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Update on Harper and Port Wine Stain


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  #1  
June 13th, 2012, 07:37 AM
HippieLove's Avatar Modern Day Brady Bunch
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Firstly, Harper and I were transferred today to a town 2 hours closer to home Because she is stable and doing soooo well, we were able to be transferred to a lower grade hospital, which is fantastic. Its our first big step to going to the hospital in our hometown Which hopefully will be within 1-2 weeks Her cot temp was dropped again to just under 32C (31.9C I think). Her feeds are 33mls 3 hourly, and she tolerates them perfectly. She's had no more bradycardia/apnea episodes.

Port Wine.. So I don't know if anyone has noticed or not in her pics, but Harper has what the Peads believe is Port wine on her right arm... going from her hand to her chest They have taken photos and sent them off to the specialist at the Royal childrens, whom have said they don't believe its connected to anything serious, but she will have scans on her kidneys and brain just incase..

Anyway I guess I was just wondering if anyone else has this or knows someone? Its supposed to be genetic but nobody in my family or her fathers have it?

You can see it in this pic
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  #2  
June 13th, 2012, 09:39 AM
Mega Super Mommy
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My brother had the port wine stain from his fingers to his elbow (ish) but his went away before he was 1. I am glad they are keeping an eye on it just in case it is linked to anything, but it wasn't for my brother.
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  #3  
June 13th, 2012, 10:45 AM
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aww she's beautiful! my bf's sister had one over about1/3 of her face. It wasn't connected to anything. She had it lasered off when she got older.
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  #4  
June 13th, 2012, 11:14 AM
mommy2lilmen's Avatar Mega Super Mommy
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Location: Delta, BC Canada
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So glad she is doing well and you got transfered. Im not help when it comes to the Port Wine.. but I do still think she is adorable in her pics, love her hair.
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Mommy to 7 boys and 1 girl!
Sean 19, Justin 16, Kevin 14, Jayson 13, Bryce 7, Seth 6, Kade 4 & Alyssa 3
4 babies 94,95,99, 08~TL April 2003 & Sept 2013 TR May 2008

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Blessed with 1 son with Autism and 1 daughter with Down Syndrome child she was also born with Pulmonary Hypertension, Oxygen dependence, complete AVSD, Hirschsprungs, GJ tube dependant and many more health issues
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  #5  
June 13th, 2012, 12:13 PM
ashj_1218's Avatar Hiya!
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I am just a lurker...but my son had a big port wine on the back of his head. He had a CAT scan and MRI as an infant to make sure the major structures of his brain and abdomen were present and properly formed. Apparently having large port wine stains without a genetic connection CAN be related to problems in development of those particular areas. I honestly was in such a fog when all this was being relayed to me with my son, I dont remember what else they were looking for (if anything). But they did say that it is often NOT the case...but especially with port wines on the face and head do they do checks.

So it's better to be safe rather than sorry. Hers is probably just a randomness of genetics. My sons was. It is now covered with hair, but has faded dramatically. I have to look closely on his scalp to find it under his dark hair. The doc said most of them fade, but some more than others.

Shes so pretty! Congrats and I hope she continues to make strides and gets to come home soon
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  #6  
June 13th, 2012, 01:39 PM
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She's a doll!!!!
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  #7  
June 14th, 2012, 07:20 AM
LadyBugMommyof1's Avatar Platinum Supermommy
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She is beautiful Emma!

One of my nephews has a very large port wine birthmark over his shoulder and extending down his arm to his hand and fingers...it got darker and more pronounced his first 6 months and now that he is 3, it has pretty much faded, but still visible. Their pediatric dermatologists have said that it'll hopefully fade more by age 4-5 and by 5 what hasn't faded can be lasered off pretty completely. At least long sleeves cover it!!!
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  #8  
June 14th, 2012, 07:44 AM
HippieLove's Avatar Modern Day Brady Bunch
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Thank you so much ladies, its good to hear others experience and to hear that medically they are fine
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  #9  
June 14th, 2012, 07:56 AM
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Harper is so beautiful and i am so glad she is doing well enough to be transferred!
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  #10  
September 7th, 2012, 12:15 PM
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Quote:
Originally Posted by LadyBugMommyof1 View Post
She is beautiful Emma!

One of my nephews has a very large port wine birthmark over his shoulder and extending down his arm to his hand and fingers...it got darker and more pronounced his first 6 months and now that he is 3, it has pretty much faded, but still visible. Their pediatric dermatologists have said that it'll hopefully fade more by age 4-5 and by 5 what hasn't faded can be lasered off pretty completely. At least long sleeves cover it!!!
Hello,i read your post about your nephews PWS and it sounds like it is in the same area like my doughter PWS,my little one is 4 weeks old and am veryy concerned about her PWS,doctors says me to wait,peoples says me it will fade by time,everywhere where i googled i read that PWS do not fade with time,so im reding your post and its gives me a little hope,so pls can you tell me about your nephew PWS how much it was faded,i really wouLd like to be in contact with reall cases cos in my town nowon knows and hears about PWS,i really like to hear about true stories with PWS.
Al the best for you and your family.
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