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#13388 - 02/01/07 02:10 AM Re: Roll Call!!
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
ShanTed1
If you know everyone is going to slam you why do you even say anything negative about them? With my 3rd child which has x-linked he was a total surprise.What would you say to me knowing I had my tubes tied and I still had a baby ? So no matter what if God wants you to have a baby hes going to give you one.And now im greatful he gave me Jordan cause my older son has someone that knows how he feels and there not alone.They help each other with lotions and they lean on each other.So I think you need to rethink about having another child instead of adopting.If you have another child with ichthyosis you know it was meant to be.And if you did'nt then that was meant to be also.Least my boys dont have to grow up alone woundering why they are the only ones that have this skin condition.They can always look at each other and realize they have each other.So think about if you want your child growing up and making him feel like hes alone.Have another child and leave it in God's hand.I can see if this was a life threating disease.

[This message has been edited by skittles71 (edited January 31, 2007).]

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#13389 - 02/01/07 02:22 AM Re: Roll Call!!
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
ShanTed, your reply is completely uncalled for in this thread. Everyone has to make their own decisions about family planning, and your lack of support is appalling. For one, everyone has different odds of passing things on, and two, everyone here has different severities to cope with. And three, I, too have a child from an unplanned and actively prevented pregnancy. Would you prefer to slam me over my choice not to abort Elliot? Thanks. Move along.

Jennifer
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#13390 - 02/01/07 01:20 PM Re: Roll Call!!
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
We are also having a baby in the very near future(7 weeks). And I will say that this baby was actively planned, even knowing the risk of having another affected boy. My husband and I looked at all of our options and decided that we would take our chances. We love our son and I wouldn't trade him for the world, and if we had ended up having another affected child we would have loved him just as much. We still do not know if our daughter is a carrier, but that wouldn't change our decision. We do not feel that the xli and our sons other disorder(Kallmans) is impacting his life in a negative way. He is a very happy and healthy two year old.

Heather
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#13391 - 02/01/07 01:46 PM Re: Roll Call!!
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Okay folks...
It is very clear to me that Shanted obviously enjoys getting our feathers ruffled. Every single post from this individual includes some sort of a slam or a low blow. Their sole existence here is simply to upset everyone else. I strongly advise that we reply to the posts from the other members and 100% ignore any posts from Shanted unless he/she learns how to "play" with the rest of the group. This person is obviously disturbed and I honestly think that we are feeding this sick game of his/hers with our responses.
I don't need to prove that I am a good mother by replying to the low blows. I know I am a fantastic mother. I have come to realize that this person can't come to terms with his/her own life and can't stand how comfortable we all are with the way our lives are. I am not even certain that this person has a child with Ichthyosis or is who he/she says they are. Please, rather than get frustrated, just ignore! This board is normally a very happy, peaceful, helpful group. There is no reason to allow all of this negativity to change that. I will be ignoring and moving on and I do hope the rest of you choose that option as well.
My very best to all of you!
Lisa
_________________________

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#13392 - 02/01/07 02:35 PM Re: Roll Call!!
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
Sorry Lisa, I tried, but my fingers just kept typing anyway!

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#13393 - 02/01/07 03:08 PM Re: Roll Call!!
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
LOL LOL LOL!!!
_________________________

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#13394 - 02/01/07 03:14 PM Re: Roll Call!!
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Better Late than never...

Kimberly & Mark parents of Sophia, Harrison and Evan
18 month old Evan has palmar plantar EHK

Evan has been making wonderful strides since Thanksgiving, literally. He started walking. His team of "ists" (speech, OT, PT, derm, ped) are happy with his progress and he seems much more content with his new found independence. He's in the 30th percentile for height and 5th for weight. I do not have any current photos or I would post them. His skin is well his skin. It is thick, blistered and often painful, but to everyone's awe, he continues to shine. We are going to sign him up for a toddler gymnastics/movement class this spring.

Mom and Dad are doing OK to good on most days. Having a child with special health needs can really take it out of you. He doesn't sleep well and EHK aside, Evan has a strong personality (don't most toddlers??!!). EHK has simply become part of the family routine, just get it all done and get on with the day. I have begun working more which has been wonderful for me. I am a freelance food writer/recipe developer and getting back into the kitchen has been so excellent, plus the little bit of extra money is great too!


What's one tip on skincare you would recommend that people DIDN'T try that you have? Evan's routine is pretty basic. We haven't varied all that much. Aquaphor on hands, feet and face. Lotion everywhere else.

What's one tip you'd definately recommend for skincare? We still medicate Evan during his morning "treatment." This is atypical with ichthyosis but it has worked famously in this family. Bleach in the daily bath water and socks over his hands to let the aquaphor soak in.

We have two favorite new items in the household: a set of aquadrums that float in the bath tub. I'd suggets googling aqua drums to find some and basic brilliance cotton clothes (www.basicbrilliance.com). This company makes 100% long sleeve onsies with no snaps and cut toddler caps. They come in fun bright colors. Prices are not over the top but they are not cheap either.

I love this board and our community. It gives me comfort, hope, support and strength.

Have a wonderful day everyone!
Kimberly

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#13395 - 02/01/07 03:20 PM Re: Roll Call!!
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
With regard to babies,

I once heard a mother of a child with an extreme genetic condition (non-ich) explain why she and her husband decided to have more children. She said "if the new baby is born with "(I forget the condition)", we already know how to care for it and our first child will have an extra special bond with her sibling. If the new baby is born healthy, that's fine too."

I found this very touching and very profound.

Building a family is a personal and private decision. Shame on those who feel so righteous that they can pass judgment.


Ciao.
Kimberly

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#13396 - 02/01/07 05:53 PM Re: Roll Call!!
Ellamay Offline
Member

Registered: 10/23/06
Posts: 34
Loc: Bagshot, Surrey, England, Uk
Your name: Liz

Your child(ren's)'s name:Ellamay 2yrs

What type of ich. (if any):?CIE?

Age:2yrs 1 month

Any updates on them you want to share?:

Ellamay is doing very well her skin is very good at the moment. she is a very normal 2 yr old and has just hit the terrible 2's with a vengence!

We are attending the Ichthyosis support Group's 10 yr anniversary in London in march it sounds fantastic with lots of professional speekers, pharmacutical samples and loads of mums dads and adults with Ichthyosis to chat too!

Ellamay regularly attends Great Ormond St Hospital for dermatology appointments and currently for ear probs ie too much wax and skin build up. We use Sweet almond oil and oilatum in the bath, cetraben emolient to wash and epaderm after each bath, 2 baths a day.

Ellamay has just started pre school she hates being dropped off and hates having to leave!

How's mom (or dad!) doing?:

Mum is very stressed due to being the main reciever of the terrible 2's mostly in the form of being smacked and kicked when Ellamay can't get her own way (we are both very determined and neither of us give in, me & Ellamay that is). If anyone has any tips or ideas it would be much appreciated.


What's one tip on skincare you would recommend that people DIDN'T try that you have? none

What's one tip you'd definately recommend for skincare?

Epaderm it is fantastic and would assume it would work just as well for more severe forms of ichthyosis.

Glad to see MOST of you remain supportive of each other, continue the great work you are all achieving!

Liz

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#13397 - 02/02/07 04:48 AM Re: Roll Call!!
atwoodclan Offline
Member

Registered: 09/11/06
Posts: 19
Loc: TX USA
Your name:Michelle
Your child(ren's)'s name:
Rebecca(almost 14), Andrew 10 1/2, Nathan 8, Katelyn almost 5, and Alex 5 mos on 2/3.
What type of ich. (if any): Alex has CIE-NB
Age: 5 mos
Any updates on them you want to share?:
Alex has been to both the pediatric opthamologist and pediatric orthopedic in Jan and is diung great. Also went to the geneticist and decided not to test at this time as we already knew it was spontanous as I have 4 non-ich kids & no family history of it.

Alex held up his head laying on his tummy tonight. Also started picking up toys next to him & puttung them in his mouth [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
How's mom (or dad!) doing?:

Hanging in there. Tired with all that is going on.

What's one tip on skincare you would recommend that people DIDN'T try that you have? Check prodcuts for Citric acid. We found this made our skin bleed in the hospital. A nurse used awipe on him bottom. It bleed. My other kids had citric acide allergies

What's one tip you'd definately recommend for skincare?
We have had great luck with the Johnson's Naturals head and toe wash. Plus the lotion-we use it on his head for now. Will have to switch once his hair comes in more.
It has olive oil, vitamin e & aloe which works better for us than Ceptapil which was drying out his skin for some reason.



[This message has been edited by atwoodclan (edited February 01, 2007).]

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