faerieprincess
on the threshold of revelation
- Joined
- Sep 10, 2008
- Messages
- 759
Hey yall!
im fairly new to the DIS, only been around about a month or so, but i so love reading TRs and PTRs that i decided to start one myself. Since we are leaving 100 days from today, it seemed like a good time to start!
We started the week with a mini-celebration: my sisters passport came in the mail! Whoot!
i guess before i go any further i should start by giving you some of the story of me and my sister.
Jess:
She was born when i was almost 11 about a month and a half after our mum married my stepdad. Her name is Jessie just Jessie. Usually, these days, she goes by Jess. ive had hundreds of nicknames for her over the years, but these days she generally gets J, Jessie James (Jessie J or JJ for short). She also answers to Jessiekins but not very willingly
Jess was born with a genetic condition generally referred to as CFND Cranial Frontal Nasal Dysplasia.
Here she is at about 10 months old (yes, thats me, and our heretofore unmentioned brother). Isnt she cute?
The cranial part comes from two of the four plates in her head being fused in utero. The other defects all have to do with the midline if you draw an imaginary line through the centre of your body (ie right between your eyes, through your nose, down your chest), most people have a very slight (VERY slight) difference between the two sides the smaller the difference, the more conventionally attractive someone is. There have been lots of studies on this; hopefully youll forgive me not citing them as its really not all that relevant. Most people are slightly asymmetrical. My sister is VERY asymmetrical. That line goes all through your body, so any organs on that line (for example the uterus) are oddly shaped as well.
Jess has had approximately 15 surgeries. Some of them were planned (sometimes years in advance) and some were emergencies (a bone graft growing out of control springs to mind!). She has had cranial reconstruction, dental surgery, surgery to adjust the muscles of her eyes all kinds of things. i have to say she is a real trooper. She takes everything as it comes and generally doesnt freak out too much over things like needles and IVs.
Along with the physical differences, Jess has a mild developmental delay. Now at 17 (she will be 18 in December), her emotional age is closer to 13 or 14. Shes definitely a teenager, with a whole lot of hormones and mood swings. If i was that bad as a teenager, i definitely owe my parents (and some of the neighbours
) an apology!
Despite having almost 18 years of explaining CFND i still dont feel im very good at it. My sister is beautiful to me.
So, in a nutshell:
Name: Jess
Age: 17 (but will be 18 when we get to WDW)
Occupation: student, finishing her last year of high school and planning for college
Enjoys: listening to her iPod, chatting on MSN and AbilityOnline, hanging out with her best friend, and fighting with her mother
Doesnt enjoy: being woken at stupid-thirty to go for walks with her big sister.
Next up: meet the big sister!
im fairly new to the DIS, only been around about a month or so, but i so love reading TRs and PTRs that i decided to start one myself. Since we are leaving 100 days from today, it seemed like a good time to start!
We started the week with a mini-celebration: my sisters passport came in the mail! Whoot!

i guess before i go any further i should start by giving you some of the story of me and my sister.
Jess:

She was born when i was almost 11 about a month and a half after our mum married my stepdad. Her name is Jessie just Jessie. Usually, these days, she goes by Jess. ive had hundreds of nicknames for her over the years, but these days she generally gets J, Jessie James (Jessie J or JJ for short). She also answers to Jessiekins but not very willingly

Jess was born with a genetic condition generally referred to as CFND Cranial Frontal Nasal Dysplasia.
Here she is at about 10 months old (yes, thats me, and our heretofore unmentioned brother). Isnt she cute?

The cranial part comes from two of the four plates in her head being fused in utero. The other defects all have to do with the midline if you draw an imaginary line through the centre of your body (ie right between your eyes, through your nose, down your chest), most people have a very slight (VERY slight) difference between the two sides the smaller the difference, the more conventionally attractive someone is. There have been lots of studies on this; hopefully youll forgive me not citing them as its really not all that relevant. Most people are slightly asymmetrical. My sister is VERY asymmetrical. That line goes all through your body, so any organs on that line (for example the uterus) are oddly shaped as well.


Jess has had approximately 15 surgeries. Some of them were planned (sometimes years in advance) and some were emergencies (a bone graft growing out of control springs to mind!). She has had cranial reconstruction, dental surgery, surgery to adjust the muscles of her eyes all kinds of things. i have to say she is a real trooper. She takes everything as it comes and generally doesnt freak out too much over things like needles and IVs.
Along with the physical differences, Jess has a mild developmental delay. Now at 17 (she will be 18 in December), her emotional age is closer to 13 or 14. Shes definitely a teenager, with a whole lot of hormones and mood swings. If i was that bad as a teenager, i definitely owe my parents (and some of the neighbours

Despite having almost 18 years of explaining CFND i still dont feel im very good at it. My sister is beautiful to me.

So, in a nutshell:
Name: Jess
Age: 17 (but will be 18 when we get to WDW)
Occupation: student, finishing her last year of high school and planning for college
Enjoys: listening to her iPod, chatting on MSN and AbilityOnline, hanging out with her best friend, and fighting with her mother
Doesnt enjoy: being woken at stupid-thirty to go for walks with her big sister.
Next up: meet the big sister!
