August 25, 2006

Hello from 121 Palm Avenue!

It has been so great having Dirk home - what a treat for the two of us. Just like coming home from Hawaii, this is another adjustment that has its own set of challenges, but to have him by my side is the best.

Dirk has been working hard in his therapy sessions and with me. We go on daily walks and Dirk's endurance is quickly improving. For example: on Saturday Dirk walked 12 minutes x2 with a rest break and today he walked for 30 minutes straight with three 30 second periods of running. And the landmark that took him 12 minutes to walk to he did in 7 minutes today- wow.

Dirk is receiving his "real" therapy through Rehab Without Walls. It is a wonderful organization that comes to the house to work with him. PT/OT and speech come two times per week and neuropsych comes once a week. This week were mainly the evaluations and next week is when it really kicks in. We are trying to create some type of routine for Dirk so that his spirit/energy stay healthy and he's motivated to participate. He's come so far, but he still has a long way to go. For example, Dirk's exhausted by midday and has a 1½ hour nap and he is in bed for the night by 7:30-8:00. It's so important that he gets sleep because his cognition, speech, gait and emotional state deteriorate if he doesn't.

The biggest news of the week is we have scheduled Dirk's surgery for September 12th. Earlier this week I emailed the neurosurgeon with some questions. As you all know, we are very anxious to have surgery as soon as possible, despite the risks and the overall fear of brain surgery. My questions were: is it safer to do the surgery in 4 months, will the outcome be different if we wait, does he anticipate any other deficits besides his eyes, and is the damage permanent? He promptly emailed me back and we have spoken on the phone. The safety and outcome of the surgery are the same if we do it now or later. He does not anticipate there being other major deficits, like left sided weakness. At this time, he can't say whether or not the damage will be permanent to his eyes because it is unclear exactly how thin or thick the layer of healthy brain tissue is between the malformation and the surface; however, surgery/botox will be an option for Dirk if his eyes do not heal.

There are unknowns going into this surgery, but as a couple we believe the upfront risks are less than the risk of Dirk experiencing another devastating bleed. The chances are 1-10% per year that he could have another bleed and since we don't know where he falls in that percentage range we have to assume he's the 10%. We are both so frightened of surgery, but I think we will breath a huge sigh of relief afterwards and we can forge ahead with therapy and life knowing Dirk's going to eventually be okay.

I hope these letters are helpful and make everyone feel like they are informed of what is going on. It's so hard to paint an accurate picture when everyday we are faced with new challenges and hardships, as well as, little miracles. I was telling someone yesterday that the emotion you feel going through an experience like this is too big to accurately describe. Part of its tremendous sadness, but it's also happiness because he's alive. I try to stay focused on the positive and savor the moments when Dirk laughs because laughter is the best medicine.

Thank you, once again, for your good wishes.

All my best, Kelsey.

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