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#10974 - 02/17/06 03:33 AM Re: Get to know each other?
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
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

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#10975 - 02/19/06 05:16 PM Re: Get to know each other?
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
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

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#10976 - 02/20/06 05:06 PM Re: Get to know each other?
graciesmom Offline
Member

Registered: 02/10/06
Posts: 155
Loc: orange park, florida,usa
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

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#10977 - 02/24/06 04:59 PM Re: Get to know each other?
hollie Offline
Member

Registered: 11/23/05
Posts: 31
Loc: Houston, TX
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

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#10978 - 02/25/06 02:54 AM Re: Get to know each other?
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
Hollie,
My 3 month old son, Jared has LI. If you ever pass through Austin, email and we could get together,
Tammy
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#10979 - 02/25/06 07:27 PM Re: Get to know each other?
hollie Offline
Member

Registered: 11/23/05
Posts: 31
Loc: Houston, TX
Tammy-
Definitely! We love the Austin area-would love to move to the area eventually. I was just in New Braunfels last weekend.

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#10980 - 03/07/06 08:44 PM Re: Get to know each other?
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
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.

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#10981 - 03/07/06 09:24 PM Re: Get to know each other?
Heather Freeman Offline
Member

Registered: 03/07/06
Posts: 7
Loc: Davenport Florida
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).]

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#10982 - 03/07/06 09:28 PM Re: Get to know each other?
Heather Freeman Offline
Member

Registered: 03/07/06
Posts: 7
Loc: Davenport Florida
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).]

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#10983 - 03/08/06 02:04 AM Re: Get to know each other?
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
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
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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