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Old 01-24-2005, 06:01 PM
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Default To Gial-Chief Nerd's Sister

Hi Gail. I just wanted to see how you were doing. I remember how tough the first year can be.
I myself, went through such a period of guilt. I kept blaming myself. What did I do wrong? What could I have done differently? You spend nine months doing everything you were supposed to do. You eat right, you stop all "bad" habits if you have any. You feel gulity if you have that glass of soda. All the prenatal tests say everything is wonderful. You dream of that baby every night. Then when they are here, you have to deal with a Vascular issue. What makes it worse is that so many doctors are not fully educated about PWS and the medical issues. You still love that baby with every ounce of your being but you cry for the unknown and you cry for what they have to endure, laser treatments, eye doctor visits, tests, neuro visits.
I will tell you that the first year was the hardest. It does get easier. Now three years later, I still have my good days and my bad days. Every time I see her pws I get sad for a moment but NOT because of the cosmetic aspect-I get sad because of what it can represent-possible Glaucoma issues etc. Cosmetically, I can deal-- it is the unknown- the waiting is what is so hard for me.
I think that being in the medical field myself has made it easier in some ways and harder in other ways.However, that is just me.
Try to vent if you need to. Some people need to talk while others feel better not talking. Do what is right for you. There is no wrong or right. You know how much you love your baby and you are doing everything you can for him. That is what counts.
Learn and read all you can. Become a sponge and soak up all you can about Vascular Malformations. Then you will able to make informed decisions for your little one.
Best of luck and we are here if you need us.
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Old 01-24-2005, 09:04 PM
Gail G
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Default Re: To Gial-Chief Nerd's Sister

Thank you Thank you Thank you, I think there are some things that husbands, and even those who have grown up with SWS/PWS do not understand regarding how a new mom feels. You hit the nail right on the head talking about the whole 9 months and everything you do to try and assure a healthy baby. i wish i could just fast forward my life a year or two, i don't have the strength to get through all this right now, but i guess i will find it one day at a time.
Do you have pictures of your little one? When did you start laser tx, did you have success? How often were treatments?

thanks again for your great post, i only hope i can help someone the way you have with this simple post in a few years!
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Old 01-24-2005, 10:32 PM
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Default Re: To Gial-Chief Nerd's Sister

Hi Gail. You are very welcome. Believe me, you will find the strength. As Mothers we may not know it is in us, but we find the strength. You will find the strength. You may not know it is there but it will be there when you need it.I had to resolve myself to the fact that I have to work with the situations that I am given. Not really given a choice here.
I promise that you will find the strength deep within you somehow, that will allow you to help another parent in the future if you chose to do so. I never in a million years thought that I would be here trying to help other people. If you would have told me that 3 years ago, I would have laughed in your face-Who me? Help someone else? I cant even help myself. My how it can change. I promised ALexa in the hospital that something good and positive would come from this---- I guess this is one way that I have tried to keep my promise to her.
I will write you an email privately later on and answer all your questions......
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