Sunday, January 27, 2013

A Very Special Day

Ezra had a very special day last week when he had the opportunity to visit the New York Hall of Science for an after-hours private tour. The trip was arranged by wonderful friends of ours (we love you FGP's!) who knew that Ezra would be thrilled to visit the science center. What makes the Hall of Science so exciting for our little space lover is the museum's Rocket Park where they have two former NASA rockets. Ezra has toy models of these rockets, which he plays with all the time, so you can imagine how excited he was to see them in person. When we were driving towards the museum and the rockets suddenly appeared in our sight, he had to turn away because he couldn't handle the excitement! Ezra had so much fun exploring the rockets and playing in the pretend space capsule. Then he had the chance to explore the inside of the museum all by himself. It was like a dream come true for the little scientist. He still needed to wear gloves, but it didn't get in the way of the fun (except when he dipped his hands into a big container of bubble solution and his gloves were soaked, but thankfully that was at the end). The folks at the Hall of Science went out of their way to make sure that Ezra's medical restrictions were accommodated and that all of his many questions were answered. We will always treasure our memories from this special day.

On the medical front, all is status quo. The doctors are doing some extra testing on his immune system to make sure that whatever small smidgen of donor cells is left isn't doing anything to improve his immune system before we make any decisions. His counts are still on the low side and some weeks are better than others, but overall he is stable. We have started the process of consulting with other doctors on our options.

Many of you have kindly asked what you can do to help. It would be a miracle if a matching donor for Ezra showed up in the registry. So, we continue our plea to please register as a bone marrow donor, encourage your family and friends to do the same and consider making a donation to help sponsor the processing of a donor test kit. You can do so at

As always, thank you for your support and caring.