However, this appointment was a more difficult meeting this time, as this is the first time we have not quite seen eye to eye with our trusted physician. It has left me in tears, confusion and worry. The thing is, I went into the appointment feeling this way and I was so hoping to leave with a calm stomach and less anxious thoughts. That did not happen.
Here's the thing: Dr. Zuker does not think it is necessary to remove what is in her hair because he has never heard of a nevus losing hair. At one point, he totally dismissed my concerns and kept on talking about what he wanted to do next (what is left around the eye). When I asked him again about our concern for hair loss in the future, I could tell he was a bit annoyed as I would not let it go and that this could mean his game plan will change. And I couldn't let it go because it is a very real possibility of her losing her hair! We also had no plans to remove what was in her hair.....until we came into contact with adult scalp nevus owners.
Nathan reminded me that he works at a children's hospital and so he may not be aware of adults with a scalp nevus due to the fact that he doesn't deal with adults. But we have seen with our own eyes, adults who have lost hair from their scalp nevus in their 20s.
Once Dr. Zuker saw that we wanted to seriously address what was in her hair, we could see him slowly getting used to the idea that his original game plan of just dealing with the eye could very well be changing. He mentioned that it would be a huge undertaking and a big job. By the end of the appointment, he had a plan for what was in her hair and he said "Let's go for it."
We will begin in the fall - yay!!!!! That leaves the summer wide open for swimming, camping and all the other wonderful outdoor activities we love to do! Dr. Zuker's secretary will call us in the next few months, once they know the O.R. schedule, with a date to insert two expanders in Keziah's head. Once we've expanded and removed, then we will deal with what is around her eye. This means rather than being done this summer with everything, it'll be another 1.5 years or so.
He was concerned that it will all take longer and may run into her starting school. I reassured him that if that means she misses a bit of kindergarten (no worries for this September as we were never going to send her to jk anyway), then so be it. It's not like I've never taught a 5 year old before :o)
So that is the game plan. You would think we are relieved and happy. Unfortunately, like I stated above, I left in tears and more confused than ever. It is not enjoyable to feel like your trusted surgeon is not on our side. Are we wrong? Is he, the older, wiser, more experienced, wrong?? It makes me question everything, whether we really should just leave it; whether to trust his disbelief of going bald; if I know for sure she would not go bald, we would just leave it. But we don't know!!! And because we've met others that have, I cannot get that worry out of my mind.
As Nathan says, we go ahead and then we don't have to worry about it later for her. That is true.
But you know what else I am struggling with? And this may seem silly (I'll probably think it is once I've writeen it all out and read it over), but I actually worry about what Dr. Zuker thinks. I worry about messing up what he wanted to do, about being a pushy mom, about bringing up things that are not "true" (in his eyes); about coming across that I think I know more than a well-known and respected doctor who specializes in this; and the people-pleaser that I am, it bothers me that I may have annoyed him. I don't want him annoyed at me.
Believe me, going ahead does not leave us with joyeous thoughts either. It's not like we are eager for more fills and surgeries. Last year's fills and surgeries are not far from our minds. We know it'll be very hard and difficult. And if we could, we would wish that we didn't even have to worry about all of this. But this is not the case. We do need to address it. And we do believe that while it may be a very difficult process in the fall, we would rather do it now when she is young, then worry for the next 20 years about hair loss for her. And I think (hope) that she will thank us when she is in her 20s, knowing that it is all done and she does not need to worry about having to deal with baldness and expanders at that time in her life.
Time for a few pictures of our day to Sick Kids.
All ready and happy to go! I woke her up that morning, telling her we need to get up because we have to get going. A sleepy "Whose house are we going to?" was asked. I then explained to her where we were going. She right away responded that she will want daddy with and that maybe we won't be able to see Dr. Zuker because he'll be busy seeing other kids :o).
One of the things she was most excited to see were the fish in a tall cylinder-like aquarium. She was disappointed that they were not there (the fish are fake.....) but that disappointment didn't last long as she quickly saw the computer:
And on the way home. Some things never change: happy, tired and with a blanket on the head!
I know a lot of people were thinking and praying for us yesterday. We thank you for that. We pray that we will continue to rely on God for wisdom. As difficult as this journey can be sometimes, it all pales in comparison to what Tim Bosma's family is going through (you can read more about that here). Right now we have put our own concerns aside and our prayers are filled for the Bosma family.
