My nephew Spencer, his wife Michelle, and their three children came to visit us this month. It was the first trip to Nashville for the whole family together. Favorite moments: Zach (a true Texas boy) peering into our garage and saying “Is this the basement?” Sam (another true Texas boy) peering into a heating vent and saying “I don’t see any steps to the basement here”. Regan (a Texas girl with lots of sense) saying “The basement is gross, I don’t want to go there”. Regan walking Nate, who weighs twice as much as she does, on the leash. All the kids in the creek on the Richland Greenway. Sam teaching me to cook pancakes out of sand in the playhouse. Kids putting on a show for us in the treehouse, most of which consisted of frantic whispers: “No, you say it”, “No, you do it”. Zach trying to teach Morrie tricks. Making a city out of a roll of white paper and tea cartons. Sam looking at Caroline’s garden asking “Is she buried here?” Regan saying “We really wanted Caroline to get well”.

Kate’s Left Foot—hey, maybe we should make a movie…Kate can no longer wear a brace on her left foot without a great deal of pain. The botox injections are not helping with the spasticity any longer, suggesting that she has a permanent contracture now. She’s going to have surgery at Vanderbilt with Dr. Mencio in August. He’ll release/lengthen/stir the tendons in her leg and she’ll wear a cast for six weeks. Hopefully this will allow us to brace her again more comfortably. Kate’s actually in a cast now and will be until the surgery. She’s getting around better in it than she was in her brace.

We made a trip to Duke at the beginning of June. Kate had the head-to-toe work-up, and most of the results were what we expected. The transplant enabled her to produce average levels of the enzyme her body lacked for a couple of years; that level has now declined to about half the average. The transplant appears to have helped her lungs, liver, and spleen. It has not slowed her neurological deterioration. Kate now functions at a five-month-old level on developmental tests, and she has lost many early developmental skills (e.g., visual tracking, object permanence). Her peripheral neuropathy and the brain waves suggestive of seizure activity are both increased. She also has some mild weakening of her heart, which is a new finding, and one we’ll follow up on here with a cardiologist. I think this trip was a harder one for me and Doug than it was for Kate.

Doug continues to work at his practice, I don’t know how. I am most at peace in the yard, messing with the vegetables and flowers. We have an amazing crop of lettuce and beans right now. Caroline’s garden is full of beautiful flowers. Elaine, the rosebush you sent us in memory of Eileen is in the ground and has all kinds of growth on it. Thank you so much—nothing could have made me happier.

Best to all,

Alison