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  #1  
Old 11-17-2010, 02:52 AM
WorriedFather WorriedFather is offline
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Dear All,
Our daughter was born back in March with a PWS covering her fight cheek, nose, upper lip and eye lid. Looking back, I was doing everything I could to find out more information about what it meant and the possible other associated conditions with PWS. I was frantic, worried, didnt want to be judged by other and spent hours and hours reading articles, following forums and comparing every situation against ours .

Eight months down the road, I have gained better perspective. I wanted to get back on this forum and tell everyone out there not to worry. Life gets easier, it becomes part of your everyday routine and you just learn to handle it. In the beginning, I worried what people would say, I always was looking around to see who was staring out our daughter.
Ella has had a total of three treatments. Two were without anathesia and today she had her first under general anathesia. Both are hard and today I shed some tears as they put Ella to sleep.
I just want you all to know where ever you are that you will learn to deal with it and have inner strength for your child. The treatments, the bruising and the questions have all become part of our life and it does get easier. One mother today in the waiting room was talking about people always questioning them about their son's PWS. She had a great take on it-
"its just one moment in time"

We are hopeful that Ella's PWS will continue to lighten and her treatments will become less frequent. As a worried father, 8 months ago- everything gets easier and at the end of the day, when the door is closed to your house or where ever you live, all that matters is the love and support you have for your family.

Worried father no longer
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  #2  
Old 11-17-2010, 10:52 AM
missy missy is offline
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Hi Worried Father!

Many of us get to the place you are today. It's not at all the same thing, but I remember when my son was diagnosed with autism... I went through all the stages of grief. It takes some time to get to the last step, but it's a wonderful place to be. I realized that, while my child was different, he fit in with us wonderfully.

That last stage is acceptance! Welcome!!

Glad Ella is doing so well. It's great to hear!

Remember to come back and give us updates on Ella... especially great ones like this!

Missy
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  #3  
Old 11-17-2010, 03:14 PM
abatie abatie is offline
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Congratulations on your stage of acceptance. I to have been going through this during the last year and a half. We have went through it in waves because we would deal with one diagnosis and then we would get another diagnosis. Keep up the positive attitude as it will help your daughter greatly!
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Old 11-20-2010, 09:46 AM
teardrop2 teardrop2 is offline
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THANK YOU NO MORE WORRIED FATHER!!! Your words have incouraged me alot. My son is 4 months old, with similar pws on left side.

I think I am on this road too....just one thing is, that doesnt help me find peace, and that is, the unchangable fact that our child will be able to start treatments only at the age of 2...I would much more like to start earlier, cause I do believe in the window of opportunity of earlly childhood, which our doctor doesnt.

All best to your daughter and your familly. The process you described is exactly the same I approched too...
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  #5  
Old 11-21-2010, 09:48 AM
cherrymom cherrymom is offline
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You have touched on the exact same worries I've had with my 2month old's pws (and possible kts). How will the regular treatments affect our lives? What will people say about his birthmark and how will they judge us and him? What further health issues may we encounter down the line?

I'm realizing that this negative thinking only prevents my family from moving forward. We do have the strength to deal with this, as with any other challenges we have encountered, and we have many amazing days to look forward to. Our baby is our joy and focussing on our family's love is a way better way to spend time than burying myself in Internet research. Thanks for reminding me of that!
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Old 11-21-2010, 02:41 PM
WorriedFather WorriedFather is offline
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Teardrop 2,

I am glad my email helped you. In regarding to your frustration about not being able to start treatments until your son is 2, I woud honestly look for an alternative doctor. Where do you live? Ella is 8 months and had a total of three treatments, two in the surgery center and one under general anasthetic. It might be worth to get a second opinion.
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  #7  
Old 11-23-2010, 02:15 PM
teardrop2 teardrop2 is offline
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Quote:
Originally Posted by WorriedFather View Post
Teardrop 2,

I am glad my email helped you. In regarding to your frustration about not being able to start treatments until your son is 2, I woud honestly look for an alternative doctor. Where do you live? Ella is 8 months and had a total of three treatments, two in the surgery center and one under general anasthetic. It might be worth to get a second opinion.
Not worried father, I got "hundreds" of second opinions. As I am a natural and mother "fighter" I asked many experts....it is just our insurance sistem, that doesnt break us through....I will probably give the application, but I was told in advance that probably our request will be stuck, as our doctor, where our son is, said that he is the one in the comitee for the deciding, and he will give his opinion, that the child has the chance for quality treatments at the age of 2. Before that age, his opinion is that the genereal anestesia is too risky...He will insist on that, no matter if we have different opinion.

This makes me from teardrop2 - to frustrated teardrop....
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  #8  
Old 11-23-2010, 02:17 PM
teardrop2 teardrop2 is offline
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Quote:
Originally Posted by cherrymom View Post
You have touched on the exact same worries I've had with my 2month old's pws (and possible kts). How will the regular treatments affect our lives? What will people say about his birthmark and how will they judge us and him? What further health issues may we encounter down the line?

I'm realizing that this negative thinking only prevents my family from moving forward. We do have the strength to deal with this, as with any other challenges we have encountered, and we have many amazing days to look forward to. Our baby is our joy and focussing on our family's love is a way better way to spend time than burying myself in Internet research. Thanks for reminding me of that!
The same from me - also thenks for reminding me that, though many of my true friends tried to help me see that, I am too often stuck in internet researches, and forgetting live passing by...
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