Get to know each other?

Posted by: CShell

Get to know each other? - 02/11/06 06:27 AM

I thought it would be cool to get to know each other better on here [img]http://www.ichthyosis.com/ubb/smile.gif[/img] You know, see what we all have in common besides ichthyosis. I rely on all of you so much for support and understanding, and I really feel like you're my friends, and would love to get to know everyone better!

Maybe write a paragraph about yourself?

OK, here we go, I'll start b/c no one else is on at the moment lol

My name is Courtney. I'll be 21 years old on the 27th of February (yay! lol). My husband's name is Dmitry, and he's in the Army (Arabic linguist). Julia (as you all know) has Netherton's syndrome, and is our only child, unless you count our Siberian Husky, Sasha. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I'm a Russian language major in college, about a semester away from my associates. When I graduate, I want to be a social worker. I'm a free-lance writer, and have been published both on and offline. I've written two books (yet to be published lol), and more poems and short-stories than I care to count. I'm not a cat person, b/c they make me sneeze. I have a bazillion allergies, including one really weird allergy to ALL fruit (yup...oranges, apples, bananas, pears, you name it). I'm a gigantic Beatles fan (in fact, Julia was named after one of their songs), and really only listen to 60s/70s music. We've lived all over the U.S., including Alaska, Texas, NJ (where I grew up) and now Cali. I love to travel [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I think the only states I haven't visited are Hawaii and Utah. I used to be a nanny, and am now a SAHM. My ultimate goal in life is to become a pastor.

Ok...your turn! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

[This message has been edited by CShell (edited February 11, 2006).]
Posted by: skittles71

Re: Get to know each other? - 02/11/06 03:30 PM

Hey my name is Kathy im 34 yrs old.My husband name is Jeff and hes 35.I have 3 kids 14,8,9 .I have 2 boys and 1 girl.And they are always keeping me busy.I was born and rasied here in North Carolina.Soon my older son Cameron will start baseball.I hope he makes it he loves that sport.Last year he did'nt make it cause his skin just would'nt let him.It was so cold that his skin would crack and bleed and could'nt give his best he had.But I told him not to give up.Both my boys has x-linked ichthyosis.Im a pre school teacher for now until March 13th cause on March 14th I start my nursing school.I was a nurse before I had kids but when I had my first son Cameron i had to stay home with him to take care of his skin.I really miss taking care of people and making them laugh and smile.In my spare time I like to be with friends and family.For hobbies I collect Lighthouses my living room is full of them.I have seen all the lighthouses on the OuterBanks.Well I cant think of anything else so I will go...lol Have a Blessed Day

[This message has been edited by skittles71 (edited February 11, 2006).]
Posted by: jds

Re: Get to know each other? - 02/11/06 06:34 PM

Hi. My name is Tammy. I am 31 years old and live in Austin, Texas. I have only lived in Texas (both the Houston and Austin area). I have left the state twice to go to Cancun, once to Georgia, and once to Virginia. Oh, how could I forget I went on my first trip with my husband Gordon (34) to San Francisco. Not well traveled, I must admit. I have one four year old son named Tanner and of course, my beautiful new little guy Jared (who is now 9 weeks old). How time flies.
I teach kindergarten at the moment, but I am looking into switching schools to be closer to the babysitter's house. I would be more than willing to teach first or second grade as well. We are very lucky to have a wonderful lady watching both of my boys. She loves them like her own grandchildren. She cares for Jared's skin just like I do and sometimes even better.
As far as free time goes, I have very little, but when I do I love to read, take pictures, scrapbook, and go to the movies. I am so far behind in my albulms though. Just finished my memorial day pictures from 2004. I am also taking a children's writing course from a school in Conneticut. Right now I have my class account frozen, but will continue again in the summer. The class helps you learn the magazine market, but ultimately I would love to write leveled readers (The books that you use when teaching children to read.). Who knows though. Life has a way of sometimes choosing your path for you. Many times a much pretty path than I may have choosen on my own.
My family too is not a cat family both my husband and Tanner have severe allergies to them. I on the other hand love cats. We do have two dogs. Quite the odd pair. A minpin named Tucker and a yellow lab named Brodie.
I tend to talk way to much as is evident with my post, so I will let you go for now. Thank you, Courtney for such a wonderful idea and by the way Julia is a sweetheart.
Posted by: LauraAnn

Re: Get to know each other? - 02/11/06 09:27 PM

Great idea.
It's been fun reading your posts, ladies.
My name is Laura, I'm 35. Married, to Tom, also 35. We have 4 kids, 2 girls, 2 boys, my girls are 12 and 10, my boys are 6 and 2. We live in the inner city of Chicago, the uptown area, six block west of Lake Michigan. My husband and I are inner city missionaires, we have lived here in this missionary community for almost 13 years. My husband is a full time high school teacher, here in our private school, and I am a SAHM, but also filling my time with various duties keeping our ministry going such as: cooking dinner once a week, coordinating parent rotations for school lunches, lay counseling women who struggle, discipling young married couples, and whatever other needs arise that we can be involved in. Some of these things my husband and I are involved in together. Hobbies? Well, I don't have much time for any....I had to put them all away when number 3 came along.....but I love to unwind with a good movie, book, or tv show. I love being a mom, most of all, and I love caring for kids, skin, allergies, and all [img]http://www.ichthyosis.com/ubb/smile.gif[/img]. No pets, we can't have them around, too many people in our building with allergies - well, we wouldn't be able to have them anyway, my husband and daughter are horribly allergic to animals, as well as horrid seasonal, and my girl has detergent/fragrance allergies and exercise induced asthma. My boys have seasonal allergies, eczema, and my 6 year old has a peanut/tree nut allergy, asthma, and a detergent/soap/fragrance allergy. Yep, it's a full time job caring for the kids [img]http://www.ichthyosis.com/ubb/smile.gif[/img]. It's not really as bad as it looks written out!



[This message has been edited by LauraAnn (edited February 11, 2006).]
Posted by: victoria

Re: Get to know each other? - 02/12/06 02:42 AM

well my name is vicky and i will be 26 this june, my partner is del and we have a little boy together who is 17 months and has x linked ichthyosis and i have jessica who is 7 years old.
We live in the uk but are considering moving to cyprus which is where dels dad has moved since we lost dels mum a few years ago.
I used to work full time as a bar maid but quit when i was carrying kian. I love animals although i keep no pets because of where i am living at the moment - although i used to have kittens [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img].
All my family love music and ya can always find one of us bopping around to the radio or a cd - and yup that includes bum shuffler kian as well [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]

[This message has been edited by victoria (edited February 11, 2006).]
Posted by: thehodgees

Re: Get to know each other? - 02/12/06 05:00 PM

Hello, Courtney, Erin, Kathy, Tammy, Laura and Vicky!
Thanks for the awesome idea, Courtney!
My name is Sarah (32) and I am mother to two...Matthew, 4, and Ema, 1 1/2. Ema was born with CIE...Matt was born with ENERGY!!! Let me tell you...CIE is easier to handle somedays!
I am a teacher (mostly Grade 6 and Phys. Ed). I will be on extended leave until Ema starts Junior Kindergarten (4 yrs. old). I love to scrapbook and have wrangled a job at a local store for one day a week. My mother claims to enjoy being with our kids once a week. Bless her!
My husband, Craig (36), is also a teacher. He is a Special Education/Learning Support Teacher so he does a lot of paper work and doesn't have his own classroom.
We live in Woodstock, Ontario. About 30,000. We lived in New Zealand for 4 years when we first got married in 1996. We couldn't find jobs in Canada. We have traveled A LOT...mostly before kids but we did travel to New Orleans, and the East Coast of Canada since having the kids.
We are HOPING to get to the conference this year. Unfortunately, a really good friend of our's is getting married July 1st. We told him that we are torn by our situation. We have to let him know this Thursday what we are doing.
Has anyone else noticed how many of us are teachers or have spouses that are teachers? Erin told me that her board has a lot of teachers with children with Ichthyosis. I wonder if anyone is tracking this?
Erin (BeepBeepinaJeep) purposed setting up an on-line chat...perhaps Wednesday nights - BEFORE Lost. My AIM name is thehodgees4
email is thehodgees@yahoo.ca
Ciao for now,
Again, thanks for the great idea, Courtney!
Sarah
Posted by: Francesca

Re: Get to know each other? - 02/14/06 11:42 AM

Hi, I am Francesca(37) and live in Brisbane, Australia ,(aka Brisvegas!)with my partner Tony(41). Last October we had our first child, Lucia Belle - she has Nethertons and is yet to come home from hospital, but is wrapping the nurses around her little finger as I write this! I hail from Kent, England and came to Oz via SE Asia in '93 as a backpacker in search of 'myself' and never left! Before the wanderlust I did a degree, worked in Africa & then worked in London. My family are all back in England or dotted around Europe. Tony is from cane-cutting Italian roots in North Queensland: we met on a grassy knoll at a summer music festival. I am on maternity leave (now extended)from a job as a 'brand manager' for a childrenswear company, while Tony works at the University of Queensland in telecommunications. We have a a very fluffy cat, Shaman, with attitude(what cat doesn't?) but can't agree on 'where' a dog should be allowed within the house....Love performance arts, outdoors activities and music from all areas - currently brushing up on nursery rhymes and story-telling talents!
Posted by: ShaunaJ

Re: Get to know each other? - 02/15/06 04:54 PM

This is a fun idea. I haven't been on for a bit and have missed a ton on the board. I see a ton of new names how cool. OK My name is Shauna I am 28 years old. I have 3 kids Alexis she is 9, Ryley is 7 she has Lamellar Ich, and Colton he just turned 3. My husband is 33 his name is Mike. He is a computer geek and I wouldn't have it any other way. He is in school for Computer Programing, but wants to change it to web design. He is also a store manager for Doller Tree. I am self employed. My husband and I are mobile DJ's so we dj school dances, weddings, parties, bowling allies, ect. We do travel a bit with this job. I also sale jewelry and that is a fun job for me because I love jewelry. I have lived in Colorado and Utah but that is it. My favorite place to visit is Seattle. My favortie color is purple. I love to read, write, take pictures, scrapbook, and bake. I have written tons of poems and won a few contests with them nothing major though. We have two dogs a papillion named Snickers, and a toy poodle named Dudley. I can't think of much more right now. This was a great idea I loved reading everybodies posts.

Shauna
Posted by: Laurensmom

Re: Get to know each other? - 02/15/06 08:18 PM

I love this idea. My name is Shannon. I am 40 (yikes) years old and seem to be in the older but inexperienced mom category. Courtney, we share a birthday (February 27th). My husband John (42) and Lauren (21months) complete our little family. We got a bit of a late start.
Lauren's genetic work-up recently confirmed her Harlequin diagnosis and we are amazed daily on her perserverence and determination.
I am originally from Traverse City, Michigan and attended Central Michigan for both my bachelor and masters work. I moved to Massachusetts shortly after graduation and have been here ever since. John is a born and bread Bostonian with the accent to boot and the dedication to his beloved RedSox. We met 6 years ago and we will be celebrating our 5 wedding aniversary in April. I returned to work part time as an audiologist at Childrens Hospital in Boston when Lauren was 9 months old and we were confident the scary time was past us. John works in route/sales for a local spring water company.
Neither one of us have family in the area and some how your postings help connect us to a bigger family. I would love to hear from any or all of you and would welcome emails at MShan1218@aol.com
Thank you Courtney for getting us all together.

Shannon Hamill
Posted by: CShell

Re: Get to know each other? - 02/16/06 05:23 AM

Wow! I'm so glad so many of you ladies participated in this! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] This board has been a God send, and I really wouldn't know what to do without you all!

I loved reading all of your responses, it makes everything more well-rounded...like, makes you seem like actual people, if that makes any sense lol

Beepbeep, I always think of that song whenever I read your posts lol You know, "Who's got the keys to the jeep, beep beep!" [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I almost went to college in North Carolina, too, got accepted at UNC Charlotte, but ultimately decided to stick around NJ to stay with my husband.

Kathy, have you ever seen the lighthouses in NJ? I know they have some famous ones there, particularly the one in Cape May. My mom collects lighthouses, too, coincidentally. She has them displayed in this cabinet thing. We're beach people [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Tammy, wow! A teacher. I totally respect that. I worked for awhile as an aftercare teacher for first graders, and it was HARD WORK! Anyone who can do that full-time is a hero in my eyes! lol And I love your outlook - "Life has a way of sometimes choosing your path for you. Many times a much pretty path than I may have choosen on my own". It's so true.

LauraAnn, sounds like you have a full plate! 4 kids, wow, plus all their special needs! You must be an amazing person, I have a difficult enough time dealing with just one!

Victoria, you probably get this all the time when you talk to people from the U.S., but I love the way your words flow together! My friend spent a semester in London last year, and he became infatuated with the accents over there, and for months tried to mimic it, in New Jersey! lol He was a character.

Sarah, another teacher! I've noticed so much in common between all of us, even just little things - sort of underlines my thoughts that everything happens for a reason! Hope you get to come to the conference, it'll be my first time this year. And all your traveling - wow, I'm jealous!

And Francesca's another traveler! That's cool - I've always wanted to backpack around, and it's always been a dream of mine to visit Australia. Maybe one day I'll come visit lol Is Lucia gaining weight yet? Remember, whoever hits 10lbs first gets a rattle! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Shauna, my husband's a computer geek, too lol If he had his way, he'd sit and play World of Warcraft 24/7. And you are the first person I've ever come across who likes Seattle!! lol My husband and I stayed there two years ago on our way to Alaska (we drove from NJ to AK...quite a long trip!), and got horribly lost, and my hair was frizzy the entire time because it rained. [img]http://www.ichthyosis.com/ubb/frown.gif[/img]

Shannon, I'd done some research on Harlequin's while we were still researching Julia's condition. You must have an incredibly strong daughter, and you must be an exceptional mom! And I'll be sure to come on here next Monday to wish you a happy birthday! I will toast you with my first (legal) martini! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] lol

Keep em comin' ladies! I know there are more than 9 of us on here!! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Posted by: Evan's Mommy

Re: Get to know each other? - 02/17/06 03:33 AM

Hi All..

My name is Kimberly. I am the mom of a lttle babe with palmar plantar EHK. Evan is 7 1/2 months old now and we are still adjusting. I am offically tired of blisters!! My husband, Mark, and I have been married for ten years. We have a 7 1/2 year old daughter (Sophia) and a 5 year old son (Harrison) and the newest babe Evan. My husband is a postal employee who works the overnight shift and I am now a stay at home mom. Prior to Evan's arrival, I worked as a food writer and cooking instructor. I have co-authored two cookbooks. I visit these boards at least once a week to see if I can learn anything new or if I might be able to provide some insight. I try to be positive about Evan's skin and all of the care, but on most days it is difficult. Losing my income has made finances a challenge too. Evan's EHK was what they call a spontaneous mutation. I prefer to call it a genetic oops because mutation is too science fiction for me. We are lucky that we live close to Boston, where Evan can see a pediatric dermatologist when necessary. I feel especially lucky to have these boards and FIRST. I'd be soooo lost without them. I'd love to post some photos but I am technologically challenged. I hope to meet many of you at the conferance.

Ciao for now.
Kimberly
Posted by: libby

Re: Get to know each other? - 02/19/06 05:16 PM

Hi, my name is Olivia (nickname...Libby). I am 35 years old. My husband, Marty is 42. We have 3 duaghters. Claire 10 (CIE), Jane 9 (on March 18th), and Caroline 6. Would love to have a 4th, but my husband says NO!!

I am a SAHM and wouldn't change if for the world. We just recently moved to Millerton, NY where we are in the process of renovating/restoring the house that I grew up in. It is truly a labot of love. The house was built around the 1850's.

My hobbies include anything outside! We love to camp, hike, bike, swim, rollerblade, garden, etc. I also love to cook and READ! We have also started "game night" in our neighborhood. We are what you might call Cranium freaks!!

We have 2 pets Kira the dog and Lucky the cat. Lucky was abandoned by his mama, so we decided to give it a try and bring him up ourselves. What a great experience it was to watch this little tiny kitten grow into a massive cat that he is now!

We are a family without TV! Our dog tore out our cable line in our old house about 6 years ago and we never hooked it back up. What a difference it has made! The creative play that has emerged in all 3 of our kids is amazing. Every once in a while we do miss it (right now for instance...we haven't seen any of the Olympic games). But...I don't see us getting it hooked backed up in the future!

Well, this is certainly a good idea and I do love reading all of your posts. I wish I had more time to read more of them.

Libby
Posted by: graciesmom

Re: Get to know each other? - 02/20/06 05:06 PM

Hello! my name is Jennifer and I'm 29 years old. I'm originally from Marietta, Georgia. My husband is Derek and he just turned the big 30. Togetner we live in Jacksonville, Florida and have two beautiful daughters. Clare is 2 1/2 and Gracie (LI) is 5 months. I graduated from Seattle Pacific University with my bachelors in nursing. I worked as a operating room nurse for four years, which I loved. After the birth of our first dauaghter I decided to stop working and become a stay at home mom. I have to say there is nothing better than staying home with my two girls. I love being with them and watching them grow up, although they are growing up way too fast! My husband is a Naval Academy Graduate and is a Supply Officer in the Navy. Because of his profession, we get to move around a lot. We have lived in Washington state, Maryland, Georgia, and florida. We move about every two years, however, I'm hoping that we can stay here in Jacksonville longer. We love it here and even more importantly, we have established wonderful docters for Gracie and the weather seems to be good for her skin.
As for myself, I stay extremely busy with my girls! My 2 1/2 year old is a ball of energy and my baby seems to be following in her foot steps. We also have a Chocolate Lab named Maddie who is always doing something to get in trouble. When I do have time for myself I enjoy going to the gym, spending time with my friends, shopping, decorating my new house, reading, and cooking. I also just starting selling Kelly's Kids clothing, which is more fun than work.
I guess that's about it for me. I love this message board and feel very lucky to have all of you and FIRST for support and advice. This has been a life-saver for me. I plan on going to the convention this summer in Atlanta and look forward to meeting all of you.
Thanks Courtney for the Idea! It's been nice to here all about you and your families. Jennifer
Posted by: hollie

Re: Get to know each other? - 02/24/06 04:59 PM

I love reading about all of you! We rely so much on each other for support and advice about caring for our children that it feels only appropriate to share information about ourselves and our families.

My name is Hollie (31). My husband Luke (35) and I have been married for 6 years (dated for 5). We have two beautiful daughters, Erin and Kate. Erin just turned 3 years old last week and is a little livewire. She keeps me busy laughing and running after her every minute of the day. Kate is 9 months old and is a sweetie but also a pistol when she chooses to be. I love it! Mazey is our beloved golden retriever. They light up our life and we love being their mom and dad. I have lived in Houston since I was 5 years old- moved from Corpus Christi area. Luke was born in Houston and we grew up knowing a lot of the same people but never crossed paths until he had graduated from Texas Tech and had moved back home to find a job. It was love at first sight! I attended SFA for two years, returned home for a two year break from school, and finally graduated with a teaching degree from University of Houston. I taught first grade for 5 years. When Erin was born, I worked day as an English Second Language Specialist. I quit teaching when I got pregnant with Kate because I was offered a job to work from home part time. I plan to return to teaching when the girls are a little older. My husband works in the energy/gas business and has for about 8 years now. We love BBQing, having dance parties (sounds corny), and doing anything outdoors.

Thanks to all of you!

A few of our family pics to share-
http://ourbabykate.shutterfly.com
Posted by: jds

Re: Get to know each other? - 02/25/06 02:54 AM

Hollie,
My 3 month old son, Jared has LI. If you ever pass through Austin, email and we could get together,
Tammy
Posted by: hollie

Re: Get to know each other? - 02/25/06 07:27 PM

Tammy-
Definitely! We love the Austin area-would love to move to the area eventually. I was just in New Braunfels last weekend.
Posted by: shandra

Re: Get to know each other? - 03/07/06 08:44 PM

Its nice to read everything everyone has to say.
My name is Shandra (37) and my Husband is Juan (35). We have Dakota who is 6 months on the 15th this month. He is the one with Ichthyosis, we have a 9yr old son Nikolas and 20 yr old daughter Stefani. We live in Illinois. We love to travel and do a lot of it. Summer time we camp and white water raft all the time. We also do alot of boating,fishing, swimming and go riding.( it looks like we will have to change in what we do a little or buy a camper) Which my husband will love, he hates the sun, but can't escape it being married to me. We spend all of our time outside in the summer. Our 9yr old is in baseball so he keeps us very busy with that. For pets we have a lot of Fish, piranna's, oscars and a bunch of others at least a good 50 fish, We have a bearded dragon, leopard geckos. Our water dragon died awhile ago, and so did the iguana. We have a rottweiler her name is shadow and had a pitbull named spike. ( I got rid of him about a month ago). My husband and son were very upset with me for doing that. My husband is a driver and works fulltime. He actually is not suppose to work due to a accident at work. He had major surgery for it. He was off for 2 years and could not handle it anymore. I loved it tho, come home from work and all the cooking and cleaning was done.It was great. I have a company do fortunalty I can be flexible with my hours. But I do tend to stay at the office most of the day.
We live on top of a hill and have woods all around us, our back yard is always filled with deer along with coyotes and foxes, of course not at the same time. It is so quiet and relaxing.
Well I have rambled on enough. Hope to meet everyone at the conference.
Posted by: Heather Freeman

Re: Get to know each other? - 03/07/06 09:24 PM

Quote:
Originally posted by CShell:
I thought it would be cool to get to know each other better on here [img]http://www.ichthyosis.com/ubb/smile.gif[/img] You know, see what we all have in common besides ichthyosis. I rely on all of you so much for support and understanding, and I really feel like you're my friends, and would love to get to know everyone better!

Maybe write a paragraph about yourself?

OK, here we go, I'll start b/c no one else is on at the moment lol

My name is Courtney. I'll be 21 years old on the 27th of February (yay! lol). My husband's name is Dmitry, and he's in the Army (Arabic linguist). Julia (as you all know) has Netherton's syndrome, and is our only child, unless you count our Siberian Husky, Sasha. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I'm a Russian language major in college, about a semester away from my associates. When I graduate, I want to be a social worker. I'm a free-lance writer, and have been published both on and offline. I've written two books (yet to be published lol), and more poems and short-stories than I care to count. I'm not a cat person, b/c they make me sneeze. I have a bazillion allergies, including one really weird allergy to ALL fruit (yup...oranges, apples, bananas, pears, you name it). I'm a gigantic Beatles fan (in fact, Julia was named after one of their songs), and really only listen to 60s/70s music. We've lived all over the U.S., including Alaska, Texas, NJ (where I grew up) and now Cali. I love to travel [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I think the only states I haven't visited are Hawaii and Utah. I used to be a nanny, and am now a SAHM. My ultimate goal in life is to become a pastor.

Ok...your turn! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

[This message has been edited by CShell (edited February 11, 2006).]
Posted by: Heather Freeman

Re: Get to know each other? - 03/07/06 09:28 PM

Hello everyone. I was just wondering if anyone had any advice about scalp care and if so could please let me know,My daughter Madeline is 5 and has E.H.K Epidermolytic Hyperkeratosis the skin in her scalp is really thick i have tried olive oil but it blister's her forhead any type of oil based blister's her her hair ir so matted down its a pain to brush she crys if any one has any suggestions please let me know.

Thanks Heather


[This message has been edited by Heather Freeman (edited March 08, 2006).]
Posted by: jrmiss86

Re: Get to know each other? - 03/08/06 02:04 AM

Somehow I missed this when it was first posted or else I would have chimed in much earlier.

My name is Heather, my husband is Jason. I am 27(just this week even, March 3) and my husband is 34. Our son Alex just turned 1 last month. We live in Mount Laurel NJ, and we are hoping to move in the next few months to a bigger house. right now we are living in a 3 bedrooom townhouse. Although since my husband works from home, it is more like two bedrooms because one room is his office. I too used to be a teacher, although I must say I am much better suited to be a stay at home mom. I have never been happier than I have been this last year with my son. When I was teaching I tought preschool special education and worked in daycare for several years. My husband and I have been married for 2 1/2 years, some days it feels like it has been forever, in a good way that is. We also have a 2 year old dog named Jake. He is exactly 1 year and 1 day older than Alex. I am not sure exactly what we were thinking when we planned this, I would not reccomend having an infant and a puppy, especially in a small townhouse with no backyard.

I am the oldest of three children. My two younger brothers both have the same disorders that my son has, x-linked and kallmans syndrome. My family is in the medical record books because of the frequency of the occurance of Kallmans in our family.

Anywho I have babbled on enough
Have a nice day

Heather
Posted by: Heather Freeman

Re: Get to know each other? - 03/08/06 03:58 PM

Hello everyone !!! My nane is Heather my boyfriend's name is Brandon I have three children by my husband who i am no longer with. My son is 9 his name is Jacob my daughter is Erin she is 8 and Madeline who is 5 and she is the one with E.H.K. Epidermolytic Hyperkeratosis. My husband nor i have it or my oldest two children. We live in Florida and she does blister up quiet a bit from the heat. She thinks she is the only one who has this since she has never met any other children with this condition. We are going to try to get to Atlanta but we are in the process of moving to Orlando. We have a web page if anyone would like to see my family it's dropshots.com/bcarmer


Thank's for letting me share my life with you....
Heather
Posted by: CShell

Re: Get to know each other? - 03/09/06 02:50 PM

[QUOTE]We live in Mount Laurel NJ, and we are hoping to move in the next few months to a bigger house. [/QUOTE]

I grew up in NJ! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] Was born in Rahway, lived in Linden, and then moved to Cranford when I was in 9th grade (all in the Woodbridge/Colonia area). Don't know if you know any of those towns lol Mt. Laurel sounds familiar, maybe north of Cranford? Is it near Basking Ridge?
Posted by: jrmiss86

Re: Get to know each other? - 03/09/06 07:46 PM

those towns sound fammilar to me as well. We live in Burlington County. If I am correct those areas are all north Jersey. My husband works in NY three days a week or so, So I bet he knows, when he is done working i will ask him.
Posted by: lsteven

Re: Get to know each other? - 03/18/06 03:46 AM

Hi my name is Sarah, i'm 22. My husband John and I just had our fist child Zoey Belle. She is 2mths old and was originally diagnosed with Harlaquin.(God works miracles looks like she has less severe form)I was going to school for teaching focusing on special needs children. Before Zoey I was working at a Vet Hospital. I love animals! I am also into jewelry making and scrapbooking. Both of which it seems i have less and less time to spend doing. Thank you all so much for being so helpful, being a first time mom is scary enough without the icthyosis being an issue! You all are very supportive.
Posted by: Butterfly.1

Re: Get to know each other? - 03/18/06 10:45 PM

Hello everyone! What a great idea!!!!!

My name is Tania and I am from Toronto, Canada. I am 30 and my hubby is 32. We have been married for almost 5 yrs. We have a 5 months old baby girl, who is our first.

I do not have the actual diagnosis yet [img]http://www.ichthyosis.com/ubb/confused.gif[/img] (waiting to see the doc and hopefuly get some conclusive tests), but both my daughter and I seem to have IV. Since IV is a dominant trait, I assume she got it from me [img]http://www.ichthyosis.com/ubb/mad.gif[/img] and at times feel very guilty for passing it on to her (not that I have any control over it).

We do not have any pets, but we love animals. One of these days we will get our fish tanks running again and start fish breeding. It used to be a lot of fun (and cleaning lol)

My hubby is a computer geek too!!! Actually we both have Computer Sience degree, though I decided after a while that I don't like programming anymore and now hoping to get into Human Resources. I am half way done getting my post graduate certificate in HR (just hope I have time to take the rest of classes to complete it).

I never met anyone with IV and thought I was the only one suffering from it, but now thanks to www I realise that there are people who have it out there and hope to share our stories and things that worked for us.



[This message has been edited by Butterfly.1 (edited March 18, 2006).]
Posted by: thehodgees

Re: Get to know each other? - 03/20/06 01:54 AM

Tania,
We are practially neighbours!!! WOW!!!
Glad to meet you,
Sarah, Craig, Matt and Ema