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August 5, 2006

Hello.

This has been a long week.

Before I get into the medical issues I will give a rehab update on Dirk. Not surprisingly Dirk has continued to do well in rehab. He walked to Ross and back on the bike path, which is a little over a ¼ mile away with min assist to stand by assist. His balance is slowly improving, and fortunately his balance reactions are improving even faster. That means he is starting to catch himself when he loses his balance. He also has been working in the kitchen- loading and unloading the dishes. On Monday he is going to make himself a smoothie for breakfast; he's really excited to get back in the kitchen.

Dirk's speech improves daily. We are working on intonation and facial expressions because he has a flat affect. He keeps us all laughing during speech sessions because he says some of the most random, funny comments. He makes himself laugh a lot, which is wonderful.

Dirk's eyesight is still an issue. He continues to have double vision. His vision is definitely improving and his eyes are becoming more level, but it's frustrating for him. We were told by the doctor yesterday that it may take a year for his eyes to heal and if they don't there are surgical options. That means I will be doing all the driving for sometime- oh boy. I think we will be sticking to Marin County.

Okay, this has been a pretty hard week for us. Fortunately it ended well, but it was a tough few days. Wednesday we received the results from the MRI/MRA. We now know why the bleed happened. Dirk has a cavernous malformation in his midbrain, which is associated with a developmental venous anomaly- quite a mouthful. He has had this malformation his entire life and the bleed could have occurred at any time. (Thank god we were somewhere where Dirk could receive almost immediate attention.) As described to us by the Neurologist we saw at UCSF yesterday, it is like an island of blood cells associated with a prominent vein. It is mostly separated from the blood supply- meaning it's almost its own little entity. Obviously, though, it's not too separate because Dirk suffered a large bleed.

What can we do? There appears to be 2 options for us. The first one is surgery. There are very few surgeons in the country that will perform this type of surgery, but Dr. Michael Lawton at UCSF does do this surgery. He will only do it if he feels he can safely go in and remove the area. As far as we know, it will only be an option if the bleed created a tract for him to access the site. Meaning, it bled towards the surface creating a pathway. It is a very high tech surgery that is all preformed under a microscope (I think) and takes hours because surrounding this malformation is healthy brain tissue that can't be disturbed at all.

If surgery is not an option, we (UCSF) will just have to watch Dirk very carefully. If it bleeds slowly, which sometimes happens with this type of malformation, it may create the tract we need for the doctor to go in and safely remove it. Also, this type of malformation is "low risk" - that sounds strange to say after what we have been through in the last 9 weeks, however, it is not in the arterial system where there is high pressure and would be significantly affected by changes in blood pressure or heart rate.

So, we wait, but not too long. Monday the Neurosurgeon will look at the films and determine if he wants more defined images. Wednesday, the Neurology team at UCSF will discuss Dirk's case and by Thursday we should be closer to knowing if surgery is a possibility. If it is, we will probably do more imaging and get Dirk scheduled for surgery the following week (two weeks from now). Crazy..if we could possibly remove it that would be incredible. Dirk and I would be able to return back to life without this anomaly hanging over our heads.

My head is spinning after putting that all on paper. Dirk and I are just trying (and hopefully succeeding) at staying positive. I personally had a tough week because I have been so focused on his rehab the past 4 weeks and how well he is doing, that I was quickly brought back to the reality of what we are facing. It's huge and scary and it really really stinks. It seems so unfair. As Dirk would say, I have had "leaky eyes" few days. We both have so much pain/sadness on the inside that I tend to cover the tear department for us.

Please continue to keep us in your thoughts and prayers. They have worked since day one in Hawaii and I feel so blessed that Dirk is with us.I'll send another update when we have more information.

Muck love and thanks. Kelsey.

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