Some More Facts For You

Did you know?

- Two-thirds of our military service members returning from Iraq and Afghanistan with moderate to severe Traumatic Brain Injuries (TBI) are likely to also have Hydrocephalus. 

- Originally invented over 50 years ago, shunts have the highest failure rate of any medically implanted device. An estimated 50 percent of all shunts fail within the first two years. 

- One quarter of a million Americans may have Normal Pressure Hydrocephalus (NPH), which is most common in older adults and seniors. 

- Without appropriate diagnostic testing, NPH is often misdiagnosed as Alzheimer’s or Parkinson’s diseases.

School part 3

      My next - my current - High School is Texas Connections Academy of Houston.  It's online homeschooling, so my mom doesn't have to make up lessons for me, it's like all the online college classes.   My parents said I could do it since I am really good at scheduling my time and keeping myself on track.  We were kinda given the impression that I would be able to catch up on my classes (the ones I fell behind in due to my surgery). I guess in some ways I could say it’s better than my old school - because I do get to decide when and what I study - like my old school, but it’s not great or even good for other reasons. But, it's just the same thing over again - they won’t accept (or understand) my 504 Plan…some of my teachers are not available when I need help (some only have office hours a couple hours a week). And it's hard for me to understand what they are saying - even when we are Skyping. I mean, I can hear and see them just fine, but they seem to only be able to think of one way to explain a concept. No matter what I ask - or how I ask, they give me the same answers.  "Live Lessons" are like the classrooms and class time.

     For example, since it's an online school we don't get textbooks. They are all available online.  Besides the fact that the school's website is slow - it's hard for me to read stuff on the computer. So, supposedly, I should get a copy of each textbook that I need, but the school says since it's not in my 504 from my old school (which did provide me with textbooks) they can't give me any. So, we bought the ones I needed most, which I really needed all of them, but since these textbooks are so expensive, I chose the top 3 I would be using the most.

     I’m thinking of trying yet another school next year. I'm still not caught up and will practically have 5 years of high school...oh well. My mom is making me go to the public high school I'm zoned for, where my brother is going…I really don't want to go!

(photo from the awesome Hyperbole and a Half)

"The Absolutely True Diary of a Part-Time Indian" by Sherman Alexie

 

      So, a couple weeks ago I read "The Absolutely True Diary of a Part-Time Indian" by Sherman Alexie...and I finished it practically in one sitting. I finished it by the end of the day and STILL did my school work. THIS DOES NOT HAPPEN. THIS HAS NEVER HAPPENED. I never read. I hate reading, it always hurts my eyes. Or the topic isn't interesting. Or I give up because I read a whole page and know the words I'm reading, but then I get to the end of the page and I can not tell you what I just read...or I re-read a line over and over and over and over...or I lose my spot...or I have no idea what the author is trying to tell me...or it makes absolutely no sense. Or any combination of the above.

    But. None of that happened when I read this book! It made perfect sense, it was crystal clear, I was interested in it, and I don't think I re-read too many lines AND I could get to the bottom of the page and would be able to tell you what just happened!!

I think it what might have helped some is that Sherman Alexie is from the same area of Washington State that I am from -  so I knew the places he was talking about! Also he has Hydrocephalus too! And that got me to thinking that maybe I understood his book so well is because maybe we think similarly -  or our minds work the same or something like that!

March of Dimes Walk

      The March of Dimes walk went great!! I just wanted to thank everyone who donated and walked with us! We raised $1,000!! Woo hoo! And Hanley and I finally got our names on a tower along the walk route!!

      They had some new stuff (or at least new to me) this year, like writing a message on a balloon and letting it go, or a poster that "surviving preemies" can put a hand print or foot print on and a memorial tree cork board to put names of preemies that didn't make it.

And our pictures were in the Garden of Hope like every other year!

Less Than a Week Until The March of Dimes Walk!

     

The March of Dimes walk is less than a week away and there is still time to donate!! 

Eilish Mangnall March for Babies Donation Page

My mom and I at last years walk.

What it's Like to Live With Hydrocephalus For Me. The Annoying Side of it.

   This is not to be confused with symptoms of a shunt failure. I'm talking about things that have developed or happened because of Hydrocephalus. These are my "side effects" and everyone has different ones.

     

 My bad eye sight is one of them. I have strabismus/amblyopia and am *really* far sighted. I have been wearing glasses since I was 11 months old.  When I got the glasses I was also learning how to walk and had just had my first shunt revision, and had to wear a patch on one eye...so I was just a mess. I had my eye surgery at 9, but didn't get contacts until I was 12. That was a great day!

My crazy eyes.

Me with my glasses, I was around 11 months old.

    I also get quite a bit of headaches. These are not normal headaches. I think they hurt way more than what other people consider a normal 'headache'. The weather can play a role if I get headaches, if it's storming I usually have a headache. Sometimes, if I lay down for too long I get a headache, so for instance, if I go to bed around 11-12 at night, I always have to make myself wake up at 8-9 am. I have noticed almost every time I wake up at 10 am or later I have a headache when I get up. Sounds strange, I know. I also rarely feel like sleeping during the day. The last time I took a lot of naps was right before my latest shunt revision. 

      Sometimes I feel like the shunt and tubing are in the way. I don't wear heavy or big necklaces because of where my shunt tubing is placed. It runs down the middle of my chest, right under my skin - so necklaces always bother my tubing. The shunt is behind my right ear, and the tubing runs down the right side of my neck until it veers over to the middle of my chest (Before my last revision, the tubing went straight down the right side.) So, carrying a bag on my right shoulder is even irritating. It's also annoying because I'm right handed. There is lots of scar tissue on my right side because of all the revisions so that's probably where the soreness and weakness come from.

     OH, and headbands are out. I can't wear those since they sit right on my shunt. Swimming goggles too. My brother always wants me to go Scuba Diving with him - but that doesn't sound like the best idea for a thing for a person with a shunt to do. Helmets also can irritate my head.

     I've also had numerous people go searching around my head to see my stitches or scars, yes...even only a couple days after my surgeries and, no...it wasn't the doctor. While I don't like when people try to touch the scars or look for them - I've never had a problem with people seeing all my scars (I have a lot on my abdomen too), so I still wear bikinis.

       More often than not my shunt makes it pretty difficult to find a comfortable sleeping position at night. I  also can't do a lot of stuff that makes my head kind of bounce around, like running or workouts with a lot of jumping up and down type stuff.  Even being on a trampoline can be a nightmare - especially when there are other kids jumping with me. Which is why my mom has rarely ever let me go on a trampoline. (But she doesn't like trampolines for anyone.) I loved gymnastics and doing the bars, but doing tumbling always hurt my head and the place where I did gymnastics acted like it was 'all or nothing' kind of thing so I had to stop that.  They took their gymnastics seriously and didn't have time for people like me who just wanted to do it for fun. 

     However, I have never had a problem with roller coasters, I actually LOVE going on them!  but I don't do it very often at all, because of my head. That's another thing my mom doesn't like me going on, so I'll go with my dad or brother. I also enjoy tubing on the lake, but I don't go on choppy days and everyone on the boat knows I can't do anything crazy fast. Even if I might want too. :)  I usually ride with our family friend's toddler, because they will go waaaayyy slower. I also love skiing! I always wear a helmet and only do the easy and medium runs, though I did do a Black Diamond run, just to to say I did one!

       I used to play soccer when I was really little, but since I wanted to be the goalie that didn't last long. I also wanted to play hockey, but at the time I wanted to play there wasn't an all-girls team, meaning I would have had to play with the boys.  At that time, at that age, checking rules were different - and since I 1) would've been a new player, 2) am very small and 3) would've been playing against boys who were much larger...my parents said it probably wasn't a very good idea.  Practically any contact sport or a sport with a ball I can't play (though there are kids with Hydro who do - like I said, everyone is different). I did take Tae Kwon Do, and got to Green Belt, but I had a a lot of accommodations for that. The instructors were really cool about making sure I learned as much as I could and yet still be safe.  However, I often sat out for every day in P.E, because I couldn't play the games they were playing. Or, because my PE teachers were too worried that I would get hurt on their watch.

     I also struggle with school. Science, English, and Math are my worst subjects!  It takes me twice as long to learn, process and answer stuff than other people.  This is so frustrating. I'm just now understanding 6th-7th grade math and yet I'm in Geometry. It gets tough when I spend 2 1/2 - 4 1/2 hours on a test, yes 4 1/2 hours, and I'm actually feeling really really good about it...and I think my teachers are going to be blown away with how well I did...and then find out that I failed.  So now on top of homework taking me super long, I'm doing numerous correction papers and tests and tutoring. It gets very difficult. And frustrating.

      I also DO NOT understand sarcasm, irony, or symbolism like what so ever…which sucks. It also sucks even more because my English teachers this year LOVE irony and symbolism and almost every test and quiz has questions in it about irony and symbolism. I just don't get it.  And guess who fails those questions because they makes no sense to her…yes me!  My dad and brother take full advantage of this - trying to be super sarcastic, thinking that I will catch on. It's just annoying.  My mom thought the best way for me to understand these things was to make me start watching 'Monty Python and the Holy Grail' from the time I was about 4. I DO get those jokes! But I've seen it about a million times.

It's a Fact!