Butterfly Center & Science Museum 4/12/18

We went to the Natural Science Museum today. Robbie had fun taking pictures of the Butterflies, rocks, and precious stones. There were several busloads of kids there, so we didn’t stay too long.

Now we are at MD Anderson to get his hearing aids adjusted. He really likes Hearts for Hearing in Oklahoma and is not happy to switch audiologist!

After waiting in the waiting room for an hour, we just learned they can’t help him and the appointment was made by mistake. I even called to check before we came.

Tests and The Butterfly Center 3/22/18

Ruth and I took Robbie to his appointments at MD Anderson today and then we took him to the Butterfly Center. It is one of his favorite places, but we haven’t visited since we moved to Katy. Praying his heart tests went well today. I’m not sure why they needed additional tests, so that always makes me nervous. Robbie loves seeing his sisters this week. Josh and Lynn drove back to Tulsa today and now Ruth is here for a few days.

Science Museum and Medical Updates 11/29/17

We visited the Science Museum and the Butterfly Center. It was very peaceful there today.

Medical Updates:

His bloodwork matches the clinical study, so now his tissue samples have been sent off to be tested to see if they are also a match. We will find out in 3-4 weeks.

Countdown to lung surgery in less than 2 weeks. We are all having problems sleeping. We are buying precious time with the surgery, but it isn’t a cure. From what we hear, it can be a rough recovery. He will have some tests next week before the surgery. Surgery is Monday December 11.

Other Clinical trials: Thank you to the people that have been researching and sending information. If he doesn’t qualify for the first study, we will look at all the alternatives.