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).

Guess What We Got?!

Hey! Guess what we got?! We have Car Decals now!! Here is what they look like-

They would fit on to a postcard if you were wondering about the size.

If you donate $5 dollars you can get one! The money from these goes to my team.

We also have shirts if you want one they are $15 dollars. The money from these goes the DFW Walk. Here is the shirts-

Awesome right!?!

Let me know if you would like one or both! 

Email me at eilish.mangnall@gmail.com or contact me on Facebook.

Thanks!

Ice Water Challenge!

So, if this is what it takes I will pour ice cold water on my head for every $20 dollars I get! 

For example, if you give $20 I will pour 1 bucket on my head!

Or, if you give $100 I will pour 5 buckets on my head!

I have a BIG grey bucket that I will use.

Fitting right!? Hydrocephalus means "water on the brain". I'll pour water on my "brain"!!

Who is with me!?!? 

http://tinyurl.com/kjcw7yf

Bonnie and Dolly!

This video almost perfectly sums up how Bonnie and Dolly act to each other.

It's called Double Trouble by Simon's Cat.

That look from Dolly!!

The Cat

We also have a 5 year old cat named Kitty. I don't know if I have introduced her yet. I promise that's all the animals we have... for now. 

We don't see Kitty often - she only comes home to eat and sleep. Her job is obviously very busy because sometimes she may not come home for weeks on end. She does like to bring home her nightly kill, though.  (Which ranges from lizards, snakes, birds, frogs, squirrels and rabbits.) Kitty only likes attention from approximately 3am to 4 am and 10 pm to 11 pm, but you may not seek her out for attention.  She will come to you - if she has chosen you - in those times when she wants, and only when she wants you to pay attention to her.  Those are her rules.

When she is home she spends most her days hiding out in the dark guest bedroom and will glare at you and say a few choice words if you dare to enter "her room" and disturb her. She has gotten along a bit better with Dolly since we have gotten the pups. They have found something in common - a common hatred of the little furry things. I'm sure Kitty looks at Bonnie and thinks, "I've killed animals larger than you." Her and Clyde DO NOT get along - mainly because Clyde tries to chase her whenever he can. Kitty finds Bonnie very interesting to watch, but doesn't like Bonnie. Bonnie probably has way too much energy for the cat, and Kitty is unsure if she's allowed to attack Bonnie since she lives in the house.

The cat does not act like a cat. She won't play with any cat toy or boxes or laser lights or feathers…nothing. She does sit in strange places though and lastly she'll never be featured in a Cute Cats video on YouTube. (She's cute, but she doesn't do anything cute.)     

Her face.

She did keep me company while I recovered from my latest revision. <3

I don't get how this can be comfortable?

Or this?

If You have a Revision…

So, after my latest revision in 2012, I thought of some things I wish I had done to make healing more comfortable. OK, I admit, going to 2 concerts and a road trip within 10 days of the surgery probably didn't help. :)

The number one most important thing I think you should invest in is this:

It's a kid lap tray thingy that costs about $8 at Hobby Lobby, but one thing I hated was repositioning myself so I could eat from a TV tray. This thing just sits on top of you and its got places to put things and a writing/drawing/ eating area!

I didn't think of this until a long time later - even though we had one of these pillows in the house. Getting comfortable is hard enough with a shunt - getting comfortable after shunt surgery is far worse. Turning one of these pillows vertically (depending on where your shunt is) and laying in that might have helped me.

I also would say to get some crafty like things to do -  if you like crafts - or just something to keep you busy when you can't move around.

I learned how to make these bracelets:

I also learned how to make a paper crane - well I learned how and I think I've forgotten it by now...hopefully it won't take another shunt surgery to help me remember!

As most of you who have had lots of surgeries know, getting out of the hospital as soon as possible is the number 1 priority. After my last revision, I was home within 36 hours. I did whatever it took to get out of that place and be back home where it was more comfortable.

But even more importantly, it's good to make sure your annoying younger brother goes out of town when you get home so you can have quiet recuperation! :)

A dog that does this for 2 weeks straight while you recovery is also nice <3 

I dressed her up for St. Patrick's day!

Sweet Dolly!

Max!

Remember that little pup I babysat? Well I just wanted to share that he got adopted!! Yay! Enjoy your forever home and family Max!! 

Little Maxie! 

Bonnie and Clyde are Simple Dog and Helper Dog.

This is a pretty good (probably almost exact) example of what goes on inside the minds of Bonnie (Simple Dog, the one on the right) and Clyde (Helper Dog, the one on the left).

(These photos are from... yep you guessed it! Hyperbole and a Half, my most favorite blog to read-ever! The pictures are from a post about moving.

Here is the link)

How similar Bonnie and I Are

Since I have had Bonnie each day I find something else that makes us very similar. Guys, seriously it's almost freaky how similar we are.

Not only do we both have Hydrocephalus, but we also have the same eye conditions Strabismus and Amblyopia. 

We both are super tiny. She was 3 pounds when we got her in March 2013 and she is only 6.5 pounds now - at 1 1/2 years old. Clyde on the other hand is now 16 pounds. I am also very tiny, an XL in the girls section is still too big for me. 

We both have weak ankles and stand in a really weird way that I can't explain. I would need a picture to show it, but I have never thought of taking one.

We both are easily entertained, give Bonnie a orange cat food cup and she is good to go. Me give me some paper and something to color with and I'm good to go.

We both are TERRIBLE about drinking enough water. My mom is constantly reminding me, and I am constantly "reminding" Bonnie. But, in a way "reminding" Bonnie has helped me remind myself. 

My grandma says we have a mix of shyness and boldness or independence. I used to be very, very shy - I have gotten better, but I do still get shy.  Bonnie is shy until she sees/ meets you, up close, because she can't see well. I think we are independent too. 

Bonnie can't see well, but she loves to watch the dust floating by, and my mom says I used to do that when I was little. 

Bonnie and Clyde are from the same litter and I had a twin sister.

My sister had a heart defect and Clyde does too.

Also, we both have brothers, who act like brothers... beating up on us and stuff. Being brothers.

We both like to swim for the most part.

We both LOVE to be outside.

We are both very happy and excited.

We both are ok with thunderstorms.

Since we got Bonnie her hair has changed from black to dark brown like mine.

We are also very unique too and "special" in a way and sometimes awkward as well. 

We kinda are both socially awkward in a way.

That's all I can think of now, but I feel like I am forgetting some. Another way Bonnie and I are similar - we forget things!

Bonnie Likes to Helps Me Garden

     Bonnie likes to help me plant plants, and water the plants. The other day I was planting an avocado tree and went to go get some water and when I came back I found Bonnie like this. She tries to stand in every pot I plant something in.

standing with the avocado tree

     She follows me back and forth and waits for me to get water, dirt, or a plant and then she follows me back and just sits and watches me.

     However, she is not being very patient with the carrots and pulls them out along with some flowers that I guess she wasn't a fan of! ;)

Flower she didn't like.

     I get these little tiny flowers that I have actually never seen what they look like because someone (Bonnie? Clyde?) bites them off before they bloom. 

    Also one of her most favorite things in the world is helping me water all the plants. Seriously, she gets so excited! We unroll the water hose and water the plants and then we go to the grass and she runs and bites the water and sticks her head under the stream of water. She loves to run through it and then it makes her sneeze and after a couple minutes she is soaking wet and shivering. So then I take her inside to dry her off. However, she tries everything to go back outside and play with the water hose.

Me and Gaucho

Gaucho is my stuffed animal that I love and he has been through everything with me. I've had him since I was born and he's been to basically every single Dr. appt. and he has been at EVERY surgery. I can't remember a time when I didn't have him. You can see him in every picture of me when I'm in the hospital. Also, he comes with me on every trip. Yes, even now, he still comes on trips with me. 

The hospital even gives him his own hospital bracelets!  When I had my last surgery at 15, he came in the operating room with me and the nurses still put one on his wrist.

Gaucho at my 8th surgery! 

(those are probably coffee stains, since I would share everything with Gaucho and yep I've had coffee like my whole life…)

Fun fact: (well its a funny fact, maybe). In my mom's Facebook post about this photo she says this is my 7th surgery. Later, at the beginning of 10th grade we had to list my surgeries for my neuropsychology evaluation. We went back and looked through my baby book for the dates and… my mom realized she had left one out - she had literally just forgotten about one entire brain surgery, so my whole life we were saying I had one less surgery than I actually did. 

Of course my mom feels like the WORST parent EVER, because she had forgotten one of my 8 surgeries. But, I had a lot of the surgeries one right after the other so there was a lot going on - (6 of my surgeries were before I was 4 and she was also taking care of my baby brother!)

We Have Raised 3% of Our Goal!

We have raised 3% of our goal. $330 dollars.

We would reach our goal:

If 97 more people donated $100 

If 194 more people donated $50

If 387 more people donated $25

If 967 more people donated $10

If 1,934 more people donated $5 

If  9,670 more people donated $1 - theres about this many people living in Lantana...

Eilish's Donation Page (http://HAwalk.kintera.org/faf/r.asp?t=4&i=1098262&u=1098262-400879978)

Reminder!

Hey! Just a reminder, the walk is 70 days away and we really hope we can reach the $10,000 dollar goal for donation, but we can't do it without your guys help! Here is the link:
Eilish's Donation Page (http://HAwalk.kintera.org/faf/r.asp?t=4&i=1098262&u=1098262-400879978)

Thank you,
         Eilish and Bonnie!

And thank you so much to those who have already donated!!

Bonnie and I at the Houston walk last year!