Kiera's Road with CDKL-5

Things are going okay right now, but Kiera's seizures are still up and we are choosing to ride them out...of course we have the rescue medication and all, but we have learned over the years to not jump every time she goes through these cycles.

last week we had to put into play her new protocol for aspiration episodes while at home. She had a emisis last week but her 02 sats did not drop this time ( they don't drop every time when she throws up) but the plan was put into play and Kiera did well.

I have always said that if I ever needed to go through any type of surgery, I will not complain what-so-ever only because Kiera has gone through SO much in her last 23 years and all the surgeries were because my husband and I made the decision to go ahead with each and every one of them. Kiera had no say in the matter. Two weeks ago I had to have something done and I have never been put under in my whole life. I needed to have an IV and it was placed in the bend of my elbow... wow, did that hurt! I started to think about every time Kiera has had to have IV's and she can have one in for quite some time, and I was feeling the pain....? what does Kiera go through every time?

On a more positive note, our organization had just received our 501(c)3 status!!! We are now listed as a registered non-profit organization. Our name is 'International Foundation for CDKL5 research' (IFCR) Our web site will be launched very soon. We have a lot of work to do this year and our hope is to find more ways to fund the research that so desperately needs to continue so our dream of finding a cure can be more attainable.