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#16803 - 02/19/06 01:19 AM Re: Pregnant
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Jennifer, in that case....How do you find this site...

can you email me the details please...

kimmy89@optusnet.com.au

thanks again

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#16804 - 02/21/06 04:05 PM Re: Pregnant
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
Jennifer,

Thanks so much for your reply. And yes, it is a very stressful situation to be put in. I feel it is important to have the prenatal testing -- yet part of me is so scared for the results. I so want a baby and yet, I don't want he/she to suffer what my daughter and myself have gone through. It isn't a simple or easy decision.

I totally understand what other parents have faced and I completely accept their decision(s) to continue a pregnancy knowing the struggles that child will face, and what the parents will endure as well.

[img]http://www.ichthyosis.com/ubb/frown.gif[/img]

Anyway, I will let you know of the results. Thank you for reaching out to me. There have been a wonderful few on this site that have really made me feel a wee sense of peace on what I'm going through.

Thank you again,

Jenny

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#16805 - 02/21/06 07:43 PM Re: Pregnant
victoria Offline
Member

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Quote:
Originally posted by jenjen:

I can't tell you how much I appreciate you asking me how I am doing. I am moved. It seems no one wants to chat with me because I am having the testing done and then deciding what I'm doing once I receive the results. I know it is a personal issue for everyone but I thought I might support on here but I guess I made everyone angry instead which was not my intent.
Thank you again for thinking of me.
Jenny


Hi Jenny, I am a mum of a 17 month old son with x linked ichthyosis and although I am fully aware of the different types and how bad they are to certain extents and realise EHK is a far worse type then x linked i felt moved to post here due to what you said above.
If by making the decision to get the testing done you made everyone angry then so be it, hopefully people will come to realise that it is different for everybody and that the testing is a very personal choice. At the end of the day what may be simple for them isnt necessarily for another. I have watched over the past 17 months and struggle with my little boy and getting to terms with his diagnosis (i had not even heard of ichthyosis beforehand). Newborn babys are not the easiest of people to communicate with at times and it is made harder when they are born with any kind of condition.
I have always said that I would never have any type of genetic testing if I were to fall pregnant again BUT i think that is mainly due to the fact the results would open up a whole new world of thinking to me and I would be scared of the answers. It takes a brave woman to face up to reality and do what you are doing, and as said above it is a hard choice. As a mum it is perfectly understandable to me why you would go for the test, no mother wants their child to go through suffering and as you have EHK yourself and have watched your daughter grow up with it , it makes it harder for you knowing what you may be going into.
You could draw strength from the fact that you and your daughter have grown up with it - but then I dont want to sound patronising either as I have not experienced EHK firsthand.
I really do wish you all the best and for now I offer my congratulations until you know what the future decides - I hope this board can be as good a help and supportive to you and you find as much comfort in friends here as I have since my sons diagnosis.
All the best - and i really hope you dont mind me posting here [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Vicky x

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#16806 - 02/21/06 11:05 PM Re: Pregnant
victoria Offline
Member

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Quote:
Originally posted by victoria:
Hi Jenny, I am a mum of a 17 month old son with x linked ichthyosis and although I am fully aware of the different types and how bad they are to certain extents and realise EHK is a far worse type then x linked i felt moved to post here due to what you said above.
If by making the decision to get the testing done you made everyone angry then so be it, and let them deal with that emotion you have enough to worry about as it is and hopefully people will come to realise that it is different for everybody and that the testing is a very personal choice.I am also sure there are great people here who WILL be very supportive. At the end of the day what may be simple for them isnt necessarily for another. I have watched over the past 17 months and struggle with my little boy and getting to terms with his diagnosis (i had not even heard of ichthyosis beforehand). Newborn babys are not the easiest of people to communicate with at times and it is made harder when they are born with any kind of condition.
I have always said that I would never have any type of genetic testing if I were to fall pregnant again BUT i think that is mainly due to the fact the results would open up a whole new world of thinking to me and I would be scared of the answers. It takes a brave woman to face up to reality and do what you are doing, and as said above it is a hard choice. As a mum it is perfectly understandable to me why you would go for the test, no mother wants their child to go through suffering and as you have EHK yourself and have watched your daughter grow up with it , it makes it harder for you knowing what you may be going into.
You could draw strength from the fact that you and your daughter have grown up with it - but then I dont want to sound patronising either as I have not experienced EHK firsthand.
I really do wish you all the best and for now I offer my congratulations until you know what the future decides - I hope this board can be as good a help and supportive to you and you find as much comfort in friends here as I have since my sons diagnosis.
All the best - and i really hope you dont mind me posting here [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Vicky x


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#16807 - 02/22/06 04:58 PM Re: Pregnant
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
Vicki,

Thank you!!!! Thank you for posting. I do feel brave at times but a coward as well. I am just trying to remain strong, take care of myself and the wee bean until we know all the facts.

Thank you for posting!!!

Warm Regards,

Jenny

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#16808 - 02/22/06 08:55 PM Re: Pregnant
victoria Offline
Member

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Quote:
Originally posted by jenjen:
Vicki,

Thank you!!!! Thank you for posting. I do feel brave at times but a coward as well. I am just trying to remain strong, take care of myself and the wee bean until we know all the facts.

Thank you for posting!!!

Warm Regards,

Jenny


Well I really do wish you all the best from my heart hun [img]http://www.ichthyosis.com/ubb/smile.gif[/img] Keep us updated on how things are going and remember dont let anyone stress you out its not good [img]http://www.ichthyosis.com/ubb/wink.gif[/img]
Vicky x

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#16809 - 03/06/06 06:57 AM Re: Pregnant
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Jenny,

I just wanted you to know that I'm wishing you well this Tuesday. Please let us know what happens.

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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#16810 - 03/15/06 07:18 PM Re: Pregnant
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
Hi Everyone,

Just a quick update since everyone has been so so supportive of my journey right now.

I had the cvs test on Thursday the 9th. Everything went fine, no major complications and all the samples went off to their respective labs.

My genetic counselor called today to that me know she talked to Dr. Sherri Bale at GeneDX and they have received everything and are working on the results.

Dr. Bale told me the results should be ready in a couple of weeks and the other results for any chromosonal disorders (since I'm at that age) and the sex of the baby should be ready by Friday.

I will keep everyone updated as I learn the information. Thanks again for thinking of me.

Jenny

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#25188 - 09/24/09 03:25 PM Re: Pregnant [Re: jenjen]
KyliesMommmy Offline
Member

Registered: 01/12/09
Posts: 29
Loc: NY
...


Edited by KyliesMommmy (09/24/09 03:30 PM)

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