Thursday, February 4, 2010

Another hard visit

We were at Children's medical center bright and early for Molly's MRI. She was not happy at all with being bound up and the loud noise of the test. I was very hopeful as we finished the test and I could see some of the images on the computer screen. I knew from looking at her prior test that this one was better. The shunt was working and there was more brain tissue. We left the hospital to kill some time before our appointment with the neurosurgeon (he would read the scan before we would see him). I was so sure that we had made a major turn for the better and he was going to give us great news.

When we arrived to see him, he was not filled with good news. He had always been our very upbeat doctor, but not today. He came in quite serious and wanted to know how she was doing developmentally. I suddenly felt sick, realizing that this visit was already not going the way I wanted. He said that he had some good and bad news. The good news was that the ventricles are smaller, the shunt is working and that there is some brain regrowth. Then came the kick in the gut. The brain that was regrowing is very abnormal looking and the the fact that she is having seizures is a bad sign. He thinks that it was not what we originally thought it was that caused this, but some other issue that happened at a critical point in development. He is not sure if any of the regrowth that she will have will look normal and that the neurologist has the best picture of her future. I let him know that I don't like that outlook, and he returned to his kind disposition that we have seen before. He says that our neurologist is one of the best and is right most of the time, but not to lose hope - there are always those kids that really surprise us.

I know that there are miracles, and I am ready to see one! We love her no matter what. She is our angel and I know that God can work everything for good. I do wish that he would let us in on his plan. I am ready to hear from the burning bush or have one of those amazing experiences that we read about in the Bible. Until this past year, my path was always so clear. I did not have doubts on the direction that I should go. This year has been the hardest in our lives, but we will get through and we will get through together.

Thank you again for the calls and notes. It all matters.

3 comments:

  1. What can I comment? Heartbroken all over again. This wait and see is just torture. I'll call you later.

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  2. I just found your blog and will take some time catching up. I am so sorry you are having such a hard time. I only have a tiny bit of experience with this as they thought my son might have hydrocephalus. As of now he just has benign extra-axial fluid. Your family and your sweet little girl will be in my prayers.

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  3. Teresa, I pray for little Molly almost daily for strength for you and Kelly.
    Janet

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