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!