Another month has almost come and gone.
Kiera has been doing very well health wise, we have been so happy about that.
Changing her diet to the RCF has made a big difference in her seizure control, but just over the last few days the seizures are creeping in a bit.
We have made a plan with Kiera's Epileptologist to start to decrease her Topamax in the beginning of the new year. We will keep our fingers crossed in hopes that the seizures do not invade her life for the worst.
The Doctor down at the Baylor College of Medicine has finished her research study that involved Kiera and 2 other young girls that have CDKL5. We just signed the consent form and hope to get to get our hands on the study very soon!
I am looking forward to talking with the other 2 families that were in this study also.
They are quite a bit younger than Kiera but I know how much it has helped me to be able to connect with all the other families through-out the world that are also dealing with CDKL5.
We had a Christmas gathering at Kiera's home last night. It was very nice, the house was full of Friends. Kiera was in a great mood even though she had a 18 minute seizure just the night before!
She wanted her voice heard and it was!
I love to see the attitude, boy does that put a smile on my face!!
Merry Christmas all, and have a very happy and safe New Year!!
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