Saturday, August 14, 2010

So many questions.

I have so many unanswered questions. With all that I have learned in the last 21 months of Haleigh's life, I still have many many questions. Some about her and some about the care she has received and will receive.

There are so many choices you make for your child before they are old enough to make them for themself. How do you know you are making the right ones? How do you know this is what they would choose for themself if they could? Do all parents feel that way? It starts from the moment they are born, even the choice of what to feed them, I have always wondered, "if I asked my kid what would they want?"

  With Haleigh's whole life there has been so many choices to    make, Not only with her Nevus but also with her overall health. 

Of course they can not answer you, so you do the best you can with the information that is set infront of you and pray that when they get older they don't hate you too bad for the choices you made for them.

My perfectly Brestfeeding baby, who could not gain an ounce of weight for weeks at a time, we finnally figured out was MSPI and reflux. We had doctor appointments for months just to find a reson for that, doctors ran every test there is on her and I felt so bad putting her through that.

I feel the same with the surgeries, now that they feel more real. I am thinking, Haleigh is so perfect. I made her just the way she is, I do not want the surgeries to change who Haleigh is.

I just want to give her the chances she will not get if we were to leave the nevus as it is now. I know all surgeries have their own set of risk.

I know that there will be physical pain with these surgeries, but even with that I can not get the word Cancer out of my head. Even since the 1st doctor said she was more at risk that other people for being born with the nevus, I have thought Haleigh is our 1% baby. And even if the risk is only going up by 1% that is too much. Well her chance of getting cancer vs. everyone that is not born with the nevus is 400%. Every person has between 0.5% and 1% chance of having skin cancer sometime in their life time. Haleigh has somewhere between a 5% and 20% chance (depending on who you talk to) of getting cancer by the time she is 13 years old. Haleigh does not do good when it comes to %'s like that. Here is some of the 1% of babies she is in.

1. 1% of babies are born with a true knot in their cord.
2. 1% of babies are born with a large/giant nevus.
3. Of the 1% that are born with the large nevi, 1% of thoes babies have them on their faces.
4. 1% of babies need the MSPI formula that Haleigh needed.
5. Of the 1% that need the MSPI formula 1% of thoes go on to need it after their 1st birthday.

With all those things I do not feel good about her cancer risk. It does not feel safe for her.

Other questions that come to mind are more about the foundations.
I never thought I would get a "yes" from one with out getting "no" from the others. I thought I would get "no" until I got a "yes". I never thought I would get a yes 1st.

What happens if I get a yes from someone else too? How will I choose where to go? I still have not heard from anyone else yet. The 1st thing I know I will do is call Dr. Connors and ask him what I should do. How long he thinks it would be. I mean if I got a call from Fresh Start saying they wanted to see Haleigh next month that would be really hard to turn down. Even though it is in Cali. I feel like I am doing the right thing going to Alanta. It feels right going through Emergence, and like Jason said, they were the 1st ones to call and want to help Haleigh.

I also believe Haleigh was ment to help that foundation too. Help them get grants for other kids. BUT saying no to quicker care would be a hard thing to do. Then there is Octorber. We have an appointment with dermo, to beg for her to send us to the facial plastics there so out insurance will cover it. Do I go, or do I put all my trust and Faith in Alanta???

No one ever told me being a mom would be this hard. I never thought when I became a mom 12 years ago that I would be making these choices for my child.

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