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Letters

July 29, 2006

Hello!

I am going to try and send out weekly updates so that everyone can feel up to date on Dirk's progress and so that I don't get too far behind on relaying information. It's late Saturday night so forgive me if the letter is a bit choppy. Before I forget, please check out the amazing website our friend put together for us: www.dirkandkelsey.com. It's pretty special. Also, sorry if you receive multiples of emails...I am not sure who's on what list and I always have to ask Kiki and Chris to forward my emails. One day I will consolidate.

For the most part, Dirk's progress is slow and steady. He walked 150 feet this week with stand by assist, which was really exciting. He wobbles, but his balance reactions are improving. He is feeding himself 80% of the time and is enjoying every sweet he can get his hands on. His roommate has a sweet drawer and I was denying him chocolate, as was his brother. Well, we stepped out of the room for a few minutes and he coerced a nurse into getting him the chocolate- I couldn't believe my eyes. He was very proud of himself.

This past Thursday Dirk went to see a neuro ophthalmologist to examine his eyes. Dirk's main complaint this past week has been that he can't see straight. He has double vision and towards the end of the day experiences some left eye blurriness- I think because he gets tired. Also, he is unable to look up and down. The doctor gave Dirk botox injections (3 in the left and one in the right) to help relax the eye muscles and hopefully even out his disconjugate gaze. I think the theory is if his eyes are on the same plane he won't have double vision. (I try to convince him that it might actually be pretty amazing if there really were two of me.)

Friday we had quite a day. First of all he woke up feeling like he could see a bit better, which was great. Botox injections take usually 10-12 days to kick in- so that was a surprise. Around noon on Friday we headed out to Marin General Hospital for a venogram and possible filter removal from his IVC (inferior vena cava). The filter was placed on June 16th after we discovered blood clots in his lower extremities. It was determined at Kentfield using ultrasound that he no longer had clots in his lower extremities, but we used the venogram to check his pelvic region. It was very important to check before removing the filter because it would be an awful situation if it was removed prematurely. Fortunately, we were able to remove the filter. If we had not been able to remove the filter we were told that Dirk would have needed to be on blood thinners the rest of his life. However, nothing with Dirk goes quite as planned and while removing the filter the MD "nicked" his femoral artery requiring Dirk to stay in the hospital for 5 hours lying flat on his back. Poor guy hadn't eaten anything since the night before and we didn't leave the hospital until 9:30pm to return to Kentfield Rehab. He was a trooper through the whole experience.

Dirk did really well today. He goes through moments of needing lots and lots of encouragement, but that's a very normal response. He still laughs and makes jokes, so I know he is doing all right. And every night I tell him I am going to stick this out with him and we will get him home soon. Actually we are coming home on Sunday (tomorrow) for a few hours. He is so excited to see the cats and be home, even if it is only for a few hours.

Next week is a big week. Monday we are going to UCSF for a follow up MRI/MRA. We return on Friday for an appointment to discuss the results and the next steps. We still don't know why this happened and we may never know, but it's important that we search for some answers.if they are there to be found.

I promise to send an update as soon as we have more information. Thanks again for everything. Everyone has been amazing- I can't believe the support we are receiving. I want you all to know that I don't feel alone. Even when I sit here after 11pm in our house I know there is someone out there thinking of Dirk and sending him good wishes for a speedy recovery. Thank you from the bottom of my heart.

Love, Kelsey

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