Jett's Story

Hi, My name is Jett.  Most people don't call me normal, and that is why i'm going to blog about my story, because to me and my parents I am normal.  Part of my lip is missing and there is a big hole in the back of my mouth, I think this is called a cleft lip & palate. I also have a condition called PontoCerebellar Hypoplasia type 2 (I know, its a mouthful) Read more about it here.  It means that parts of my brain never grew when I was in mommies tummy, and people seem to think that I can't do things normal kids can do.  They say I will never be able to walk, talk, sit up, crawl, eat, or many other basic life functions.  I have a lot of good doctors that are going to help me prove some people wrong.  I'm going to use my blog to keep track of my accomplishments, I think there will be a lot of them.  People always feel bad for me, but the funny thing is, I'm the lucky one.  I have parents that hang out with me all day every day, before I moved away I got to see my grandparents more than most other kids, when people hold me I can always make them smile, but best of all: whenever I go to sleep I get to hang out with these really cool friends that all have wings… mommy calls them angels.

Mommy and Daddy call me their fighter Jett because they think I'm so strong… and I think they're right.  If they hadn't put this big tube in my tummy I'd show a picture of my 8 pack.  I've already been under sleepy medicine multiple times, once to take pictures of my brain, once to take pictures of my tummy, once to put a tube into my tummy because I can't swallow stuff in my mouth, once to fix the hole in my lip, and many other times for other problems.  I'm sure I'm going to have more sleepy medicine, but I don't know when.

Daddy is in dental school and has drug me and mom away from all of my grandparents and aunts and uncles and cousins for 3 years.  I want to write this blog so everyone back home can follow my perfectly normal story.  So here it is:

When I was born everything seemed to be fairly normal.  I could eat from a bottle, I slept sometimes, I pooped a lot, but I liked to do weird baby things like arch my back.  Everyone around me thought everything was fine, including the doctors.  One day I got sick with a cold, and I couldn't breath very well so we went to see a really nice doctor.  He told M&D that we all needed to go visit the hospital tonight to check out my breathing.  Well, once we got to the hospital, all the doctors decided that the baby things I was doing (arching my back, legs shaking when they move) were not normal.  They had a lot of people looking at me and decided that I had Sandifer's syndrome (which means extremely bad reflux).  Little did they know… I was tricking them, it wasn't Sandifer's at all.  After daddy begged them for days to take a picture of my brain, they finally did.  When the doctors told us what was on the picture, my entire life changed.  I have an extremely small Cerebellum as well as a small brain stem. What this means?

Fast forward a couple months.  We have been to lots and lots of doctors trying to figure out exactly what is wrong.  I have been poked with needles more times than you can imagine.  They took blood for lots of different tests.  Finally the doctors were able to diagnose me with a rare genetic disorder called Pontocerebellar hypoplasia - Type 2.  This diagnosis was very hard for everyone to take.  It means that I will be going back to live with my angel friends far sooner that anyone would like.  It also means that I will probably never accomplish the basic milestones of sitting up, crawling, talking, walking, or have much cognitive development. (of course, I can still blog though)  I have been told that I would amaze the people around me, so I plan on accomplishing some of those things that most PCH babies never do.


Mommy and Daddy are trying really hard to have as much fun as possible with me while we can.  Some of the things I really like to do are: catch some rays in the sun, listen to mommy play piano or daddy play guitar and accordion, hang out with my cousins, watch sports with daddy, listen to mommy sing songs, and listen to daddy tell Strawberry Jones stories.  When I'm not doing any of these things I'm usually visiting a doctor or sleeping.  I like the motto, and mommy and daddy try their hardest to follow it; "live everyday like it may be your last".  Although I don't plan on leaving anytime soon, I think I need to seize every opportunity that comes before me.

I would really like to see the world, but due to my limited time here, as well as the difficulty of me traveling I don't think I will personally see very much.  I'm hoping that everyone I know will take me with them "on their heart" when they travel.  If you would like to learn more about how to take me along with you click here.