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Letters

August 17, 2006

Hello.

I wanted to send out a "quick" email to give everyone an update regarding our meeting with the neurosurgeon today. It's so hard to repeat the information over and over so hopefully this will get everyone up to speed. And I haven't had much time to process it so bear with me.

First, let's start with the really good news of the day. Dirk is coming home on Saturday!! After 11 weeks we will finally be back in our space together which we are sooo excited about. Dirk has met his rehab goals and is now ready for home/outpatient therapies. Also, I think he is at a point where psychologically he needs to be in his own space. No more beeps and bumps in the night. Dirk will require 24 hour supervision for safety, but I am getting a wheelchair for him so he can tag along with me. Everything will take a little extra time, but it's worth it to have him by my side.

Our meeting went relatively well with the neurosurgeon today. We were so nervous about it because it felt like so much was riding on this meeting and what he had to say. It's so hard to stay calm and composed when your nerves and emotions are all over the place. I wanted to yell/cry and amazingly enough an inner strength appeared that I didn't even know existed- I think I have said that before..but really, where on earth does it come from? Maybe it's that I still feel like we are living in a dream (nightmare) and it will eventually end and we'll wake up.

So, it's hard to know where to begin. Dirk's malformation is relatively small - about the size of a pea. It is close to the surface, but there appears to be healthy brain tissue between the surface and the malformation. The site is located very close to the eye control center- the tectum. It is quite possible that in order to remove the malformation the tectum would be affected. This means that Dirk's eye movements could be affected. I have mentioned Dirk's eyes in many of my letters. They are slowly improving, but he continues to have double vision.

Surgery is an option for Dirk, but there are definite risks- mostly his eyes. As I understand it, it's not as though he won't be able to see, it's that he will possibly lose motor control. In a way, he had lost motor control after the stroke, but he is getting it back. The doctor is recommending that we wait 4 months and then get another MRI/MRA to get a clearer picture of the area, as well as allow Dirk more time to heal. It will allow the doctor to have a better idea of the risks involved. For example, if Dirk continues to not be able to look up and down it will be evident that the stroke caused damaged to this area of his brain and the surgery would not cause further risk to that particular area. However, if Dirk's eyes improve than we will know that if we have surgery Dirk risks losing the ability to look up and down (permanently or not I do not know.more questions for Dr. Lawton.)

As of right now, we want to have the surgery either way. Whether it's the stroke or the surgery causing the problem we understand the risk and we want to rid Dirk of this malformation. The risk of a re-bleed is between 1-10% per year. Dirk suffered a large bleed and I don't want us to wake up every day knowing there is a time bomb in his head. I explained to Dr. Lawton that we want to start a family and live life without having this hanging over us. How could I ever leave him alone? I told him I would have to get him one of those buttons to wear around his neck that automatically calls 911.

We still have a lot of questions to be answered. We need to find out if it will be safer to wait a few months before doing surgery or are we just waiting to see how well Dirk recovers and have a clearer picture of what we risk to lose with surgery. I think right now that as a family we have decided to have the surgery, it's just a matter of when. I don't have the answers, and as I said, we still have many questions, but it's a start in the right direction.

I will let you know how the big homecoming is and how Dirk adjusts to being home. As you can imagine, the cats and I are thrilled!

Thank you for your good thoughts and many prayers. Dirk deserves them because he is such a fighter.

Much love and appreciation, Kelsey.

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