A letter to Shalon

Shalon,

Gabi (3) just had her 15th treatment, we go about every 7-8 weeks because of how long it takes her to get back into her routine and feeling comfortable around everyone and it's just so hard with her VM on her face.  I know you understand.  Every time we see Dr. Yakes he will never tell us anything.  We have no idea how treatment is going other than when he calls us when she is in recovery to say everything went well and she's good.  What is that supposed to mean?  When does he let you know you are almost done?  How do you get answers out of him?      

Here's a random question, how many cc's of alcohol does he inject each treatment on you?  Does the alcohol burn through you skin and scar?  How do you feel afterwards? I don't know what to think, or do, or say to my 3 year old.  She has been doing these treatments since she was 8 months old!  Can you tell a difference, or a lessening of the malformation some how after treatments, or now?  Like to the touch it feels different, or the color is fading, or anything?  Is there anything that I can see to try and figure out how close we are to the end?  I HATE forcing my baby under anesthesia EVERY treamtment, she wont take versed to calm her, nothing, she just fights and it is killing me.  If I knew anything of progress I could keep doing it, but it is so hard when no one gives us any answers of any type.  Am I doing the right thing....I don't know.

Thanks,

Ashley

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Sometimes I just can't handle not knowing what next.  I feel like I want all the answers.  I wish I knew WHY?  How can I make it easier on her? What can I say to get an answer from some one?  AHHHHHHHHHH!  When will she be done? WHEN????