Some Facts For You

    - Hydrocephalus affects a wide range of people from infants and children to young, middle aged and older adults.

  - There is no known cure. 
  
  - One to two of every 1,000 babies are born with Hydrocephalus, making it as common as Down Syndrome (Most likely you have never heard of Hydrocephalus, but you have heard of Down Syndrome) and more common than Spina Bifida or brain tumors. 

   - Hydrocephalus is the most common reason for brain surgery in children. 

It’s been a year since we adopted Bonnie and Clyde!

 It’s been a year since we adopted Bonnie and Clyde!!

 Yay!

We first saw them at the North Texas Irish Festival in 2013. We had gone to the Festival the year before, but it was 2 days before my latest shunt revision - and even though I love everything Irish, one of the reasons we went was because my mom was trying to think of things to do that would keep my mind off of the upcoming surgery.  So the next year, we wanted to go back so I could actually enjoy it!

Baby Bonnie and Clyde!! Bonnie was a pound and Clyde was 2 pounds in this photo. This photo is from DFW Rescue Me.

We thought they were so adorable and tiny and odd, and Bonnie looked so goofy! But we couldn't stop thinking about them, so we went to 2 more DFW Rescue Me adoption events to see them again. Both times I held Bonnie for over 2 hours and my mom held Clyde! Bonnie would bury herself in my arms and hide from everyone. It was like she had already chosen me, and didn't want anyone else to find her!  Finally, we decided to adopt them. At first we were going to only get Bonnie - because, honestly, we didn't think anyone else would. There had been no interest shown on her adoption page. But since her and Clyde were inseparable, we knew they had to stay together. (They were found together in a box that was left overnight outside of an animal shelter.) We adopted them from DFW Rescue Me, a really great animal rescue group. When we found out about the pups medical problems they said they would help pay for the costs.

    

Sister and Brother riding home for the first time. So cute! It was cold when we adopted them and this was the only clothing items (in their size) that we could find. (By the way, we did not name them Bonnie and Clyde! That was the names given to them by the foster group. We called them Bonnie and Clyde while we were trying to think of other names, but by then, the names had stuck.)

I made them put the shirts back on…. look at that excitement!

Bonnie and Clyde are great dogs. I love them so much and I am so glad I have them! I was shocked when we found out about Bonnie and Clyde’s medical conditions. It’s so crazy, out of all the dogs we could of adopted and all the people that could have adopted them...we got them!

Bonnie Burrows

    Out of all of my dogs, Bonnie should probably be the last one to burrow under blankets, but she loves it. Look! You can't even see her!

She's right there to be exact-

So I put this on my bed when she sleeps under the blankets.

Or, this time when I took a break, before putting my bed together and Bonnie found the comforter-

I was freaking out, I couldn't find her. Turns out she had burrowed under the comforter. 

Bonnie feet!

Bonnie also likes to share sweatshirts-

School - Part 2

 High school is where it got really hard for me. Not only because it was high school, but my high school ended up not being a great school after all! 

     First, some history to get you caught up. I had gone to one middle school from 6th grade until through the first half of 8th grade. But 8th grade became stressful. The schoolwork was a lot, but I also was getting picked on by a group of girls. They didn't like what I wore, they didn't like my hair, my height - whatever. You name it. They didn't like what I brought for lunch. I tried talking to a teacher about these girls - and one girl in particular - but the teacher told me I needed to be nicer to that girl. The final straw (for my mom) was when a counselor called me out of class to ask me if my parents had enough money to buy me clothes - since the teachers had said they thought I was wearing the same thing every day. (That's another story too.)

       So I transferred to a charter school for the last semester of 8th grade, and from there I went on to their High School, which was a Media Arts Academy. The first semester actually went great, it was a self paced school so I ended get really far ahead in my work. I even finished some full courses in a semester! But, when I came back from Christmas break, things started going down hill. I was barely finishing assignments, and not passing very many tests either. I was falling asleep at school, which is something I never do. And then by the end of February my right arm started hurting so bad when I tried to do anything. I thought I had just pulled a muscle or something, but then my head started hurting and after the third day of my head hurting, even when I took medicine...I knew my shunt was failing. 

I went and got an MRI and from experience, I knew something was up when the nurses were all coddling me and then gave me a stuffed animal! Which I still have. I keep all the stuffed animals I get from the hospital or from people who give them to me as get-well gifts. Anyways, I had my shunt revision a couple days later and it turns out the tubing had disintegrated by my shoulder, explaining why my arm was killing me! The fluid in my head had nowhere to go so was backing up into my brain. I recovered really well and was back to school in 2 weeks, luckily 1 of the weeks was spring break so "technically" I wasn’t far behind in school, BUT I was still very very far behind in my work by now. 

So, I went up to my principal to get some help with getting caught up and all she and the school did was write up a calendar, pretty much…well that didn’t work, so I came back after summer and asked her again. I finally started getting something put together with her when one day I came to school and we had a new principal! So back to square one! 

I went up to the new principal that first day and introduced myself and asked for help and…this is where it gets great. The school wouldn’t do anything without a 504 (Even though one had followed me from the previous schools) so my mom started the process of getting that set up, again.  That should take what, 2 weeks? No. It took 11 months after my surgery...11 months!! 

Let’s start with...the new principal always sounded like she never wanted me in my 504 meeting, and she got mad that my mom said it was fine if I was in the meeting…it’s not like I was 6. I was 15/16 years old, I knew what was going on and I wanted to hear what they were saying and add my input. With just having Hydrocephalus I actually can get the highest 'accommodation plan'. The principal said she didn't even really know if I had a disability - as if I was making it up. (Probably never occurred to her to actually read my file.) I had been given 2 neuro-psychological evaluations - one from my neurologist’s office and one the school had me do. Even with BOTH of these - and a neurosurgeon's diagnosis - she wouldn’t give a me any accomodations. She even said - with her iPhone sitting in front of her - “well I don’t know what Hydrocephalus is.” Wait, I’m sorry, she said, “Well, I don’t know what Hydro-syphillis is”. Seriously. If I was her I would be doing some researching the night before or maybe even on my phone then? She also told me “Well, maybe if you go and get diagnosed with ADD/ADHD I can get you a 504 plan.”



    (Photo credit to Hyperbole and a Half)

     I told her how annoying it is having Hydrocephalus, because you can't see what is wrong with me, where as if I had a broken arm you could see that I had a broken arm.

I also said “Well, the teachers haven’t been that helpful.” and before I could go more into detail about that she says “Well, did you ask for help?” and before I could answer with a 'yes' she says “Well...then part of the blame falls on you.” That’s when I had had enough. I turned to her and I almost yelled, “It's not my fault! I have been doing everything I can and you guys won’t do your part!”
     
My mom had to go as far as threatening the school district by telling them she was done dealing with the school and she was going to hire a lawyer. So then, suddenly, the school was cooperative, and I got my 504 Plan. But by then the entire year had been wasted.  And that’s just my first high school…

March of Dimes Fundraising Update

I just wanted to update you guys on how much money you have help raise for the March of Dimes. In just 2 days you guys have raised $460 dollars! That's amazing!! Let's keep it up! We have 20 days until the walk.

Thank you so much for your help and support! You guys are great!

My First HA Conference

      In 2012 I went to my very first Hydrocephalus Conference and it was absolutely great! The Hydrocephalus Association has been having conferences for years, but I had never gone. It was definitely something I should've done earlier, considering I was 15 when I went and that conference was the FIRST TIME I had met ANYONE with Hydrocephalus.

Anyone!!

          It was really nice to not have to tell my whole life story just to explain a little story that I wanted to tell in the first place. Since most people don't know I have Hydrocephalus, or know what it is or how it affects me...I usually have to explain all that before I can simply answer something like, "So why don't you play Hockey like your brother?"  So every 5 minute story turns into a 15-minute one! (And usually gets off-topic). It was just amazing to be with people who understood me - who knew why I answered something a certain way, with no explanation. Unlike most other conversations, I didn't get strange looks or comments or anything! Everyone just understood me, and accepted me, for me.

    There were a lot of different classes about different topics. The teens went to a couple, but then our parents realized it would be better if they went to the classes and us kids just went and hung out in the lobby. I met a lot of kids and we all still keep in touch!

        The conference was in D.C so we had an Advocacy Day where we had to go to the Capitol to talk to our elected officials. My mom and I didn’t know until 2 hours before that we were actually the ones from Texas who were going to talk to Michael Burgess, our State Representative. We didn’t have anything prepared, so we prepared it on the bus ride over! We probably sounded so dorky! But at least we were able to talk to some Texas politicians about Hydrocephalus. And, I got a photo taken with Michael Burgess and he gave me a special coin.

       Another really cool thing about the conference was Mark Kelly was a guest speaker. If you don't recognize the name, he is the astronaut who is married to Gabbie Giffords. After she was shot, she ended up getting a shunt. 

The next conference is this summer in Portland! I can't wait!

Donate to March for Babies!

It's 22 days until the March of Dimes March for Babies! I know I'm posting this late, but if everyone could donate even just $10...it would make a big difference! Thank you so much!!!!!!

Follow this link for more details and to donate!

Eilish Mangnall March for Babies Donation Page

Hydrocephalus in Dogs

       Clyde and I are doing well, even though the vets say we are a 'bit odd'. He has had heart surgery to fix a bad valve, but that didn't work, so he is also unable to have surgery to fix the hole in his heart. He has to take medicine twice a day. One medicine is for his heart. The other medicine is for his back legs, because they sometimes don't work when he wants them to. You would think that he would be super lazy and slow, but he still likes to chase me and wrestle. Brothers.

        In case you are wondering, I really do have Hydrocephalus though; I’ve had CT scans and MRI’s. As of right now, I don’t need a shunt. 

        Hydrocephalus in dogs is pretty much the same as in humans. Any dog can develop hydrocephalus at any time just like humans. Though, it is more common for small dogs like me to develop it. The symptoms are even pretty much the same as with humans. The shunt is almost the same too. The shunt for dogs has the catheter and the tubing, and it still fails just as often. 

Here is what the shunts for dogs look like-

                                            This photo is from http://www.pethydro.org