Sorry it has been awhile since our last post. Things have been a whirlwind the past week and half. We have had many friends come in from overseas passing through DC. It was wonderful to see everyone and it really lifted our spirits to see everyone. It also reminded us how much we miss Ecuador and our life there. Nana also visited this week, which was fun for the boys. They went bowling and she helped keep the system rolling during the week while Kirk was at his conference. We will post some photos tonight of our adventures.
Mason has been feeling well overall. If he had hair, you would really never know what was happening with him. He naps every afternoon and continues to eat a lot from the steroids. We still struggle with constipation and he continues to wear a pull up for security.
We just got news that he will have his MRI on July 9. So our hope is that nothing has grown and we are stable. We will get him on the SAHA clinical trial. It appears to be the best course so far.
FYI- we have some wonderful friends who have started a fund in Mason's name. We will post the information about this when we have more details. They generously started this so that Kirk and I could take time off and spend time with Mason while he is feeling well. Since we have used up so much vacation and may need to take unpaid leave, this is a big relief for us. If you want more information now, you can e-mail us directly at kirkndanielle@yahoo.com
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