Tanner had a vision therapy session yesterday with a new therapist. She had been here once before, with his old therapist, just to meet us and get the "background" on who Tanner is and his environment and abilities, but this was his first session. I was not home and Brian came in a bit later. Our nanny was with Tanner. As some of you may or may not know, mouthing of hands is a common side effect for CDKL5 kids. The therapist proceeded to tell our nanny that the mouthing of the hands was simply a "bad habit" and "he knows better".  After our nanny tried to explain that it was a side effect, not a bad habit, she then stated that "we needed to be the adults and stop letting him tell us what he wants. it's just a bad habit".  When I heard this, I immediately contacted the therapist, provided her with a snap shot of side effects from the CDKL5 website, and told her that her comment was ignorant and until she educates herself on Tanner's disorder, she is no longer welcome in my home.  The reason I am telling this story is because lately, things have been said to Brian and I that are simply inappropriate. 
     Brian and I do not feel burdened to talk about Tanner or answer questions concerning him.  Just the opposite actually.  One of our jobs as parents is to raise awareness for CDKL5, which is the purpose of this website too!  But just like that therapist should have done her homework on Tanner, as she should do for each and every one of her patients, before treating them, our hope is that our family and friends and anyone who hears of Tanner's story, will go onlline and gather some information for themselves on what about 1200 children are suffering from today.  Google is an amazing tool!
     "What is the life expectancy for Tanner?"  I'm hoping that as you just read that question, you gasped at the fact that someone would ask us that.  But yes, multiple people have asked us that question!  I want to be clear that I am not writing this in anger at all!  The people who have asked it were trying to understand about Tanner and his disorder and they were sincere and concerned.  But that does not take away from the fact that this question is inappropriate and hurtful to ask us.  As Tanner's parents, it was one of the first questions we asked the foundation after his diagnosis, but the answer is unknown.  Since then, we have tried to live every day with 1 thing in mind...how can I make Tanner happy today.  Isn't that what we all want as parents, for our children to be happy?  We are discussing putting an elevator in our home so we can better assist Tanner as he gets older and heavier. We just bought a van to help transport him better in the FUTURE. We are setting up savings accounts for him to one day make that van wheelchair accessible, if he doesn't learn to walk. We are NOT buying grave plots or even thinking like that, and all that question does is cause us to think about the answer.  If you are curious about things like that, I understand your curiosity, but please go to www.cdkl5.com and educate yourself, so a question like that does not have to be posed to the parents of a beautiful baby boy who is ALIVE and as well as he can be.

On November 12, 2015, Tanner received his first dose of epidiolex, CBD oil. 3 weeks later we have seen a mild decrease in seizure activity but nothing to really speak about.  Before the oil, he would have anywhere from 250-450 seizures a day in the form of clusters of Myoclonic jerks or Infantile spasms. We are still not clear exactly which ones.  He would have an occassional tonic clonic, where his body shakes or his eyes dart back and forth very quickly and an occassional clonic, where only 1 side of his body shakes. Today, he is still having all of those, but seizures have decreased to 150-250 jerks a day.  No decrease in the others. These are the "possibilities" we heard about before starting the trial, from other parents of CDKL5 children:
     we could see improvements immediately
     some kids get worse before better
     it could take 30 days or longer to see results
     we could see positive results in personality, but maybe not seizures
     CBD oil works best on it's own, without other anti-seizure meds, and in small doses.
We will not be able to begin weaning Tanner off pharmaceutical meds for 90 days, so we are prepared for the chance that we may not see improvements for quite some time still.  There is also the possibililty that Epidiolex will not work for him.  If that is the case, there are other CBD oils out there with THC in them, which we have heard positive things about and our doctor said he would help us on our journey, even though we will be responsible for ordering and administering that oil all on our own.
The purpose of creating this blog site is so I can update our many many friends and family, on a daily or weekly basis.  Also, as a way to communicate and educate about what life is for us, for Tanner and for about 1200 other children living with CDKL5, in the world.  I have learned a LOT about being a special needs parent, in a very short amount of time and as I watch my son grow, I realize how hard it is sometimes to know what to say to us and how to support us. You may not get to know Tanner as well as some other kids because he won't communicate using words and he won't run around reaching for toys that are of interest to him.  But I hope to be able to teach you, thru this blog, about who Tanner is. His likes and dislikes, abilities and inabilities and how you can help.