We also went in for Dylan's EEG. We had to have her tired and we did an excellent job of that. Matthew stayed up late and I got up at 5 to wake her. I had to sing and dance in the car on the way to the hospital so she wouldn't fall asleep and we couldn't put her in her chair going in but it worked, and she slept when she was supposed to.
Miraculously enough, the new neuro reviewed her EEG and met with us the same day, not long after actually. He said he scans look normal (for her) and there isn't anything out of the ordinary (for her) and unexpected so we are staying on the same meds that we have been on for years. No changes there, yay. We are apparently supposed to have an EEG every 6-12 months, but the doctors here have been nice enough to stretch it out to the 12 months unless something comes up because they know what we have a lot going on.
On to the show! Dylan met Santa! She got a new bike!
Dylan's therapist Rachel put her on the list for an adaptive bike. I'm not sure how this works, the program is run through Wolfson's Children's hospital and it's totally paid for. 16 kids got new adaptive bikes this year and Dylan was one of them!
We had a bike in Utah that a friend gave us when their daughter grew out of it and we used it a little but it required that Dylan sit on the seat since there wasn't a belt (or enough of a belt) to hold her in place. We donated it because we didn't use it enough and knew someone would. I think it went to the school. I was excited to have a bike that fits her!
Once a child is approved and fitted by the therapists they order the bikes and the firefighters assemble them. Then you go see Santa and he gives them the bikes at what I now know is the Christmas party for the Firefighters Association of Jacksonville. It was a BIG party!
There were all kind of important people. Or people that fancy themselves important... the chiefs of everything, the mayor, the state attorneys office... person. Lots of people wearing fancy clothes and women wearing a lot of make-up talking about newspaper write ups about themselves and joining country clubs. Some people would say hi to me with the "I'm sure you recognize me" air about them... and of course I didn't.
I didn't know how long we would be there so I went with Dylan by myself and needed company would have been nice to have Matthew there but we didn't know if it would be over before the short day of school. Of course I know that there would be a lot of picture taking so I cleaned Dylan's nose before we went in and apparently I struck an artery because the edge of her dry little nose kept slowly bleeding and bleeding and I kept wiping and wiping. My word. I know most people aren't going to notice that right away but honestly... if you could stop bleeding I would appreciate it.
Once we went in, she got a little name tag and fitted for the cutest little helmet you ever did see. I signed some waivers saying it was recreational equipment and we will not break our arm on it (or at least not sue if we do). They also made sure we signed the thank you card for Santa. I assumed this card went to the people who run the program at Wolfson's. I think I properly conveyed how grateful we were for Dylan to be able to go on walks with us.
So there's a nice feast set up there and... vegetarians for animal reasons, skip ahead after this paragraph. THERE WAS A PIG. Like they legit roasted a full pig, shoved and apple in it's mouth and gave it Bud Lite eye bottle caps for eyes. It was a pig yo. My phone was dying so I didn't get a real picture but I took a screen grab from a video I saw online from the firefighter chefs to send to my favorite people to gross them out. I wasn't terribly comfortable dishing up off it's carcass... but it was delicious.
Me eating, then meanwhile, Dylan has apparently hooked a finger under her hair and pulled it out of her pony tail. I couldn't leave it! Could I? But the rubber band would break if I pulled it out and re did it... was it worth the risk? What do I do?! Honestly, I couldn't leave it, so I pulled out the band and what do you know... it broke. I literally broke a sweat trying to tie that little tiny rubber band back together to give it one more shot. I finally got it and got it in her hair, phew! I could breath.
Psych! She did it AGAIN! She pulled it out again! Then the band broke again and there was no hope for a second repair. But if I pulled the other one out, the other band would break and I would have nothing to tie her hair up with for even a single pony! Gah! Honestly! Crisis!
Nose bleeding, one half-hair done, mom breaking a sweat. You know at this moment I just knew it was going to be Dylan's turn to see Santa!
So I thought maybe they would let me have a piece of pipe cleaner (We made antlers for her helmet!) and I would some how tie it up with that. So I asked and this wonderful angel with flowing golden hair and wings said "Oh, you need a hair tie? Here you go!" She had what I feel was a little miracle on her wrist! So I take it back to Dylan and wrap it around her tiny pony about 25 times but for the love, we have two adorable ponies again and are ready for our photo ops!
(Lesson learned, I plan to have tiny rubber bands in my purse, in my car, in my bags... Matthew's going to hate this.)
They made a big deal about Santa and Mrs. Claus arriving, big, huge... it was time. They came and got the kids one by one when it was your turn and it was run like a very fast machine! When it was our turn we went up and sat down and about 6 cameras appeared right before our faces. Like so many you have no idea who to look at and when, and what in the world was going on, and chaos. She gets on the bike, more photos, and she's wheeled out the door. What in the world just happened!?
Santa did that thing that a lot of the Disney characters did where they stopped me and looked at me and gave me an extra hand squeeze, or an extra tight hug. It was so cute and I loved it but I felt like I was being pulled away. Nice Santa.
Outside she was fitted by a therapist from Wolfson's and it was AMAZING! She has a bike that fits her and holds her in place! Even the ones at the therapy place aren't fitted specifically for her and it was so fun to have her in it! She actually pushed herself a little bit. Yes!!! This is what we need! I think this will help so much with building her muscles once she gets out of her casts! I'm so excited to use it.
So Santa is done with his whirl wind and walked out waving and saying goodbye and one of the therapists said "Santa wait! don't move we have something for you!" Santa was so funny, he turned around, arms in the air waving and didn't move... She ran to him with the card we all signed and gave it to him. I'm not going to lie, I thought it was a little weird that she gave him the card. You know, the guy that showed up, hugged babies, and left? But whatever...
So there have been pictures here and there on social media about it. It was a big fancy thing and it a huge deal. One of the articles said that an anonymous donor pays for the bikes every year. Light bulb, are you ready? I think Santa was the anonymous donor! How amazing to be able to give anonymously but yet be right in the middle of it! He gets to actually give the kids their bikes and see how happy they are! Amazing, so freaking amazing. This kind of generosity and being the beneficiary of it is totally humbling.
It's really sunny and nice outside today (It's going to be 80* two days before Christmas!) but I put her on the bike to try it and she loved it when she was moving. when you stop she does that like jerk forward thing like "Why are we sitting here let's go!" Which is great. She pushed it a little but her right side is tighter and she would slow or stop when that leg was at full extension. We will get it. For now she is super happy just pedaling with someone pushing. I loved that she enjoyed it even when the sun was shining!
I think Santa was whispering something to Dylan the whole time. I don't remember him saying anything to me but it certainly looks like she is listening.
Can we talk about how adorable this picture is? Oh my word. I can't stand it.
This is Lisa - She's form Wolfson's and she arranges this gig.
Dylan got a bear from The Caden Project (And mom got a firefighter calendar, woo woo.)
Today on her bike.. She is happy, you can't tell though!
Dylan and the cutest little helmet there ever was!
(And a messy room, I cleaned it yesterday! She has late night parties and trashes it. Like a rock star.)
(And a messy room, I cleaned it yesterday! She has late night parties and trashes it. Like a rock star.)
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