Here are some photos of Ezriel enjoying Grandma’s Mother’s Day cake from Aunt Emily.
As I reflect on the last few weeks/months of my life at work, I am struck over and over by how important everything we do or say means to sucess and happiness in the lives of others. Giving less than our best, whether it is in kindness or in productivity, can have profound effects. I think of this in terms of our beautiful granddaughter, Ezri, and her brain tumor and our continuing search for a scientific miracle. I think of this in terms of the individuals who work for me who trust me to promote the business of research so that they have jobs to support their families. I think of this in terms of those same individuals who have to do their best in order for me to promote the business of research. I think of this in terms of my peers who provide lateral support for my work and how much my best depends upon their best. And I think of this in terms of the scientists who cannot discover miracles unless they get the best from me. Miracles depend on everyone, and when one person is not present and does not do their best, then those miracles will be delayed or perhaps they don’t happen at all and that hurts someone.
This week we got house plans from Food for the Poor for houses for individuals in Nicaragua, Dominican Republic, Haiti, and Guyana. These houses are designed to withstand weather conditions and to provide safe shelter for the residents there. The cost of one of these houses is about $2600. That’s just a little more than we Americans would spend for an HDTV. How different are our needs and their needs. How much are we willing to give?
It has been so long since I have written, that I just want to do a short update, then will try to get back to writing every day. The late winter has been so busy with work and baby, that it has been hard to stop and write. I haven’t had time to sit still and just be.
The baby is doing well and at 15 months she is walking fairly well, loves her shape sorter, but doesn’t talk much. Well, she does say dog – that seems to be her favorite ‘person’ right now. Gave her first ice cream pop-up last weekend, and she really enjoyed it. She gets her monthly treatment on Monday. There is a possibility of a new way to deliver the medication through a capsule implanted beneath the skin. That would be really nice – the hitch is how to get the dosing right for her.
Went to a wedding yesterday, and it was so nice to sit a minute and enjoy seeing two people who seem to fit together like hand and glove. They ‘found’ each other after 40+ years of not finding the right person. Just proves that there is a time and place for everything.
Yesterday was a day when two very difficult weeks eased into a distant memory, and I was left feeling great appreciation and satisfaction that it was successfully over. After two weeks of having my bone densitometer not working and having to cancel patient after patient appointment, six service visits from four engineers, and having electricians in to rewire the lab, everything was repaired and put back into order. The culprit that wreaked all this havoc was a tiny 1/4″ washer that was blocking the x-ray beam. Who knows how long it had been there – it was in a part of the machine that was sealed. The machine movement caused the washer to migrate over time until it got to a place that caused all this trouble. It was so tiny that four engineers worked on this machine and no one saw it.
In this country where we have too much to do and not enough time to do it, each engineer was trying to get the work done quickly and go on to their next appointment. Each of them came from a distance and still had far to go. They replaced every part in the machine that could have been causing trouble. The engineer that came yesterday came from farther away and had another call in the evening when that lab was closed. So, he had all day to spend with us, and he was kind and patient. He was more experienced than any of the previous engineers and worked quickly, but methodically from top to bottom to make sure each part of the process was exactly right. He was of great assistance to me because he knew the machine software even better than I do, and he gave me great advice about how to maintain my unique configuration.
It was just before noon when the lab technician came in to show me the washer. I’m going to have it framed.
This is a slide show of the baby helping me “sort” my quilt blocks and quilt patches. This is far better than some of her high tech toys – if her smiles and laugh and focus are any indication.
People are so kind. We’re going to Phoenix soon to The Barrow Neurological Institute (BNI) at St. Joseph’s Hospital and Medical Center to have the baby evaluated by the doctors there. We reserved accommodations for a 2 bedroom suite through Expedia. We got a call from the manager and when she found out why we were coming to Phoenix, she upgraded us to a much more comfortable suite. It will truly be appreciated. It is so hard to keep a baby cooped up, and the extra space will be well used.
BNI has been the leader in the US for treatment of children with hypothalamic hamartoma tumors. We are anxious to connect with doctors who have extensive experience with this and to have them provide medical care for Ezri.
Here are some recent photos of that gorgeous baby (cooped up in her “Pack and Play”: