We spent the weekend in Nashville. Mike had a ball tournament. We were able to take Kynslee. The weather was perfect for her. She was such an angel! We had a really good time.
I hate writing this because I don't want to jinx us, but Kynslee has not had any seizures in almost 2 weeks. Well, she has not had any of the big episodes anyway. She has been having a lot of the "infantile spasms". In reality, these can be just as bad for her, but they don't look bad when she is having them. For some reason, she enjoys them. When she starts having them, she just smiles. He therapist told me that most kids love when they have them, it is like a roller coaster ride. I am thinking that I may give her the Klonipine (the medicine for the occasional big seizures) and just give her a 1/2 dose every other day, just to see if it stops these infantile spasms. I was going to start this last night, but backed out. It is hard for me to give her a seizure medicine, when she is not actually having a seizure. I know that it is used to prevent them, just scary. I feel like I am always walking on eggshells making the right decisions for her. I need to be so careful.
I have got to get my battery on my camera charged up so that I can get some updated pictures on here. I haven't taken any pictures of her in so long. She is getting so big. She does not look like a baby anymore! She is now a little girl! I can't believe she is going to be 2!!!
This upcoming week, Kynslee will have all of her therapy and then on Wed. she has an appointment at the g-tube clinic at Kosair. I think that her tube may be a little big. I can not get the tissue under it to quit growing and bleeding. It has to be somewhat painful to her and causes problems when we try to put her on her stomach. Hopefully we can solve this problem at the clinic.
I had my very first episode of feeling extremely protective and aggrevated at someone over Kynslee's condition. I have not had anyone yet, treat Kynslee any different or act "weird" to her. This weekend, at one of the ballgames, Kynslee was trying to talk. When she does this, she almost sounds like she is growling. It is a sweet little girl growl though. This lady (who also had a baby in her arms) turned around and gave Kynslee a look of disgust and said "what is she doing?" No one who knows me would believe me when I say that I simply just took Kynslee and walked away from her, but that is what I did. Afterwards, I was so mad and ready to find her and give her a few more words, but I didn't. I know that it was just her ignorance. I know that as Kynslee gets older and older and it becomes evident that she is not "like other kids" that this is going to happen more often. I dread it!
Anyway, on a positive note, our friends Brian and Michelle are getting to bring home their baby Isabella from the NICU. We want to wish them lots of luck! Have fun with your baby girl!
Hope everyone has a good week!
