I thought long and hard about whether I wanted to post anything about this, but I decided that #1, I have to vent and get it off my chest so it stops bothering me, and #2, the whole point of why we do what we do is to educate and raise awareness of not only CDKL5 but special needs in general. So here goes...
I know how hard it can be to know what to say to us about Tanner. I can understand that and sympathize. We often get "how is Tanner doing?" To which we usually reply with "he's fine". I will usually go a little deeper with certain people because even thought they may not know how to ask, they want to know if his seizures are the same, better or worse. Has he been "well" lately. Is he still enjoying school. So i'll give some details, even though it wasn't asked. knowing what to ask can be a challenge and I get that completely!! The topic of using or not using the word "retarded" has come up lately too and Brian and I have somewhat different thoughts on it as do some other special needs parents. But words can affect people in very different ways depending on the context in which they were used. I wish that word were erased from the dictionary completely, but it isn't. When we were growing up, it was ok to use that word in a statement such as "How can the Cheesecake Factory run out of plain cheesecake? That's retarded." FACT: those words came out of my mouth recently. I am not in favor of the word but when you grow up using it, sometimes it comes out of your mouth and you don't even realize it. I'm not going to cry myself to sleep because I used a word I shouldn't have. The fact remains that I was also raised to be kind and loving of ALL people and ALL ages. I would NEVER use that word in a derogatory way towards a person. Does that make what I said right or wrong....that's an individual opinion. I've had lots of things said to me while in the presence of Tanner that I found inappropriate and we've been stared at a lot because we have a "bid kid" in a stroller, but I can overlook all of that. Again, we are not here to get mad or start fights or cause scenes. We are here to educate and raise awareness. So I printed out informational business cards for Tanner that explain who he is and what his disorder is and we politely hand those out in certain instances. Last week something was said to me that I just can't get over though...

While at my companies National Sales Meeting, I ran into someone who I used to work with but she was transferred to a different part of our company a couple years ago. She knows all about Tanner, is not a mean spirited person and I'm sure meant no harm to this, but when asking about Tanner, she said to me "Is he still with you"?

I've been asked what the life expectancy is for kids with CDKL5 and personally, although that's a hard question to answer, it's still educating people about CDKL5, so I don't mind answering it. but THAT question was out of line. I was in such shock that I simply said yes and looked away and when she left, I continued to cry all night long. (until waking up the next day in the anger phase, wanting to punch her lights out).
I want to raise awareness. I want to educate on Tanner and CDKL5. I want to answer your questions. I know it's hard to always know what to say and 99% of the time we can let some dumb shit go. I've said some dumb shit myself and meant NO harm by it. BUT please....just think before you speak. Asking me if my child is basically alive or dead is NOT OK!

I wanted to share an update on how Tanner is doing these days and our intentions for the elevator we so need.  In an effort to gain better seizure control and after trying over 17 different pharmaceuticals, 2 steroids and 8 CBD oils, we decided to start weaning Tanner off all medications.  To our surprise, in doing this, his seizures started to decline for the first time i can remember in his life!  He was and is still having daily seizures, but they had improved.  We were then contacted by a former Neurologist of his and asked if Tanner would be in a trial for a new anti-seizure medication.  Most of you are reading this saying, of course they said no, they decided to wean.  That's true, but we have also always said we will never live in regret.  What if this new medication works and we didn't try it for Tanner when we had the chance.  This is not a placebo trial, so he is guaranteed the actual medication.  So we said yes and therefor had to put a pause on the wean. After only 5 days, Tanners seizures seemed to have worsened so we pulled him from the trial and stopped the medication.  Since then, his seizures have not gone back to the improvement we originally saw.  The neurologist and the bio-chemical company doing the trial contacted us and asked if we'd go back on, on any terms we wanted.  There is a possibility his increase of seizures was a coincidence and unrelated to the new medication.  The tests they've done show a minimum of 2 weeks before the medicine gets into your blood stream, so if they are correct, we acted prematurely.  But who knows!!  Figuring out what's right or wrong is very difficult when all we want to do is help our son. This trial drug was announced to us at the CDKL5 conference and we had been looking forward to trying it actually, so in the next few weeks, we will be going back on.

Tanner got some new wheels!  He had outgrown his old wheelchair quite awhile ago, before insurance would approve a new one, but now he's got it and it looks much more comfortable!  We are seeking an organization that will take wheelchair donations so we can donate his old one.





The elevator...
In the 2018 calendar year, we raised $25,000 to go towards an in-home elevator that we need so much!  I had a quote from an elevator company and a contractor and the rough drawings (A $50,000 total investment).  Our plan was to hopefully raise enough money for the elevator, be approved for a wheelchair accessible bathroom from Sunshine on a Ranney Day and have another 2-3 years (hopefully) until we will need to sell our van and buy a wheelchair accessible one.  When I got up the nerve to write into Make a Wish, our hope was to put a pool in the backyard since Tanner loves the water so much, with some assistance from them.  Our plan hasn't exactly gone as planned though.  We were denied, for the 2nd time from Sunshine on a Ranney Day and have now reached our limit of applying.  Wow!!  We know many people who have received approvals and home makeovers who are not nearly as severe  as Tanner, who needs to much.  It's a shame to think that "politics and popularity" can play a part in what should be such great, kind and giving companies.  So we went back to the drawing board.  Just to give a little more background, Tanner is almost 5 years old and 60 pounds.  Carrying him in and out of a bathtub is getting very difficult and very painful and will not be possible for much longer.  Similar to carrying him up and down stairs.  His therapy room is in our basement, which he needs for his weekly appointments and just to have a room to go to and play!  The main level is obviously where he spends a lot of time with us as a family and we prepare his feeding tube to eat.  We do have a bedroom on this level, but he seizes all thru the night and it is unsafe for us to be sleeping on a separate floor.  His bedroom is on the 3rd floor.  We recently bought a portable ramp just to get his wheelchair in and out of the car because it is now too heavy to lift on our own.  This ramp can also help with wheeling Tanner in and out of our house.

Our plan now is to apply to Make a Wish for a wheelchair accessible bathroom.  CDKL5 kids do typically get approved (not that that makes me happy), so maybe we can get some assistance there.  We found another elevator company and contractor who can save us about $9k by going with an elevator lift vs. a full shaft elevator.  That would definitely help us out if that's an option that will work for Tanner.  In the meantime, I am reading up on a company called Ride To Give.  They are another 501c3 company that can fund-raise for you (i think) and help raise additional funds for medically fragile people who need assistance.  If approved, any money raised would also go towards the elevator.  If our new plan works out, we should be all set to finally make our home accessible for our baby boy, putting the pool and van on hold for now.  Just please know that it is because of all of YOU, our friends and family, that we were able to raise the $25k we have and we WILL use every penny of that money for an elevator.  Just because it hasn't happened yet, doesn't mean it won't.  The costs that go into having a severely disabled child are extreme, but we are trying to plan as best as we can to bring everything to fruition. And we will get it done!

Happy Hanukkah, Merry Christmas and Happy New Year!

I watched a movie one day called Miracles from Heaven.  If you’ve never seen it before, it’s a true story about a little girl who was born with an incurable, rare disorder that is very painful and if not cured, would have killed her.  She fell out of a tree one day, and from that day on has been cured.  True Story!  When I saw the previews for this of course I said it was a movie I wanted to see, so I saw it, I cried and I felt uplifted.  For no reason other than this little girl was cured.  My Tanner isn’t but it’s still a feel good movie and maybe a miracle could happen for him one day.  Then I watched it a second time, not that long ago and something in it stuck with me that I didn’t think about the first time I saw it.  Towards the end of the movie, Jennifer Garner, who plays the girls mom was speaking at their church about miracles but she wasn’t referring to her daughter being cured as one of them.  she was talking about all the other little miracles that led up to her being in that tree to fall out in the first place.  the way they, by chance, met a waitress who ended up being like an aunt to the little girl, bringing her happiness and hope so she wanted to go back to NY for treatments just to see her.  The kind gestures from strangers.  The huge, rotted, old tree in their yard that their children always loved to climb that would ultimately create the fall.  She mentioned a lot more but it got me thinking.  Why does a miracle have to only mean a cure for Tanner?  It doesn’t.  the change of this thought process has provided me the ability to become more at peace with Tanners diagnosis and life.  Our nanny Debora (who just left us) was our miracle. Brian and I work fulltime and that would not be possible if it weren’t for finding people to care for Tanner on an everyday basis.  Tanner is happy and safe and she is a miracle for our family.  The fact that we got approved for a secondary insurance (Medicaid) is a miracle.  If we get approved each year, it will continue to be a miracle.  A lot of people in other states don’t get approved and can’t afford wheelchairs and standers and hospital visits.  Tanner is taken care of by teams of therapists and medical professionals and a lot of that is totally covered.  that is a miracle!  The fact that god gave Tanner to us instead of parents who couldn’t care for him is a miracle!  The fact that we have such a cohesive blended family, which only increases the amount of people to love and care for Tanner is a miracle!  You hear horror stories all the time about Teachers and care takers mis-treating special needs kids but Tanner was given an amazing school to attend with the kindest and sweetest teacher I’ve ever met, who just loves Tanner.  Miracle!  My middle name is Hope.  Coincidence?  I don’t believe it is.  Everyone knows what an outstanding human being Carson is, but the fact that he is who he is, for our family, is a miracle.  The fact that Brox is here at all, is a miracle and you can read my past blogs to understand why that is.  Tanner may or may not live longer than us but if he does, he has 2 brothers to help take care of him now and that is a miracle.   Miracles are all around us and I am noticing them more and more.  they are all playing a part into Tanner’s life and I believe, leading us down the path that was meant for him. 
My approach and outlook for Toasting Tanner is a little different this year then in the past and I want to explain why because Nothing has changed for Tanner.  He still can’t hold his head up or sit up or walk.  He can’t talk.  He can’t really see or use his hands.  He still eats thru a feeding tube, aspirates and he still has multiple seizures every single day.  He recently had such a bad seizure that he threw up and aspirated some of that, causing him to choke.  We had to break out the suction machine to help clear a pathway for air in his mouth and throat and after that, he quickly developed a fever and low levels of oxygen, requiring us to rush to the ER where he was admitted and diagnosed with pneumonia.  All of that happened in just a few hours, with Carson scared to death watching, Brox pushed to the wayside because his brother required more attention and all while knowing this could easily happen again and again, with an outcome not as good we experienced.  With all that said, I am still, more now then ever, optimistic about the potential future for Tanner.
We went to the CDKL5 conference this year and learned about multiple new trials and medications coming up in the next 2 years for our kids and a potential cure by 2025! How?  A few things are being  researched, such as CBD oil.  The very first CBD oil was just recently approved by the FDA and is curing and improving seizures for people.  Just 2 years ago we were fighting with neurologists across the U.S. to even consider this and families were moving states to buy this legally and now, insurance is paying for it!  We were lucky enough to trial this for Tanner early on and it didn’t work for him but it’s working for some CDKL5 kids! The most exciting information we received though is about gene therapy which has already begun with RETT syndrome and is also being tested on embryos in China.  (yes, very controversial, but becoming more accepted). RETT is what we call the sister disorder to CDKL5.  RETT kids appear to be healthy and typical at birth.  They learn to talk and walk and do everything.  And then all of a sudden it all ends and they regress back to an infant, where tanner is.  RETT is caused by a defective MECP2 gene so by activating the silent MECP2, gene therapy and protein replacement can actually cure the kids.  This has been proven and is happening!  Other approaches may still improve symptoms and act as great treatments.  CDKL5 is an X-linked disorder.  Girls have 2 X chromosomes and boys have an X and a Y.  One idea being tested is if you are able to turn off the defective X in girls, they can function using their other X.  They believe this could ultimately result in a cure!  We think boys will be able to benefit from this type of therapy, but it cannot be a cure, since their affected X is the only one they have. 
The other type of gene therapy being researched is called CRISPR.  There’s a BIG buzz on this type of gene therapy right now.  Chinese researchers were the first to CRISPR monkeys and non-viable embryos and to stick CRISPR’D cells into a real live human!  And now, a team of scientists have used this technique to repair a disease-causing mutation in viable human embryos. Just imagine being able to take your own embryo, during an IVF procedure and altering the cells to take a life altering disease out, before it’s implanted!  But what does this mean for Tanner?  It means we are on our way to doing actual gene editing!  To swapping out a single DNA nucleotide for another.  So far, the studies show the correction of mutations that cause some rare diseases. This entire field of base editing is only about 2 years old, but the company is focused on using base editing to treat serious diseases in children and adults only, not on embryo editing, so could this mean a cure for Tanner?  We hope so. 
But when I say “cure”, what does that even mean?  To be honest, this word has brought much hope to some CDKL5 families and it has caused much heartache to some as well.  a lot of parents, like us, will never give up hope for our children but in order to be able to live life, we have to remain realistic too.  We spent the entire 1st year of Tanner’s life questioning everything.  Why us?  why him?  what does this mean for his future?  What does this mean for ours?  Will he die and when?  Will he ever walk?  Will he ever stop seizing?  Now, we have come to terms with CDKL5 for Tanner and somewhat accepted that this is just his life so let’s make the best of it because all we have is hear and now.  tomorrow is never guaranteed.  We approach any new trial or medication or therapy as “realistically optimistic”.  But just like for some other parents, it has taken quite some time to reach this point and having too much hope just ends in disappointment.  So the word “cure” may mean something different to us than it does to some.  Tanner may never speak, but maybe a cure could mean some sort of motor activity with his eyes or hands!  maybe gaining muscle could become a little easier for him over time and he could learn to at least sit unassisted.  Maybe his seizures will actually go away and his brain could start to function and learn!  Do I realistically believe he will become typical like you and i?  no.  I don’t.  but that’s ok and if only 1 thing improves, I view that as a partial cure and a miracle!  So now, reality and hope have started to blend.  Why do any of you care about this?  because you are our friends and you care for us.  CDKL5 kids are dying.  Period.  Our job is to keep Tanner as happy and as healthy as we can until that cure or potential cure becomes Tanner’s reality.  The realist in my head still has visions of Tanner’s funeral because whether we want to admit it or not, that is a possibility and I have to be strong enough to live thru that for the rest of my family, if, god forbid, that happens.  But the hope in my heart says we are on our way to a cure and miracles are happening.  So until a cure comes, we have to figure out how we can continue to best care for Tanner.  He is getting too big to carry up and down the stairs, He seizes all night long, so I can’t move his bedroom and then sleep on a separate floor as him and chair rails are made for the elderly.  Not for kids who have zero head control and need a harness and the chair to be reclined.  I’ve researched and had multiple companies come to the house.  An elevator is the only thing we can think of other than moving, that could help us.  But unfortunately, we also need a wheelchair accessible bathroom, a ramp to get into our house and a wheelchair accessible vehicle.  Tanner is 4 years old, he weighs 60lbs and is almost 4 feet tall.  Those 4 Maintenance items to care for Tanner will cost about $150,000 total.  That’s why we are here tonight.  We have raised a lot of money for the IFCR in the past and will continue to do so in the future, but for now, we need to think of ourselves and Tanner.  Thank you all for coming, thank you for your tremendous support and love and for helping us spread awareness about Tanner.  It’s working!  Companies are getting involved in the rare community because we are speaking up.  So please continue to do so!  Let’s all raise our glasses and Toast Tanner.  Tanner, may your future here on earth be long and filled with happiness and may you get stronger and healthier with every single rise of the sun. And may a CURE be in your very near future!

3 weeks from today (or sooner) our family will finally be complete and our newest son will be born (via scheduled C-section).  Throughout this pregnancy so many people have asked me if I'm ready and if I'm excited.  Those 2 specific questions.  So as to not go into the details of my true feelings, most of the time I just say yes to both, but that is not totally the truth and I think only another special needs mom/parent can truly relate and understand.
When I was pregnant with Tanner I was not nervous at all.  I've known all my life I wanted to be a mom and I had confidence that I'd figure out how to be a good one. But in my head, the ONLY scenario I had considered was how to be a mom to a typical and healthy child.  Brian and I got pregnant almost immediately, but I miscarried.  Once we started trying again, it took a little longer, but got pregnant fairly easily again, after 4-5 months.  It wasn't until Tanner was a newborn and I was walking with friends in the neighborhood that I asked "if we want another child, how will I ever love them as much as I love Tanner?"  I struggled with that the second I started considering another child, and Tanner's disorder was completely unknown. They responded how almost anyone would, with "you just will".
Brian and I try to have as "normal" of a life as we can and also be parents to a special needs son, along with a typical/ older son.  We know that if we are not happy and active and social and working, we will not be as good of parents as we need to be.  But that is much harder to do than you think. I hate to say that my life revolves around Tanner because again, I try to live a normal life, but at the end of the day, my life revolves around Tanner...and it always will.  He requires more than most.  More attention, more dedication, and yes...more love.  Love is all he knows and can feel from us.
Enter a new child....We had a difficult time getting pregnant this time around.  we tried everything for about a year and a half, with a specialist.  We were tested for everything and there were no signs that we couldn't get pregnant, yet we couldn't. Due to my age, we decided to do IVF.  I have referred to this baby, Broxton, as our miracle and here's why (I'll try to summarize). The doctor was able to extrapolate 19 eggs from me, which I was told was extremely positive!  the eggs then have to go thru many different stages to determine if they will survive, then to be fertilized, then to grow/survive again.  they expect about half to drop off.  At the end of this process, we had 3 that were fertilized, but only 2 looked as if they'd make it, and even those 2 weren't "graded" well.  This was a long and very expensive process that we only had 1 shot at.  I received this call on CDKL5 awareness day 2017, as our entire cul-de-sac was filled with people waiting to begin our balloon liftoff.  I cried behind a golf cart and then had to suck it up and move forward.  We decided to do genetic testing for obvious reasons.  Only 2 of the 3 survived the next 2 days and were then sent for genetic testing.  Only 1 of those 2 came back genetically healthy.  We started with 19 and ended up with 1 and all we could do was pray that it turned into a pregnancy once it was inserted.  Obviously it did...and now we have our miracle baby.  Excitement!!  But now comes Scared.  I had no idea how to be a special needs mom but as each day goes on, I try to do my best.  I think I've been doing ok considering, but I'm about to give birth to a, please god, healthy child.  what will I feed them? Tanner has never been able to chew and now has a feeding tube.  Do they just learn to sit and pull up and stand and walk all on their own?  Tanner could never do any of that. How important is it to baby proof my house and move all the breakables and chemicals?  Tanner never bothered with any of that. Will he actually talk and say momma? will he learn how to repeat me if I say a curse word? (haha).  Tanner never did (and Carson was too smart to).  Will I have to teach Broxton how to swim rather than just holding him myself? Will I actually wake him up to go to school in the morning vs. letting him wake up all on his own since Tanner only sleeps in due to his body seizing so much and being over exhausted and needing his sleep?  Will he make friends that actually ask to play with him?  This may seem trivial to most of you but I'm about to be a first time mom...yet I gave birth to a now 4 year old. When Tanner seizes and starts to fall asleep, we tiptoe and whisper.  Will that still be possible?  I'm sure not, but how will I handle that?  I have no idea what we are about to get into but I am scared to death at whether I will be able to be a good mom to a "typical" child.  I think a little part of you always loves your first born just a little more than the others, and I think that's normal.  Or maybe Tanner is just so extremely special I can't help it.  I want to bond with Broxton and be a good mom and I have no doubt I will love him.  But I still think Tanner will always come first. I just hope that doesn't make me a bad mom and Broxton grows up to understand and can love and play with Tanner like we all do.  I hope god gives me enough strength to be a good mom to all my boys.

​When Tanner was only 14 months old, after multiple medicines unable to control his seizures, we decided to start him on the ketogenic diet. The Keto diet is a high fat, low sugar diet that has been proven to help control seizures in some people. It changes the source of energy for your body, so instead of your body getting energy off of carbs, it now runs off of fat. It is very strict because based on the bodies natural ability to make Ketones, every single morsel of food that goes into your body needs to be measured out. your body can absorb sugar from almost anything, so we had to change lotions, chap sticks, sunscreen, soap, etc... Not just food. At that time, Tanner was eating solely by mouth, so all his meals were specific recipes given to us by a team of doctors and nutritionists, which we had to measure out each day, for every meal. Luckily, Tanner naturally produces ketones easily, so getting him into ketosis was fairly easy. Tanner stayed on this diet for over a year, but it did not help control his seizures. We gave it our best shot at that time.

Last week we checked in Egleston Hospital to start Tanner on the Keto diet again, at almost 4 years old. Tanner has been seizing, with no break, for almost his entire life, after trying MANY medications, oils, steroids, etc.. After discussing this option again with his primary neurologist and his Ketogenic Neurologist, we were told that the diet is often more successful in kids who are a bit older. At 14 months old, Tanner was going thru tremendous growth spurts and monitoring how many calories of fat vs. protein vs. carbs was very difficult. He is also now solely tube fed, making it easier for Tanner to consume all daily calories, which is again necessary to maintain ketosis. We were given a potential 15% chance of success this time around. 15% may not sound like a lot to you, it doesn't really to me either, but if there's even a 1% chance of helping Tanner find some relief, we must try it.

Before checking into the hospital, I scheduled another swallow study. Tanner has had 2 prior and both times it showed aspiration. After the first test, we started buying a thickener to add to all his liquids, which at the time was the only thing he was aspirating. He was still eating purees by mouth. After the second test, we made the decision to put him on a feeding tube because it showed he was still aspirating liquids, which he was refusing to even eat anymore (bottles of formula), but it also showed aspiration of applesauce (purees). He had a delayed swallow, so the food would just sit in the back of his throat until he finally decided to swallow it and by that time, parts of it were being aspirated. He was getting very skinny and we simply didn't have a choice. Since then, Tanner has been completely tube fed, but we still make a couple thicker purees for him as a snack, just to give him the practice of using his jaw and tongue and swallow techniques. We would only give a few bites a day but his swallow seemed to improve because he loved eating so much, he gobbled it down! I was pretty sure he was still aspirating, but before moving to a diet that would limit us from feeding him by mouth even more, I wanted it confirmed. The swallow study test showed that he was now also aspirating the even the thicker purees we were making him. he no longer showed a delayed swallow. He enjoyed eating so much that he swallowed it right away, but parts of it were still being aspirated. The worst part about it is that he showed NO signs of it bothering him. No coughing, uncomfortable face, nothing. So unless we did the test, we'd have no idea he was aspirating anything. This is dangerous. It was now confirmed and although it was news I expected, it's never easy to hear. Tanner has always loved eating, so I am now faced with the impossible determination between quality of life and safety. To some of you this may not seem like a hard choice. You choose health and safety right? But for us, with a disabled child who shows signs of happiness for VERY FEW things, and so far has been pretty healthy in terms of viruses, sicknesses and pneumonia, you want to make sure he has all the things in his life he loves, as often as possible. And here we are, taking that away from him.

The day we checked out of the hospital we were given instructions on how to make his new formula while on the diet and all our choices and options for other products. My 1 main question was what we were to do when Tanner throws up, which has become a daily occurrence for him during rough seizures. We were told that it is that much more important to try and get Tanner's seizures under control now then ever because since he is aspirating so often, there's a good chance he is aspirating a little bit, every time he throws up, and while on a higher fat diet, those foods getting into your lungs could have a worse effect. This was not information I was aware of or prepared to hear because like almost everything else, I have no control over it. So...I cried for a little and then came to the same realization our family has had to come to since he was born...it is what it is. Life goes on and all we can do is to continue our fight.

Tanner is still in a very sleepy state from the diet and had very little changes to his seizures as it is too soon to tell anything. Please keep him in your prayers as I know you all do and let's hope for some relief for a little boy who really needs and deserves it!

On Feb. 1, 2014 Tanner Ashton Froy was born.  After having 1 miscarriage but a very easy and normal, full-term pregnancy, our baby boy was finally in our family.  From the second he came out, he cried…a lot.  But it wasn’t a colicky kind of cry and he did take brakes.  He ate a ton and was growing normally.  As a new mom, I kept making excuses saying he was just a baby and the crying was normal.  Brian, having been a dad before, kept saying “something is wrong with this kid”.
At 3 months old, tanner was not making eye contact or smiling often but the doctors kept saying not to worry because he just might be a little delayed but it’ll happen.  It’s common.  Mother’s day week/weekend, we took him to Destin.  I had seen what I thought were seizures a couple times but no one really believed me.  After Brian saw for himself what I was talking about, we came back, went to the doctor first thing Monday morning and were then told to go straight to the hospital.  We spent a week in the hospital where he had multiple confirmed seizures and was diagnosed with epilepsy.  We have seen Tanner seize thousands of times at this point, but during that week, watching our 3 month old newborn baby seize was not something than can be compared to anything.  It was the worst time in our lives…so far.  Tanner was put on an anti-seizure medicine and for the next 3 months, he went seizure free!
All we heard during these 3 months is how he would grow out of this.  He’d be fine.  Epilepsy was so common! So For the first time, hope set in and we chose to believe everyone else.  Even though Tanner was still not meeting ANY milestones.  The day of the magnolia walk in august of 2014, at 6 months old, Tanner had his first seizure, again.  That was almost exactly 3 years ago and Tanner has been seizing every single day since. 
October 31st of 2014 was Tanner’s first Halloween!  He was still in daycare at this point and I was so excited to go to school with his costume so he could be strolled around in their parade.  What a fun day with friends! When we brought him home, we did another parade in our neighborhood and because it was so cold that year we quickly brought him back home as Brian and I took turns feeding him and getting him to fall asleep while socializing in our cul-de-sac with neighbors and kids.  We had tents, drinks, chili, candy and tons of people.  I ran in to check on Tanner who was with Brian and he felt very hot to me.  Remember, just a few hours earlier, he was perfectly fine!  I knew that fevers could bring on seizures so I didn’t hesitate.  I went to get Tylenol to give him but before I could measure it out, he started to have his first tonic clonic or grand mal seizure.  Now he can’t swallow anything.  I had NO rescue medicine at home because the doctor refused to give it to me since Tanner was so young. I don’t remember how long I waited in hopes that it would end, but it never did, so I called 911.  I notified people outside that an ambulance was coming and then I wish I could say that everything got blurry and I don’t remember, but I remember every detail.  Tanner seized for 45 minutes straight.  Picture an almost 9 month old baby, shaking uncontrollably.  Brian held him the whole time until it was time to put him in his car seat and be transported onto a stretcher and into the ambulance.  For the first time, the thought crossed our mind that our son may not make it.  This was the worst time of our lives…so far.  As our neighbors, who are almost all her tonight, prayed with us and for us, we went to the hospital.  Tanner had been seizing for so long that when we got there, they couldn’t find a single vein to get an IV in.  So they drilled, yes drilled a central line into his shin bone…as I watched.  Tanner had caught a virus, similar to ones you and I catch often, but for tanner, this was the result. 
6 days later, Tanner was diagnosed with CDKL5.  This was the new worst day of our lives.  Our son would never just grow out of his seizures.  We “choose” to remain hopeful and positive, but more thank likely, tanner will never walk, never even sit up unassisted, never have use of his hands, never be able to see clearly, never talk.  I’ll never hear what my son’s voice sounds like as he says mommy or daddy or I love you.  How annoyed do you get when your kid wants your attention and says mommy, mommy , mommy.  Now imagine you could never hear it again.
2 weeks later, we had our first fundraiser at a boutique in the city; we designed, made a sold special “Tanner bracelets” and raffled off a ton of fun stuff.  With lots of help, in a very short amount of time, we raised just over $12,000!  This was our therapy.  This was our way of not feeling helpless in a very helpless situation.  
In the past 3 years, Tanner has tried 14 different pharmaceutical anti-seizure medicines, a very strict diet of no sugar or carbs called the ketogenic diet, 7 different CBD oils, including straight THC, 2 steroids, a complete holistic supplement path, a VNS implanted into his chest and a feeding tube placed into his stomach.  Nothing has helped him.  We have witnessed at least 8 different types of seizures and currently he is having clusters of multiple seizures, all at once.  I now know that they are called hyper motor tonic spasm episodes and they are very common in our kids.   You would think that after witnessing your child seize every single day for the past 3 years, you’d get used to it and it would get easier.  But if you listened to this every day, could you ever get used to it?
https://youtu.be/TFHpbh1t4rA
When I was a little girl and then a teenager, I had visions of my wedding, like a lot of girls do I’m sure. As you get older, some of you may have visions of watching your little girls walk down the isle. You imagine your little boys in a cap and gown, graduating college one day.  When I was pregnant I dreamed of Tanner’s Bar Mitzvah day.  Shortly after Tanner was born though, all those dreams disappeared.  Now…now I wonder and actually dream of a potential funeral one day.  I know that sounds so harsh to hear and believe me, it was really hard to write.  2 CDKL5 boys have passed away just in the last 30 days.  Boys! There are less than 100 CDKL5 boys in the whole world yet 2 in the last month are gone.  As parents of a severely disabled child, Brian and I have had to sit down and discuss what would really be better.  Selfishly thinking, we of course want to go first just like all parents should.  Why would we want to bury my child?  And we don’t.  But what’s the alternative?  Who is actually capable of taking care of Tanner besides us?  If we went first, who would devote their lives to his therapy, his medicines, researching new surgeries and new trials and new medicines.  Who will put him to bed?  Who can carry him around the house?  Who will fight for him when his doctors say there’s nothing more we can do.  Who will wake up with him all night long and comfort him as he seizes?  And who really “should” have to take on that responsibility BUT his parents?  So the reality is all our thoughts and dreams and ideas of who Tanner would be need to be tucked away because that is just not his path.  That was OUR path.  Those were OUR dreams.  So for as long as Tanner is with us, we will try to give him the best quality of life we can.  We will buy him Ferrari’s so he can stroll around the neighborhood like the other typical kids.  We will take him to the pool and let him swim because he loves it so much.  We will fight to win grants to get him the equipment and toys that he could benefit from.  We will take him to the park and to his big brothers baseball and basketball games.  We will love him, unconditionally, with our whole hearts, forever. 
Hope is such a hard thing to have, yet it’s something that is almost too natural for parents to not have.   After 3 years of trying almost everything, how could we still have hope for Tanner to be seizure free?  We don’t.  But we’ve learned that hope isn’t always all or nothing.  We do have hope that although he may never be seizure free, we think better seizure control is possible.  We think a better quality of life is possible.  Tanner doesn’t appear to have an ounce of muscle on him so how could we still have hope that he could sit on his own or walk one day?   Because we are his parents.  But I am also realist.  And realistically thinking, without a cure, he probably won’t walk or talk, ever.  But thanks to YOUR donations, we get closer and closer to finding a cure and a better quality of life each day!  The foundation has been working with a few Pharmaceutical companies to evaluate some potential new therapies in CDKL5.  As you all know, one of the big problems of CDKL5 is seizures.  Just a few weeks ago, the first finding had been made to identify one of the potential causes of the seizures.  The foundation is already using this information to design a trial with a unique drug that could effect that pathway, and we hope bring us our first truly effective therapy to help decrease seizures.
After 1 small fundraiser and 3 Toasting Tanner’s, if we reach our goal this year, we will have raised almost $85,000!!!  From the bottom of our hearts, thank you all.  Thank you for being here.  Thank you for including us and tanner in your lives and the lives of your children. Thank you to Brian’s sister Tiffany for flying in from Chicago to be here tonight.   Thank you to our friends Miriam and Bryan, CDKL5 parents to sweet Landon, for coming every year and supporting us and to Landon’s aunt and uncle who are joining us tonight! Thank you to our parents who have never said no…to anything! They are such an amazing support team to us and we are so blessed to have all of you! Thank you to Carson for sitting around with us on weekends when we can’t do anything because tanner is having a hard day…and not complaining. He happily just “gets it”.  And thank you to Carson’s mom, Heather, who doesn’t see Brian as her ex or me as the stepmom.  All she sees is that Tanner is Carson’s brother and for that reason alone, she loves him and supports us.
Lastly, let’s all raise our glasses and Toast Tanner.  We are here to help all children living with CDKL5, but we do it in the name of our special, little boy.  Tanner, may your future here on earth be long and filled with happiness and may you get stronger and healthier with every single rise of the sun.

Each year, just after Tanner's birthday in February, I make a list of new tests I think we should consider getting since he's getting older.  And new therapies I think he'd benefit from.  This year, I decided on the following: look into hypotherapy (therapy on horses), aqua therapy (already begun),  repeat swallow study and an upper endoscopy.  The reason for these 2 tests is because around Jan or Feb of this year, Tanner started giving us a problem with eating and unfortunately, his seizures have not let up at all, which always makes everything worse.  Tanner has always been a great eater!  He gets 3 meals a day (puree's) and 2 formula bottles, plus water thru a bottle.  we are to the point now that some days he refuses to take a bottle at all, no matter what's in it.  Only on occasion will he take it.  This is a problem for a lot of reasons.  He needs to stay nourished properly, he needs to stay hydrated and it is my assumption that the seizures have caused him to begin to "forget" how to suck.   We give Tanner medicine for reflux but an upper endoscopy will tell us just how bad his reflux really is and if we are giving him the right amount of medication.  It will test for EOE, which is a chronic condition that affects the esophagus and can mimic GERD (gastroesophageal reflux disorder).  Basically, it could be causing him a lot of pain and is maybe the reason he's not eating so well.  It is actually very easily fixable.  He will need to be put under anesthesia for this test and currently is scheduled for June 14th, but that could get changed due to the main issue and reason behind this blog.

We had a follow up swallow study done and the results were not good. We knew he was aspirating with liquids and for almost a year now we've been having to thicken any liquid we give him.  Most of you reading this who know me, know I have always been hopeful when it comes to Tanner and generally speaking, I'm a positive thinking person about everything. Going into the test, I knew things had not improved and just wanted to confirm that, but in the back of my mind I thought maybe he HAD improved.  Why would I possibly think this???  Because I'm his mom and as realistic as I am trying to be, I can't get rid of hope, even though sometimes it may seem easier.  What did not cross my mind was that things were worse, yet they are.  Not only is Tanner still aspirating liquids, he is now aspirating puree's. Eating is one of the things Tanner always did well.  It brought him joy as he loved food, which in turn brought us joy.  But it is now harming him and I must take it away.  This was devastating and still very hard to comprehend.  When tanner started refusing bottles I started looking into feeding tubes and talking to doctors and some parents.  Our speech therapist found a special Sippy cup that poured the liquids out faster than squeezing from a bottle but slower than a regular cup.  we were able to give Tanner his bottles thru this, but this was only a temporary fix.  As a mother, I just want my child to be fed, to be happy, to be nourished and as healthy as he can be.  So we were "considering" a feeding tube if we had to, but we weren't there yet.  Then came the results of the swallow study. The nurse who conducted the study said Tanner's aspiration was "significant".  Every swallow is probably difficult for him and could be another reason he is refusing bottles. Tanner is losing weight and coughing with his medications, which are all liquids, MUST be given and has also gotten difficult to give.  For those of you who don't know, to aspirate means that liquid is getting into his lungs.  When he swallows, some is going down the right way into his stomach, but some is not.  If too much of it gets into his lungs, it could cause him to get very sick.
We've been thru a lot with Tanner, but so far, this is the hardest thing I've had to go thru and a terribly difficult decision.  Some of you may wonder what the decision even is.  This could be a matter of life and death, what decision is there?  and you're right. But again, as a mother, there's that little thing in the back of your mind or maybe it's in the back of your heart, called Hope.  Every day I think, "he took a bottle today, he's getting better", or "if we start this new medication and it works and his seizures get better, he'll start eating better and swallowing better". But the fact remains that my child is aspirating now and we need to help him.  We have been incredibly lucky that Tanner has not been sick AT ALL really, but I don't want to wait until he does and then kick myself saying, "why didn't I get the feeding tube earlier".

We are awaiting scheduling to call us about surgery, to place a G-tube into Tanner's stomach.  It will be in either June or July.  Could be as early as June 8th.  They will do the upper endoscopy at the same time.  We will be in the hospital for anywhere from 2-5 days.  We will still be able to practice feeding with Tanner by mouth, with just very little food and liquids. Only for the purpose of therapy, so he doesn't ever forget how (in case he gets better), and if he does, removing the tube is always an option or simply not using it.  But for now, it will give us peace of mind that he will get ALL of his meds and liquids and nutrients to help him grow and survive.  And our hope is that it will bring him no pain and even maybe relieve some pain he could be having now, that could even be leading to increased seizures. The other parents of CDKL5 kids I've spoken to say the tube was the best decision they ever made, but the hardest.  So far, all I know is this is definitely the hardest.  As I sit here writing this, I am thinking of yet another CKDL5 angel who gained their wings this week, but she fought this battle for 30 years!!!  I only hope and pray that all these decisions we are having to make will increase Tanner's chance of having a long, happy, enjoyable life with us. 

We hope to see you all at this years 3rd Annual Toasting Tanner, our fundraiser to increase awareness and research and funding for ALL kids living with CDKL5 and need our help, just like Tanner does.
https://toastingtanner.everydayhero.com/us/toasting-tanner-2017
FUCDKL5
Hope.Love.Cure

It's been a long time since I've posted an update on Tanner so here's what's happening in a nutshell:
We got on a trial thru Emory for a new medication to try and help control Tanner's seizures. For the first time in tanner's life, we saw positive results from something!  At the beginning, Tanner's seizures had significantly decreased during the daytime.  He was still having a lot of seizures at night though and seizing all night long, waking up a few times at least.  BUT, it was a little progress.  He started to come to life, seeming more aware, active, alert and talkative again.  That only lasted a few weeks and in typical Tanner fashion, all hell broke loose again.  As of today, I'm happy to report that his cluster seizures (spasms/myoclonics) are gone!  so the medicine HAS helped.  but he has started to confuse nighttime and daytime.  he has awful tonic seizures now during the day and passes out, only to wake up around 1-2am and is then awake.  His molars could be coming in and causing additional seizures, but we aren't sure because he can't express when he's in pain to us.  he doesn't cry, he doesn't talk, he can't use his hands to even point to what hurts.  welcome to the world of a special needs family!  We got a new nighttime medicine approved for Tanner that we have been trying to get him on for awhile, so we will start that this Friday, and hope it solves some of this. We had such success when Tanner was on a lower dose of the new medicine, so the next step will be to lower the dose and see if that helps.  Like I said, clusters are gone but come spend a full day in our household and try to imagine 3 years of watching your kid seize almost all day long, with rough, hard to watch tonic and tonic clonic seizures, trying 15-20 different AED's and steroids, 3-4 different CBD and THC oils, a very strict diet, a total holistic approach and a VNS surgery, and STILL having to watch him seize so bad his little body literally just passes out.  You'd feel defeated too.  Seizures are part of his disorder...the worst part.  They will more than likely never go away, but what I wouldn't give to see the day where he is able to live a consistent life of only 1-2 seizures a day at most.  To have any sort of seizure control.  These seizures have left us feeling completely defeated.  Yet we go on.

Terrified...(yet slightly excited).  Tuesday, March 7, Tanner will begin school! He will start off with only going 1 day a week for 3 hours a day and we will work up to 2 and then 3 days a week, but 1 is all momma can currently handle.  The school seems great and the teachers all very nice!   He will be in the severe and profound classroom, so not just special needs pre-k but better, one on one attention.  After multiple meetings, I actually feel more comfortable than I thought I would, but for the past 2 years, Tanner has been home every day.  Brian and I work from home when we are in town so we get to see him all day!  If he has a bad day, we are there to help.  If he has a good day, we are there to witness it.  If WE have a bad day, we get to see his sweet face and kiss him and feel better.  He's now going to be in the custody of (at this point), complete  strangers.  He will not come home each Tuesday and tell me about his day.  He will not tell me how much he loves his school friends and teachers.  He will not tell me if he enjoyed playtime or therapy time.  and most importantly, he will not tell me if he was mistreated. 
When Tanner was first in the hospital at 3 months old, the doctors ran a ton of tests.  blood work, MRI, EEG and spinal tap.  they needed to put him under anesthesia for the MRI but planned on doing the spinal tap the morning following, with NO anesthesia.  can you imagine how painful that would be!  A spinal tap to an infant, with no warning and no anesthesia!  I said, "over my dead body"!  I argued and fought and convinced the 2 departments to work together and schedule both procedures while under anesthesia, one immediately following the other.  I spoke up for my kid and protected him because that's what a mom/parent does.  But how can I protect my child when I don't know if there's anything to protect him from? Tanner still feels.  he still knows when he's loved and when he isn't. He still knows when someone cares about him and when someone is neglecting him.  He still feels pain.  How will I know.  How will I know anything.  Terrified is the only word I can think of, but it doesn't do justice to what I actually feel.  I will shed a LOT of tears on Tuesday, happy for my baby boy to be growing up and experiencing new things.  Happy that he will be in a classroom with peers and make friends.  Happy for him to get to meet new therapists who will help him.  But sad to let go, even if only for 3 hours.  Sad to lose a little bit of control and not know how he spends every second of his day.  So friends and family who are reading this, here's what I need:
prayers that Tanner's seizures begin to improve with these 2 new medicines. Prayers that Tanner gets back to restful and peaceful night sleeps. Prayers that he has a fun and enjoyable first day of school and every day of school following. Prayers that he is treated with love and compassion and patience. and Prayers that momma survives Tuesday! ;)

When Tanner had his 1st birthday, we had been thru such a roller coaster that first year that everything was a blur.  I was so excited to celebrate with him, but when the day came, I was consumed with how will he eat cake, he can't even hold his head up in his high chair and he was still crying all the time. I didn't know how to deal with the situation as it was so new to me. Since then, a lot has changed but a lot has emotionally stayed the same. Brian and I talk often about needing a new chair to feed him in as he gets bigger, turning our van into a wheelchair accessible van, having a ramp to get into our home, putting in some sort of elevator or lift, installing a lift from Tanner's bath into his bedroom, and how we will be able to afford all of this. But out of sight out of mind right? I can still carry Tanner now so let's not think about it yet. He's still in a stroller, so let's not think about it yet. Then his Occupational Therapist tells me to look into an organization that remodels rooms in your home and they are looking for families for 2017, so we should apply. I mentioned that we don't need a lift or anything yet. I'm still holding out hope that Tanner will walk one day.  She looked at me and said, "Courtney, you need to look into it!" It was my first kind of "real" moment that Tanner is not 1 year old anymore.  He's about to be 3, he weighs 38 pounds, he's 3'3" tall and he's nowhere near walking.  This was what I needed to hear, but it was not a fun moment.  I filled out the paperwork and dropped a form off for his doctor to fill out and when I picked it up...another "real" moment.  The form asked for age of child and developmental age of the child.  She wrote "4-6 month old infant" as developmental age. This sent me into instant tears. I describe Tanner to others all the time as an infant in a toddler body, but to have someone else say it and agree with you was heartbreaking and very real. To see the words "infant" written about my boy who's about to be 3 was very hard, but that's reality.  I never realized that when I talk about Tanner, I'm in a state of raising awareness, of teaching others or defending him.  I'm not in a vulnerable state of mind. 
In the efforts of moving forward, we are waiting to hopefully be approved for some sort of home makeover to better suit Tanner's needs and we have scheduled him for VNS surgery, November 8th.  We have tried a ton of medications, including many different CBD oils.  The CBD does amazing things to his personality and happiness, but nothing has touched his seizures.  And they have been really bad and out of control for awhile now.  VNS (Vagus Nerve Stimulation)  is designed to prevent seizures by sending mild pulses of electrical energy to the brain, via the vagus nerve. A device, similar to a pacemaker, is installed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.  Like anything else with CDKL5 kids, this surgery works for some and does not work for others. At this point, we have to keep moving forward and trying everything we can. So as difficult as it was, during Tanners first year of life, for us to mourn the loss of the child we thought we were having, I find that I am still doing that today. Please keep Tanner in your thoughts and prayers as he goes into surgery on the 8th, because above all else, I'll happily keep my "infant" baby boy, in any size and age body, as long as he's here on earth with me.

9 different seizure medicines, a very strict ketogenic diet, 3 CBD oils, a complete holistic supplement path, 2 steroids, 2 spinal taps, 2 MRI’s, 2 sedations, more EEG’s than I can count, probably a million needle pricks and pints of blood.  A diagnosis of epilepsy.  A diagnosis of CDKL5. A diagnosis of Infantile Spasms, and now, potentially, lennox gastaut syndrome.  Both extremely bad and detrimental to the development of a child.  To the development of Tanner.  1 ambulance ride, 2 rescue meds which have now been given multiple times, a central line drilled into the shin bone of a 9 month old.  A swallow study showing aspiration, meaning liquid is being swallowed incorrectly and going into his lungs, which if not corrected, could cause pneumonia, organ failure and worst case scenario, lead to death.  8 different types of seizures, currently still having at least 4 of those today. And a potential surgery called VNS that we are looking into getting in the very near future.
Tanner has been thru more in his lifetime than the majority of us in this room will ever go thru, and he’s only 2 ½ years old.  Do any of you know exactly how many smiles you’ve seen your child give?  I bet not because they come so frequently, thank god.  I bet Brian and I could sit down and count the amount of real smiles we’ve seen from Tanner.  When Tanner smiles, we stop what we are doing and we smile back.  We run into the room and we celebrate that smile!  CDKL5 is terrible, but those smiles, as few and far between as they are, they are what give us hope.
Hope, hope is challenging at times but without it, what is even the reason to live.  So hope we have! Love, Love is very easy for us to give.  It comes naturally and in abundance. Cure, cure is why we are all here tonight.  Do you ever think back to the very first person who was diagnosed with Cancer.  Maybe the very first person had lung cancer.  And the next week someone else was diagnosed with liver cancer. The week after that, brain cancer.  How on earth will they find a cure for Cancer when there’s so many different kinds, that are affecting people so differently? I pray to god that a cure is found one day, but do you know how much money the Cancer society raises today?  They raise more money in 1 day than the IFCR raises in a whole year.  Remember the starfish story I told at the balloon lift off.  That’s not just a story, it’s the truth.  A boy, walking along the beach sees hundreds of starfish that are getting washed up on shore and dying.  The boy starts picking them up and throwing them back into the ocean. A man comes up to him and says, young man, what are you doing? You can’t possibly save them all.  It’s hopeless.  You can’t make a difference.  The boy picks up another starfish and throws it into the ocean and says, “I made a difference to that one”. Our Tanner is that one and he needs your help.
While at the CDKL5 convention, we got more clarity on Tanner’s specific genetic mutation.  We found out, without making this too difficult to understand, that Tanner does not have a deletion of the CDKL5 gene.  IN fact, his gene or protein is all there.  but there’s 1 amino acid, on exon 6 of the entire protein that is replaced with a different amino acid. 1 amino acid change, amongst billions, is causing ALL of this!  we found this fascinating and unbelievable at the same time.  Imagine all 1500 cdkl5 kids having a different genetic report because each person had a different amino acid change or it was occurring on a different exon.  There’s no way to test a medicine or find a cure for everyone if each person is affected so differently.  Or is there?  The work the foundation is doing is truly amazing!  They are on the cutting edge of new medicines and surgeries that could help Tanner!  There’s currently 3 centers of excellence for CDKL5 and Rett, meaning hospitals that focus specifically on CDKL5, where doctors see CDKL5 patients around the world and spend their time focusing their efforts on kids like Tanner.  The foundation is investing time and money into potentially opening up Emory as the 4th center of excellence.  Do you know how amazing that would be for us?  How amazing that would be for Landon’s parents, who are here again this year!  Those are just a couple of examples of where your money is going. 
We wanted you to feel confident that your money is being well spent on things that could potentially save Tanner’s life. 
Harper Howard, Sorrel Jay Bratton, Paige burns, Dani Smith.  Those are names of CDKL5 children who have gained their wings in heaven just this year, that we know of.  We don’t know what tomorrow may hold for Tanner.  I don’t think we were hand picked to be Tanner’s parents, I don’t think we are any more special than any of you and I don’t think we are any stronger than any of you would be if your child were also in pain and needed your help, but I know for certain that we cannot do this alone and thank god we’ve never had to.
Words will never be able to express how much love and appreciation and thanks we truly feel for all of you.  We met other parents at the convention who said how jealous they are at the amount of support we have.  We truly could not survive without the friendships we have made and love we receive from all of you.  I never thought I’d be thankful that Brian and I both have parents who are divorced, but they are all happily re-married, so for our family, that means 4 full sets of grandparents who love the heck out of their grandchildren.  Thank you for supporting us and loving our baby boy so much. I’ve heard from a few people that they can tell how much tanner really reacts to me or to Brian or to Carson.  That you can tell he recognizes us and loves us.  We see that too, but something that brings us so much joy is when we can really see when tanner is happy.  Tanner has 4 different therapists that each work with him on a weekly basis and he loves them all, but his favorite therapist, by far, is here tonight, his speech therapist Jill.  His Occupational therapist was at the balloon lift off and the company they and his physical therapist work for is one of our sponsors, noted in the programs.  I want to specifically thank my cousin Sarah for flying in with her boyfriend Grant from Chicago to be here tonight.  To one of my best friends Miranda for coming in from NY, and my awesome friend Tina, who’s husband Josh is our chef tonight and donated all the food for free, so more of your money could go straight to charity.  Brian and I want to again thank Heather for organizing this event with us and of course to big brother Carson, who on a daily basis, teaches us love, kindness and forgiveness, just by being himself.    
I’ve prepared a little slideshow and when it’s over, please eat!  And don’t forget the items you see out and on tables are part of our auction and we will close them out tonight!  But don’t forget our online auction too, which is still live and doesn’t end til the 31st!  www.biddingforgood.com/toastingtanner