The Walk!

    The WALK was today and oh my god I can't believe I'm writing this I'm so "walked out"! I had so much fun! My grandma finally got to come to an HA walk and so did some of my friends! :)

   First off, we had to get up at 4:30 am! That's probably the only time I was excited...well more "ok" with getting up at 4 in the morning. (Us and the other 2 head families packed our cars and the U-haul the night before.) We got the pups up and dressed in their team shirts and we got ready and headed over to Frisco. We had 2 cars from our house, 2 other cars and the U-haul all filled with stuff! 

   Of course, it was dark when we got there and the park didn't have lights on! We also got there only to find out the tables and chairs and the other tents that we needed had not arrived and wouldn't be there for another hour!!!

We all started taking the stuff to their places in anticipation of the tables and tents. Also, the cheerleaders didn't arrive when they said they would so my brother and his 15 year old friends and some other volunteers had to start making the balloon arch. (Something no one had done before!) So, that took maybe 10 volunteers away from doing other stuff that needed to be done before registration! The tents, chairs and tables finally arrived and we ended up getting set up pretty fast for all that went on...or at least I thought we did.  

   Once it was all set up and teams started coming in I got the pups and we went around and welcomed everyone.  We entered the t-shirt contest. We didn't win but our friends did! Yay! 

   Me and a couple other kids got to cut the ribbon and lead the walk, it was fun! I actually had a team this time, my friends walked with me and the pups only tried to jump out like 37 thousand times. Which is funny because they are so well behaved at these things, but all it took was us saying their names and they kinda got a bit embarrassed for being yelled at and would hide for a bit in their stroller and then test it again. Clyde jumped out and so we had him walk for a bit and he saw how it wasn't that great of an idea after all. He didn't try to jump out after that.

   The stroller is so funny to me since I have always had big dogs and now I have these 2 itty bittys! But, the reason we have the stroller is for Clyde since he has bad back legs and a bad heart so he can't walk that far - especially in the heat. I would tell people "Ya, it's because Clyde has bad back legs." and he would lunge out of the stroller and run off like "I dunno what you're talking about, my legs are working just fine!" With his tail flopping in every direction since he can barely control or feel his tail. I had to chase him around quite a bit.

   After the walk we got our team photo taken :) and Bonnie and I put our handprints on the backdrop for the photos with the other people who had Hydrocephalus! It is also so much fun getting to talk to everyone and meet new people! So many people showed up! To be honest I didn't even know there were that many people living in the surrounding area who were affected by Hydrocephalus! 

   Then it was time to take stuff down which we kinda left to the guys because we had packed the night before and helped unload in the morning - it was their turn. People (mainly the boys) fought over the leftover Raising Canes sauce and we now have a bag of oranges and one of bananas, and also a bag of buns! There were still lots left too! The boys also brought the inventory of fruit down, because they threw it at each other. After we packed everything up and were just about to leave the fire trucks showed up for the walk... 

   We headed home unpacked the car sorted stuff that was ours and going to stay at our house, or go to someone else's or going to storage. Then we got back in the car drove over to our friends who had the U-haul un-packed our car and helped finish packing up the U-haul for them to take to storage and then we were finally done! Sorta, I got home and started a "keep, get rid of, change, and new ideas" list for next years WALK and my team, while the whole walk was still fresh on my mind. Knowing me all my ideas will leave my brain as I sleep! 

  It was a very good turn out especially for our first walk! I think we raised around $55,000 - we had originally thought we would get about $18,000!! And about 520 walkers showed up! We did really well! We all thank everyone who donated, shared something, sponsored, spread the word, walked, and volunteered!! You guys rock!! 

The WALK is 5 Days Away!

Hey everyone!

I am SO excited the WALK is 5 days away! Please, please, please come out if you can!! 

Thanks to everyone who came by Buffalo Wild Wings on the 10th and 18th! We got $145 dollars from the 10th! Yay! (We are still waiting to hear what we got from the 18th.) 

I have been so busy with the WALK! I'm making some props for our photo booth and they look really cool! :) I'll have to post pictures when I finish them! 

By the way, We are at 37% of our goal! Let's try to make it 50% by the 27th!! Here is the link to my personal donation page:  http://tinyurl.com/kjcw7yf

20% and Buffalo Wild Wings!

WE ARE ALMOST AT 20%! Woot Woot! Thank you guys! Let's keep it up! 

Also, did you hear that Buffalo Wild Wings in Highland Village is helping us out! On 9/10/14 and 9/18/14 they will donate 10% of all pre-taxed sales from any guest that presents this fundraiser ticket! This will be going on all day on both days! This is so awesome!!! Please come to the Highland Village Buffalo Wild Wings on the 10th and/or the 18th!!

September is Hydrocephalus Awareness Month!!

It's September 1st! That means it's the first day of Hydrocephalus Awareness Month! You can show your support and help raise awareness in so many ways! 

You can change your cover photo on Twitter or Facebook to one of theses awesome banners on Hydrocephalus Associations Facebook: HAM Cover Photos

(I will probably have this one!)

There is also this one (it might have a couple different choices): More Cover Photos

And you can even change your profile pic to one of these (or you could do a new banner and profile picture each day!)

HAM Profile Pictures

This is what they look like, but some say "I love someone with Hydrocephalus, my sister.", etc. They have one for basically every person/situation.

And you can post facts from this link: It's A Fact!

For example,

I CHALLENGE everyone who sees this post to change their profile picture or banner and if you're really "daring" post at least one fact a week or share some of the incredible amount  of information I will be posting! 

Yay! So wear blue and raise Awareness for Hydrocephalus and Hydrocephalus Research!

Update About the Walk!

Hey! We have raised almost 14% of our goal! $1,395 to be exact! That is awesome!! We are doing so well and hopefully raising a lot of awareness as well! 

I have seen a couple people do the ALS ice bucket challenge and before they even do that they have talked about raising awareness for Hydrocephalus too! That is so awesome! Let's keep it up!!

I want to thank everyone that has donated, shared, or mentioned Hydrocephalus! Anything helps. We love likes, but sharing really, really helps! 

The walk is only 31 days away! I am getting excited! There is still tons to do, I have stuff to do for my team, and there's still lots to do for The Walk. We are looking for volunteers to help us with coordinating the walk and sponsors for the walk! So if you or anyone you know might be interested let me know! :)

Oh!! And these tee's here:

TODAY is the last day you can order them. You can still order car decals though, please we have a million!

Nico Vega and Train Concerts

It was 10 days after my last revision when I was 15.  I was barely walking, and still was in a ton of pain in my head, neck and abdomen. They had to remove the old tubing that went from my head to my abdomen, and then they put in new tubing. But instead of removing the old tubing, they just left it "free floating" ... curled up in my abdomen. YAY! Nothing could feel better than that! Right?

My hair was matted and I refused to comb it. I have super thick hair, there was blood and iodine in it, and some hair was caught in the incisions. If anyone looked at my head, it hurt! It took forever to get in a comfortable position to fall asleep. At that time (before surgery) I had a bunk bed with a futon couch underneath. But when my shunt started to fail, I was unable to climb the ladder because I was too dizzy and clumsy and so only slept on the futon couch. The only drawback was accidentally whacking my head every time I got out of bed. Anyway. Fun.

The doctors luckily try to reuse the same incision site - you can only see about 1/2 the original scar... and yes, I have purple hair.

One of the many, many abdomen incisions...

I had tickets to see Train and...a couple days after Train...Nico Vega!  My two favorite bands!  AND I was not about to sell the tickets for anything! I had these tickets forever (we had bought them before we knew my shunt was going to fail.) I was going to these concerts. No matter what.

My Grandma and I! Having lots of fun at the Train show!

So, we packed up the mini-van, got me all propped up with pillows and comfortable in the back seat (my grandma sat right next to me in case I fell over - she is always so worried) and we headed down to the Houston Rodeo! I had so much fun! I was very happy we had seats, though, instead of standing like we usually do for every other concert. I wasn't in much pain at all during the whole show.  I even wore a crown on my head that crossed my incision and I had no problem. I sang to every song like I always do. Train played their old stuff and some new stuff. 

They put on a great show as always! I got a new shirt and finally met some people that I am friends with on Twitter, they were very nice! I felt as amazing as possible - so excited to see Train for the millionth time (it never gets old), until I got back to the hotel and the "excitement" buzz started to wear off.

So I thought, "Hmmmm, maybe that crown and dancing and singing at the top of my lungs wasn't the best idea, considering its 10 days after my surgery."  But, it was totally worth it! My mom gave me Advil and a sleeping pill, and I slept with my grandma (after being propped up). I couldn't sleep with my younger brother because it would be unsafe considering he turns into a Ninja in his sleep and probably would have kicked me in the head or punched me in the stomach. Yes, you read that correctly. The most non-flexible kid has done it before!

Just a few days later, was the Nico Vega concert back in Dallas at the Prophet Bar. I had been waiting for this show forever! I wasn't going to skip it.  Even though it was only 13 days after my surgery and there was a terrible storm (typical, usual Texas storm, but a freak out storm for the rest of the US) going on. And my mom tried and tried and tried to talk me out of it (even though she really wanted me to go, and she really wanted to go), since the Train one was so rough for me, but I wasn't buying it! 

We got to the concert and guess what? The power went out at the Prophet Bar, there were flood warnings, tornado warnings, and almost every warning possible for the DFW area, and the concert got pushed back a couple hours. The weather was absolutely crazy. The opening band couldn't figure out how to bring their gear in with out drowning it.  It ended up being a very long night, but then again it was soooo worth it!

We waited as the weather alerts kept popping up and I tried not to move. I sat for as long as possible, so I could stand for the whole show. My grandma came along for the show too, and I think her and I were the oldest and youngest at the show.  (We were the coolest, by far) I was right next to the speaker, which worried my mom. The venue held maybe 150 people at the most, but maybe 40 people came, probably because of the storm. I enjoyed it SO much, it was great!! I love how the the lead singer, Aja, moved with the music, I loved how comfortable they were with the crowd, treating us like friends. After the show, I met the band, they are such incredibly nice "normal" people. Aja (the lead singer) is from Oregon! Yay! Someone else from the Northwest! I bought one of Rich's (the guitar player) tank tops that he made in his apartment, and it's my most favorite tank top. (The next year I found out from him that I was the only one to buy that tank top.) The drummer Dan was very nice too, and the bass player Jamila was very sweet too. I think I heard that was one of her first shows with them.

Dan and I at the Prophet Bar

Aja and I at the Prophet Bar

Jamila and I at the Prophet Bar

Rich and I at the Prophet Bar

Their show was so small it was incredibly cool to see them in that type of setting - I feel so 'privileged'  -  and then so cool to see them 2 years later opening for Imagine Dragons at the American Airlines Center.

By the way, the line for people that wanted to meet Nico Vega at AAC went on forever!! How was this possible? After all, they were my band to begin with! But still, I was so proud of them. :) I also saw them open for Imagine Dragons at the House of Blues in between those 2 shows (Prophet/AAC), and when I went to meet them at the HOB show I had my tank top on an Rich got so excited when he saw me wearing that 'one of a kind' top! Rich also asked me to follow him, because he didn't have any Sharpies to sign stuff with!

Fun times!!
Find your band!

Ice Bucket Challenge

We raised $395 dollars with my version of the Ice Bucket Challenge! That means I have 20 buckets of water to pour on my head! Wow!

I did get 2 requests for me to not pour water on my head, making it  a total of 14 buckets of water (because of the amount that was donated)! Wow, still!

And we got requests for me to dump water on my mom's head as well. I think it sounds like 3 buckets worth. Bonnie is also doing 1!

So I have 10 and my mom has 3, and Bonnie has 1. 

(Now, I know there's people on the internet that would like to call that abusing a dog, so before those people want to throw a fit watch this video!) 

This is her most favorite game, it is all she wants to play! It's basically the only thing she "asks" ME to do with her! She only wants me to play this game with her, just getting a video of it was difficult enough. She doesn't like anyone else around!

(My brother mowed the lawn, that's a G in the back.)

I did 1 today mainly because that would be a really long and probably boring video of me just pour 11 buckets of ice water on my head. Plus that's all the ice we had at the moment! Here you go... it's pretty un-eventful, no screaming and squealing, sorry! :) My version of the ice bucket challenge.

And lastly, Bonnie's! (mom said she was going to do hers another day).