Facebook Update

"Claire's only diagnosis is epilepsy and She has been seizure free for 17 months and off medication for 6. I thought when this happened she would just start talking but it's not happening. I wish I had answers. Claire is not progressing with her speech and has no interest in potty training. I don't want to look back and wonder what else I could have done to help her. No clue if we can afford preschool next year for her and the program she is in at the school is only 2 hours a day and not over the summer SO I went nutso at Walmart and bought every item to make any and every craft, sensory, fine motor skills, speech, learning development, creative project we can find on Pinterest! Jessica Siegel and Kendel Krause Hogan totally inspired me to do this kind of thing from Kendal's Facebook posts, so thank you!!! Anyone have fun suggestions let me know!!!!!?

CLAIRE CAN SAY HER NAME PEOPLE!

THIS IS THE FIRST TIME IN HER ENTIRE LIFE SHE HAS EVER SAID HER NAME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! April 17, 2015!

"Prettyful"

Only a week left until we are completely off the seizure medication and Claire has remained SEIZURE FREE AND is REALLY STARTING TO TALK!!!!!!!!!!! PRAISE GOD!

Update

Facebook Posts:



4/8/2015
Claire got to go to school today and she did good and has not cried or fussed today! Just sleepy! AND she is saying new things each day. Today she communicated with Jack saying "MY TURN" This is huge people!!!!!!!!!! Praise God. I know lots have been praying for her and the fact that she is doing so well on day 2 of this lowwwww dose is amazing! woo hoo!!!


4/7/2015
Yall please pray for Claire. We are in the process of getting her off of the medication because she is seizure free and has continued to be . . . Today we are trying again -Dr say no med in the morning and .5 ml at night. (Last time we tried it was TERRIBLE withdrawals) so please pray today is not so bad for Claire so she can be done with this stinky medicine asap. She is currently laying in my bed - kinda spaced out. . . not feeling well at all. 

3/31/2015
Can everyone please say a prayer for Claire. We are on the last week of weaning her off of the seizure meds and every day for last week she has been an emotional basket case (understandably). She is miserable. Can't stop crying, doesn't want to play..

3 am

Its 3 am and can't sleep. About 1/2 way through weaning Claire off of the Onfi and a year into Claire being seizure free. My Claire bear is HERE. She is present. She is happy. I know what she is feeling. She seems lighter and happier. . more confident.  I know I've posted this before but it just keeps getting better and better!. . Life is good. God is good.

More words. No Seizures. Less Medicine.

Something to drink
Yes
Shapes
Sky
Clouds
jump
morning
Car
Baby crying
"Agoooo" (talking to Luke)
Remi
Good boy
Off (talking to Remi)
I want it
I can have it
Dora
Boots
shirt
socks
pants
shoe
milk
juice
teeth
pretty
hair
head
nose
eyes
mouth
sad
I done
chips
cake
bowl
Daddy
Mamma
Here ya go
Go go go
She counts. . . and will start in the middle but actually get them right. . like "twelve thirteen fourteen"
She sings the ABC's. . . not in order, but she sings letters
Jaaaaaaack
Cereal



These are all the things we are hearing Claire say lately. We are on the 4th week of weaning her off of the Onfi. Pretty sure we have about 10 weeks left?? Still seizure free, Hallelujah! And she is putting 3 words together. Which is huge.
I almost feel like Claire seems/feels "lighter" It's like her personality is really coming out. I dont know if that is because the seizures have stopped or because she is on less medicine, or both. A huge side effect of the Onfi is aggression/irritability. And so what I have found interesting as she is coming off of the medicine is how LOVING she is. Omg. She runs up and just hugs me randomly, all day long! I am loving it. She seems way more affectionate. It is very exciting. Thank you for your continued prayers!!!

1 YEAR SEIZURE FREE!!!!

Today is Claire's first day of school & her 1 year anniversary of being SEIZURE-FREE!!!!! Praise the Lord! 

The past 2 weeks we have been to lots of appointments. The results from the Whole Exome Genetic Sequencing test was that none of the genes they tested are causing the seizures. We are doing more genetic and metabolic testing. Her EEG showed no signs of seizures, so we can be 100% positive that she really has been seizure free for one year! 

As of December 28, we have started the process of weaning her off of Onfi (the medicine she takes daily to stop the seizures.) It will take 12 weeks for her to be fully off of it. This is the only way to know if the medicine is stopping her seizures, or if she has "grown" out of them. So far, so good. No seizures! Please pray that she would continue to be seizure-free, and that we can get her completely off of the medicine. There is no telling all of the side effects that Onfi has on her, so the hope that she can be off of the medicine is really exciting. Pray that she continues to learn and keep talking!!!! 

Claire had her first day of school today and was SUCH a big girl! She will go to school Mon-Thurs 8-10:30 am.  I picked her up today and Ms.Curry said she did really well. She didn't cry when I left and fell right into the school routine. She was so excited when I picked her up and kept making sure she had her "Pack pack!"


".....I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for."
Jeremiah 29:11