Calm Amongst the Chaos

Andrew and Tanner (my nieces boyfriend) pulled into Ft. Collins last night and stayed at his brothers place. They left Greer at 5:30am and made it to Ft. Collins by 5pm. I have to say that is why I did not want to drive with him, I can imagine they never even stopped to pee. Just went in beer bottles and when pulled over the cop drank it.. ok so never mind the last part ….
The raffle tickets are selling online and I am sure we will sell a bunch in Sturgis! This is really exciting event to take part in. I did want to mention, we are not staying in Sturgis. The kids will probably never even see Sturgis, unless we go during the late morning one day, we will be quite a distance from there. So I know those that know me know I wouldn’t let my kids hang out with saggy milkers (quote I got from a friend that I just loved), body painted naked ladies of the Sturgis Rally, but if you were referred to my site and don’t really know me, rest assured. Although I will do all in my power to go out one night and see all those saggy milkers for myself, rest assure that my kids will be safe and sound with a family member in the house we will be staying at.
The kids and I fly out Sunday at 7am. I didn’t say be at the airport at 7am, I said flying at 7am. I mean, kids up, loaded into the van, unloaded at the airport, wait in line for seats, go thru security and then on the plane at 7am. Wish me much much luck. Thank God I am bringing my niece Ariel and she will fly with me and help out this trip. I would not have been able to do this alone and I really didn’t want to drive with Andrew and the kids. So while it will suck getting there so early, like 5:30am early with 3 kids, it will also be nice to get in at 10:30am and have the whole day there. We plan on staying thru Wednesday, the run is Tuesday, then we will all drive to Ft. Collins and stay 2 days where we finally get to meet our new sweet nephew Mason! He was born in February and we have only seen him thru pictures. We will fly home from there on Friday, thanks Alegiant Air!
The new neuro was nice. He was on time and very thorough, spent an hour with us. Most of her records did not make it to him so we got to go over almost 9 years in that hour. Andi went all ADHD in there and was hard to manage, there was no way I would make Lily’s appointment in Phoenix and get to school in time to pick her up so I had to bring her along. I mentioned how bad the seizures were and he rx Depakote since it helped for awhile the first time we tried it. I have the script sitting on the kitchen counter. Since I got her dose back up to regular on the Clobazam she has been doing much better. He also bumped up her VNS so that might be also what is helping. There were a few things that bothered me and the timing was just all wrong I guess so it bugged me more.
Backing up I was told we could use Make A Wish for Lily. Now I always thought of MAW for kids with cancer who aren’t going to survive. I think it is an amazing organization and just never thought it would be something for Lily. So when I kept seeing CDKL5 families talking about wishes, I inquired. Some used their grant for equipment needs, vacations, etc. I looked into it and most likely CDKL5 is a qualifying disorder. Now as you can imagine that didn’t really thrill me. I mean, it would be nice to have a wish granted, but the meaning behind it means Lily’s life will not be a long one and knowing there are girls in their 20’s with CDKL5, I guess I just trust that will be Lily as well. But then again, we don’t know anyone older since this diagnosis is so new, I just watch these older girls with so much hope and inspiration and want to see them in their 40’s and beyond. That Wednesday morning I got the call back from MAW Phoenix chapter and she was asking me questions and was going to follow up with our Pediatrician to see if she qualifies.
Back to the appointment, the Dr. says at the end, “did your previous Neuro talk to you about sudden unexpected death” and then started talking about how an epileptic has a higher death rate than the average population etc. I said he never said anything to me, but I don’t think he felt like he had to. (in my head I was thinking like you don’t have to) I get it, he was making sure I understood the importance of seizure control. Like that hasn’t been my mission, my passion, my life’s desire for Lily for these past almost 9 years. He recommended going back and completing the corpus callosotomy (brian surgery) and I was very negative towards that option and maybe that was his angle to push the surgery, she could die without, but she could die with it and I think a part of me died that last surgery and I am not ready to let more of her or me go. But I think after he just sat there and listened to me rattle her history like I was a medical professional myself, I am not bragging, I really think I could have my doctorate in neurology if given by life experiences. OK maybe not, but at least enough to be a PA. Anyway, my other neuro knew I KNEW what can happen. What could happen in her bed while sleeping at night. While at school away from me, on the school bus, during meals. I know what COULD happen to our precious girl. I just spoke with Make a Wish for heaven’s sake. But if I take every step in front of me thinking about what COULD happen, I’d never get anywhere. I take my strides into a foggy future with long quick steps. I get it, I really get it, this was important to him to share, but I won’t tip toe around this world with what COULD happen following behind me.
So we go to South Dakota with a bike to raffle, a bike run to run, an auction to auction with purpose and meaning. We want a cure. We want in the future a little girl with CDKL5 will get a newborn screen and when she tests positive for CDKL5 they will give her medication that will keep her from ever going to a Dr. letting her parents know that at any moment a seizure could take her life.
So if we get a wish granted and when that day comes where CDKL5 is cured I will write MAW a huge check giving the money it took our wish to be granted back in full.
So wish us luck, on the flight, on the raffle, on the run and the auction, pray for safe travels and goals to be obtained, and some seizure relief while we are far from home.
Thank you to all of you who support us and love us.
HOPE-LOVE-CURE CDKL5

Here is the bike in it’s finished form