Every mom worries about their children and whether they are making the right decisions, when it comes to just about everything! When I was pregnant with Tanner, I remember interviewing daycare centers with Brian and finding 2 that we liked, but 1 a little bit more. As we left to go home, I sat in the car and cried. Nothing bad had happened and both schools would have been excellent choices. But what if 1 of the teachers at the school we chose didn't like Tanner? What if he wasn't happy? What if it wasn't as clean as we thought it was? What if we make the wrong choice? If you are not a parent, this may seem very silly to you, but to me, I was about to drop my baby off in the arms of total strangers, having no idea if he would cry a lot or be happy or anything, because he's a baby who can't talk and tell me anything. I'm guessing a similar feeling came over most moms. Now imagine your newborn is now 2 years old and special needs, still non-verbal, and probably always will be. When he cries, is he in pain, does his stomach hurt, is he constipated, is he about to seize, does his head hurt, is he hungry, is he tired, did i accidentally pinch him when picking him up, does something itch....  He can't use his hands to point and completely non-verbal!  Is this cry CDKL5 related or typical baby related? Am i thinking of every possibility?
Over the past 2 weeks, we have increased Tanner's dose of CBD oil and decreased one of his pharmaceutical medicines by 2 doses.  Since doing that, he has not had any tonic clonics, is smiling periodically and seems to have a little personality coming out.  All of that sounds like amazing news to me and that we are headed in the right direction!  BUT, he is still having clusters of spasms, in very high numbers and they seem to be a bit more severe than before, which makes me think Infantile Spasms, vs. just myoclonic jerks.  (The cluster he just had today was his highest. 201 jerks/spasms/seizures, in just 1 cluster). We chose Depakote as the medicine to put him on months ago because he was having spasms, and all other medicines had not worked. This was the next best one.  His eyes continue to dart back and forth, very quickly, but less frequently than before.  I thought these were seizures before but now am wondering if it's Nystagmus. How do I know? Are the spasms getting worse because we are weaning? Is the smiling and personality getting better because we are weaning? Are the Tonic Clonics gone because we are weaning or because the oil is working? Am I making the wrong decision in weaning his medicines? Or is all of this just a coincidence? These are the questions that run thru my head every second of every day.  I'm not writing this blog because I'm expecting people to comment with "you are doing a great job", "you are a great mom". I appreciate ALL of those comments, but the truth of the matter is that I'm doing the best I can. so If you are wondering if the oil is working, the answer is, I have no idea. Brian and I will make the best decisions we know how to make for Tanner today, and we may change our minds for tomorrow. 
As we enter into 2016, we all have goals and hopes and dreams that we want and wish to accomplish right? I hope I surpass my budget at work so I can keep my job. I hope and will continue to try and lose weight.  I will always hope and pray and strive to find a cure for CDKL5.  But right now, day to day, thinking realistically, all I pray for is that Tanner is able to smile more, smile bigger, smile longer. That he continues to be able to show us more and more of his personality, but most of all, that he is able to live day to day with NO or very FEW seizures.  I will leave you with a VERY positive note: Tanner had some amazing therapy sessions this week and for the first time ever, he was able to almost completely support himself in a crawling position. I still can't tell you if any of the decisions we are making are impacting his abilities, but he IS getting stronger and I am certain he is a happy and VERY loved boy. HOPE.LOVE.CURE. Happy New Year to All!

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.