door to get her out, I saw why. EPISODE. So I had to tell BubTar I was so sorry, but we had to get KayTar home right away. (see what I mean about the slighting?? we can't even make a bookstore trip without it being affected) I said that I promised we would figure out a way to get his new book that day, I'd just have to think of a plan. So on the way home, he gave me the play by play from the backseat:
"KayTar is CRYING!"
"Her eyes are closed!
"Now they are open!"
"Momma! Can't we go any SPEEDIER??"
"Oh! Oh! I think she's gonna FROW UP now!"
But when she would quiet down, even for a moment, he would say:
"She's quiet now, can we talk about the book plan?"
But she would inevitably start up again and he'd go back to taking care of her:
"Okay, I'm patting her hand now, Momma. She isn't crying anymore."
"Oh no, its not working, she started crying even though I'm patting her hand."
"Its okay, KayTar, Momma is driving speedier. We will be home soon."
"Momma, SPEEDIER! I think she's gonna FROW UP!!"
He is such a wonderful son and big brother. We really hit the jackpot with him. Today I was hugging on him and I said "How did I get so lucky to have you, BubTar? Did I win a contest? Were you the prize?" And he said "No Momma, I'm not a prize! I'm a BOY!" And I said, "Well, if you were a prize, you would be the very best kind of prize." He just giggled and said "Is that ENOUGH cuddling?" What a goober!
In band news, my mother is bidding on two children's guitars and drumset on EBay. BubTar is thinking of calling it "The Pajama Band", but he's not totally sure yet.
That's all the news for now!
9 comments:
The Pajama Band! That's great. Your kids sound really fun - my kids do those excellent yelling games in the car, too. Gosh, those never get old.
I like the name Pajama Band, too.
Bubtar sounds like a real trooper, helping Kaytar & you, even through his disappointment.
Good luck with the medical plans!
I totally teared up at your exchange with BubTar about him being the prize. That was so sweet.
I wish you much luck with KayTar. I hope that the episodes go down in frequency with the elimination of the meds. You continue to be an inspiration to me. I've been doing so much complaining on my blog and I'm not even facing anything so difficult. Yet you never complain. You are SO strong.
Please keep us updated with KayTar. I wish we were real life friends--I'd be glad to help out. I'm praying for all of you.
Did you already know sign language before teaching KayTar or have you learned along with her? Have you had "lessons"?
Natalie
"But the joy radiating off of KayTar as BubTar participated in a "game" she had created? It was priceless."
Ah isn't this true... when G initiates a game and A joins in, it always warms my heart.
BubTar does sound like just the right prize for you and your family. It's great that you appreciate him that much, and that he knows it (even if he objects to your demonstrations sometimes).
Good luck.
Can I "rent" Bubtar to be a fill in big brother for my Miss Em? I would love for her to have a big brother....and he sounds like the best of the best:). I hope that they can figure something out with Kaytar. The Pajama Band is a GREAT name!! American Idol watch out:).
I will tell BubTar all my friends (especially those of you in Canada, he is currently OBSESSED with Canada) vote a resounding yes to the Pajama Band.
Natalie: I knew a bit from classes in HS...but I'm basically relearning along with her. She surprises me with new words daily!
Angie: I'm sure BubTar would love to have an adopted little sister. He's all about making new friends.
Thanks for all the sweet comments about my sweet boy. He really has been quite the trooper in all of this and he deserves major points for it. :)
I just love the play-by-play.
Even though KayTar gets some special attention, he obviously still feels that he is a very important part of the family. And that is probably why he doesn't feel slighted. The evidence is with all that stuff he said to you. :)
Your posts are all so entertaining. :)
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