We had LilyAnna's Splash for a Cure on July 10th, which was AWESOME! We did very well! Was able to donate over $5,000! It was a great event! Lots of folks came out, our community center was perfect! Kids were in the pool, playing in the field, playground, lots of folks eating, bidding on silent auctions.. we had a fellow CDKL5 sister from San Diego make it! We had a mermaid.. seriously. We did! Thanks to Fairytale Events! It was awesome! Can't wait to do it again next year!
Then just a few days later the girls and I packed up the Prius and headed to Albuquerque, New Mexico to stay with one of my longest known childhood friends as we made a pit stop there before moving on to Colorado for Lily's clinic appointment in Aurora!
It was a good drive. The girls were so good! Lily had a huge seizure right at the start so she slept most the way. Andi Jane sang, played on the Ipad and just was Andi Jane. We stopped for dinner at Applebees's in a little town 2 hours away from Albuquerque and that took longer than necessary which ended putting us in the middle of a rain storm in the dark. No fun. I white knuckled it to my friends place and it was after 9pm when we made it. Andi got rather whiny on that last drive and then struggled falling asleep that night. She was a bit of a hot mess. My sweet friend had a great room for us, Lily slept on an air mattress on the floor next to the bed and we all finally got to sleep and woke up to a super soaked Lily and I was up and at em to get her all cleaned up. Poor girl. I got to do some laundry as well. House guests from hell right here!
My friend had to be at work early and I found out my mom was gonna meet up with us (yay!) in the ol ABQ so we had to wait for her. We had time to kill and a strange town to do it in. But thanks to the power that is facebook, I had a fellow August 02 board member in ABQ and we decided to meet up!
Very quick background, when I was pregnant with Lily I found myself all over the internet reading about my swollen feet, my cravings, my mucus plus and all that comes with that beautiful pregnant belly. In my searching I found IVillage and there I found an August 2002 expecting group. I introduced myself and that was it, friends. Then it became and August 2002 playgroup and now we all have almost 11 year olds and should call ourselves August 2002 preteens group, crazy. We still stay in touch online. I know it sounds crazy. But these ladies (and one guy) were who I cried to when not knowing what was wrong with my baby was too much to handle. I had to be strong on the outside for reasons I have no answer for and have long since thrown in the wind, but back then I kept a brave face and would cry in private to my group of friends behind my computer screen. I've actually met many of them. And will continue when I am in a town and someone says "let's meet up!" I will! We are all on facebook now and have faces much more than we ever did before. Oh you silly internet always upping things.
So yeah, my friend said let's meet and I said I have wanted to eat at Tim's Place since I saw it on the news one night so that was where we met. And we met Tim! He was so sweet! The best restaurant owner/greeter I have ever seen! After breakfast I realized my mom was still hours away so we then decided to hit up the museum! That was fun! Lots of dinosaurs and science stuff that seems to fascinate everyone from the 6 year old to the 34 year old. It really was a fun day! Then we got ice cream, on a rainy 60ish degree day, and finally met up with my mom.
Long story short we got to Colorado Springs about 9:30pm and got room service and hit the hay.
Our sleeping arrangements there were Grandma and Andi and Lily and me. I thought I wouldn't sleep with wild Lily, but I was wrong. She slept all night snuggled next to mama. It was such a treat! We slept til 9am! What?! We were at the beautiful Cheyenne Mountain Resort and had to enjoy the view at breakfast and let Andi swim before we had to hit the road again.
Again Lily and I snuggled up together that night and she slept beautifully. Soaked all their linens of course... again... house guests with the mostest! And then that AM mom, Lily and I were off to Aurora for our clinic appointment. We started the morning with an early lunch with other CDKL5 families and Rett families also there for clinic. It was awesome to get to meet so many wonderful families and beautiful kids! I was so happy to finally have my friends meet Lily too! Such pride I take in being her mom.
It was a great experience! A lot of wonderful ideas, from seizure meds to change around to sleeping ideas to get her to sleep better... apart from sleeping with mom each night :) unfortunately they said spinal surgery is probably way more sooner than later, I thought we had a few more years but will see what our guy says. I am afraid he will agree. He spine isn't getting straighter on it's own. That part makes me want to vomit. Actually writing that made me throw up a little in my mouth. My baby girl. Ugh.
They said she is in the middle of puberty, from a 1-5 on the scale she is a 3. Awesome. Say that could be the reason for her seizures becoming so bad. And they are BAD! Every day she had at least 2 large ones. She had one in front of the neurologist who said that she had several seizures in one seizure. I was glad he saw it. Poor kid. Those things wipe her out too. Ruin her day. She sleeps for hours afterwards. :( I hate seizures. They suck.
Although the cardiologist didn't show I did get to see her so famous EKG that I fought so hard for. Cardio said it was fine. I saw that it said on it flattened t-waves. Again. I guess there is nothing that can be done, but it just sucks to have a heart that doesn't beat normal, especially when she has all her other things that go on as well. But it is just another Lily-unique thing. Like her bendiness. She impressed everyone with her bendy ankles and neck and arms, they said it isn't necessarily CDKL5-like but they don't think it is a condition in addition too, they think it is just another Lily-unique thing.
It was a good day. There was a lot to take in and a lot covered. A lot of tips that were all written down and a lot of talking and brain picking and snacking. It was a wonderful day that Rocky Mountain Rett Association helped to put on and it was really nice to be surrounded by kind families who get you. Oh another funny coincidence, one of the women with Rocky Mountain Rett that was making sure everyone was well taken care of looked very familiar.. long story short, I met her in Utah back in 2008 when Lily was at Shriners, pre dx, the mom looked at Lily and said I really think she has some type of rett. I said me too, but nothing yet has been conclusive. And kid you not weeks later we got the call. I was like oh my gosh, I met you in Utah! Oh the small world it is we live in.
After clinic mom, Lily and I got a beer and dinner at BJ Brewery. Lily stuck to root beer although I bet she could have used a beer as much as mom and I did.
That night Lily moaned all night long, hardly slept and then puked all over the bedding. Anyone want us over to stay?????? We spent the rest of the night on the couch with a bucket just in case, but never needed it. Not my favorite night. I have no clue what that was all about. Lily is not a puker. At all. Unless she is on keto, but she isn't. So no idea what that was all about.
Next day up and at em... played with cousins, drank coffee, munched on breakfast said our goodbyes and hopped in the car again to go to Castle Rock to have lunch with my dear friend and IFCR Board President and family while she was staying with her good friend. Let me just say lunch turned to dinner and dinner turned to breakfast. It was what I call a very good date :) Andi loved playing with Lily's CDKL5 friend, and the daughter of the sweet family that opened their home to us. It was such a wonderful experience. Lots of talking around the dinner table. What a wonderful way to decompress after such a long clinic day.
But our time there had to end as well. We still had to get back to Albuquerque to get my car and make it to Greer that night. And we did. It was about 8pm. Long day, but the girls again were real troopers. It was a good day of traveling. Slept in Greer, finally got to see Andrew and Oliver again and then went home on Saturday. Almost one full week away! It was good! It was long! It was exhausting being the sole carrier of Lily. And I mean that in the kindest way possible, but it is hard, she was measured at 4'10" and 70 lbs. It was a lot of lifting and changing, bathing, etc. A lot. But good. It was a time of bonding with my mom and daughters, it was a time with bonding with friends, making new friends, learning about this condition that changed our lives forever. It was a good trip. Memorable.
We got home Sat evening and the girls went back to school on Monday! We had a lot of shopping to do on Sunday, and laundry and all that fun stuff.
I still don't feel like we are all situated yet. I never really feel all that situated. I most of the time feel like I am surviving, not thriving, but I am at least conscious of it and working on getting back into the groove and loving this wonderful life I was blessed with.
Gotta get back to my schedule, back in shape, back in the word. I let a lot go this summer and it always makes me feel like I am running up a down escalator.
I'm working on it and know I will get this thing back in working order.
Thanks for taking the time to read the ramblings of this crazy mama.