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  #11  
Old 03-03-2006, 12:36 AM
QCBirthmark
 
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Default Re: Knowing that your doing the right thing

Was that this Thursday or next thurday 3/9/06? Please do keep us posted.

Have a great day sugar!

Jeni
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  #12  
Old 03-03-2006, 09:57 PM
huntersmom
 
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Default Re: Knowing that your doing the right thing

It was this Thursday, March 2.* Things went well.* It took him longer to wake up after surgery, which really scared me, but he is fine.* Face is of course swollen and blackened.* I'm being hopeful.* One thing that did make harder this time is that right before leaving for surgery he looked in mirror and asked what was wrong with his face.* I was honest and explained that it was his birthmark and that we were on way to see Dr about.* Then this morning he looked again in mirror-this time with a more puzzled look and asked what had happened to his face.* I about cried, but I explained again that was his birthmark and asked if he didn't remember going yesterday to see Dr.* Then he told me his face needed to be washed and asked several times for me to wash it off.* I was really heart broken and trying not to show him I was.* I did wash face, but explained that wouldn't be able to remove.* It's sooooo hard now that he is aware of it, which of course has made me think more about the guilt that is going along with it.* Oh well, we just keep doing what we think is best.* Thanks for all the support and advice, it has helped.* I wish I would have started much sooner with posting.* *
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  #13  
Old 03-04-2006, 12:27 AM
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Default Re: Knowing that your doing the right thing

huntersmom:

Big hugs to you and your son. My grandson is 11 years old, and was a little over a year old when he started treatment. We always showed him his face in the mirror (after we got home and the GA effects were gone). We would say encouraging things and tell him how beautiful his face was - both before and after treatment. After the laser treatment, he started called his birthmark his "surgery face" and we made up a little song to sing. I know it sounds corny, but it really did work in his case. For the longest time, when people would ask "what happened to your face?" he would just say "oh that's just my surgery face". He was never upset by the way he looked and to this day he still has such a wonderful attitude about the birthmark and treatments. It really does break your heart, though, to see what they have to endure. Sometimes I think the kids are stronger than we are about the whole thing. Hang in there, and know that we are here for you and your son.

I'm with the Sturge-Weber Syndrome Community, which is a branch of the VBF. We have a support group with parents and individuals with SWS and PWS. If you ever want to talk, please let me know. Also, please keep us posted on how you and your son are doing.

All the best,
Glenda
http://swscommunity.org
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  #14  
Old 03-18-2006, 01:21 AM
QCBirthmark
 
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Default Re: Knowing that your doing the right thing

The only time Gabby has ever gotten upset was about 3 txs ago. She woke up from surgery and had to go to the bathroom, when she looked into the mirror she said thru tears, "Why isn't it gone?" I had to remind her what it looks like after the fact then of course she was okay. She gets so excited about going. We are going again next month, and she is excited once again. Honestly I wish we could have it done here locally but we can't afford it and our insurance won't pay for it. We both love Boston so all will be fine.

I am so glad the surgery went well and I hope he is doing fine now.
Jen
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  #15  
Old 03-18-2006, 03:20 PM
incognito75
 
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Default Re: Knowing that your doing the right thing

Hello.

I am a 31 year old female with a portwine stain. My parents never thought to remove it because they thought it would just go away as I got older but it didn't, it grew a bit actually. Mine's rather large and covers my neck and chin and it's purple-ish.

All I really wanted to say was, when your kids get older, they get wiser, so there's little chance that they will make you feel guilty. I didn't. My parents treated me with a bit of extra care, maybe to compensate for getting made fun of at school. This really helped my self-esteem although I never knew that as a kid. I got picked on, kids stared all the time, adults too, but I ahd a lot of support from my parents and friends. It was and sometimes is still a cause for my low self-esteem. But I wouldn't get rid of it. It's also served as a test of whether people were good people or not; good friends, good boyfriends, etc.

The only way I would get rid of it is if it became a health problem. I read that it can bleed and become cancerous. As I get older, I do notice those changes, and because of this I've begun to look into laser removal but it's so espensive and my health care doesnt cover it claiming it's cosmetic surgery. So, until it actualy begins to bleed, I have to keep it. I'd hate to wait that long. I'd like to prevent things from happening.

Does anyone know if there are places that will offer financial/scholarship assistance?

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  #16  
Old 03-18-2006, 09:44 PM
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Default Re: Knowing that your doing the right thing

incognito75 -Sorry I just noticed in your message that your insurance company won't cover treatment due to pws being a cosmetic issue. Hank already gave you some great advice on this matter, and your doctor should be able to help you with approval. Here's a link on the VBF website that might help, too - however, if you need any more help in this regard, let us know.
http://www.birthmark.org/insurance_claims.php

Glenda
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  #17  
Old 04-03-2006, 04:42 AM
mommy23
 
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Default Re: Knowing that your doing the right thing

Hi Hunter's Mom,

I just wanted to give you another perspective. I am a 35yo mommy with a PWS on my right leg from the knee to ankle. When I was growing up, my parents didn't think my BM was any big deal. I however, kept it covered as much as possible and even avoided some activities because of it. I am still self-conscious about it today, although I have a husband who couldn't care less, and three beautiful kiddos. I can tell you that if my child had a PWS I would do what I could to remove it. I know it is difficult for you, and I understand how your heart goes out to your child. Don't be hard on yourself, you are doing what you think is best, and doing it out of love.
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