My sweet girl

Ugh...I hate the overwhelming feeling of not knowing where to begin because I have been such a slacker on posting....when am I going to learn???

So I don't know if I should include this, but this was a draft I started on June 5th--a month ago...it goes:

Kaybri has been doing EXCELLENT, and has been seizure free for 11 weeks now. It's crazy, I had to go and actually look that up on our calendar. I love that I don't think about that so much now, and that I don't worry about when her next seizure will be. She seems happier too. We can now focus more on helping her get caught up to where she should be developmentally. I love being a "normal" busy family that doesn't think it's a humongous risk to go to Mesa for the weekend and let her run around with all of her cousins in the scorching AZ heat. Of course I still get nervous, and we still are pretty strict about schedule and naps and such, but a few months ago there's no way that we would've ever thought about doing so much. We are truly blessed. I have definitely learned to be thankful for so many of the little things I think I used to take for granted.

Present time:

Kaybri had a seizure a couple weeks later. It was pretty short though and after an extremely hot day of play group at the park. I should've known better (but she had been doing so good); she had looked really flushed before we went to the park, and had a 99.3 temp. At the park she got really red, fast. We were there about 45 minutes and by the time we left she was really hot and started seizing in the car. I don't know if it contributed to the seizure or not, but it probably didn't help. Anyway, it has been 2 more weeks and she has done really good. We have been pretty worried about her lately though, but for other reasons. Ever since we started her newest medication a few months ago she has done great seizure wise, but her development has dramatically slowed and even started to regress. At first I thought, maybe I'm just over analyzing things, or looking for something to be wrong. But things that she used to do or say just a few months ago, she won't anymore. We can't get her to answer really any questions anymore, she won't say prayers or even amen, no words like "please, thank you, i love you" or any of her cute little songs. It is a fight to get her to eat anything, and she used to eat whatever I gave her. She is still very loving, cute and happy, but she was already developmentally behind and now it seems like we are losing even more of her. And because she can't communicate well, she gets very frustrated that we can't read her mind. I don't know what to do??? I think it's a lot of the medication that we put her on, but we finally found something that may be helping her seizures? We take her to a Developmental Pediatrician in August, and they're probably going to tell us she's autistic or diagnose her with something else. The doctors that she has seen, we've asked them about autism and they've all said she doesn't really do the main things they look for in autistic children, but she does do some quirky things that are often autistic characteristics. I can't believe my child that once was developing so quickly and talking more than most kids her age, is even being considered for autism. I probably shouldn't even write all this because everyone out there is going to think she's autistic. I just know the doctors that she will see will want to diagnose her with something, and it seems like autism has been the hot topic lately. I wish I knew what was going on with her. Sometimes I wonder if we ever should have medicated her, it never really helped up until 3 months ago and now look where we are. They all have had side effects like: hyperactivity, extreme drowsiness/dizziness, nausea, loss of appetite, irritability, loss for words, short term memory loss are just a few. Who knows how she's really felt, but I can tell she's had at least a few of the side effects from the way she acts.

Sorry to overload on the Kaybri saga, it just seems to always be on my mind. She hasn't been having any seizures, and that's all I ever wanted, I just didn't know/think there would be anything after that. We know so many have been praying for her and we know it has helped. Thank you all.