Wednesday, May 27, 2015
I do not have much to update as far as Eli, but you might can sense my growing hatred for paperwork obstacles and the people that make paperwork obstacles to accessing potentially life-saving treatment. Mayo is ready for us, their door is open. But, it is last on Vic’s list because - unlike when we were open to being first on the NOAH trial in March - Eli’s “disease burden” is unknown right now, but it is guaranteed to be greater than in April when he was last
So, New York, as far as we can tell does not have that exclusion, but since we can’t get past paperwork, we can’t ask a doctor to decipher anything for us. We did learn that the pathology slides arrived today, but there are some complications with them, which I won’t go into yet. But, we just keep praying that we will suddenly have a breakthrough there, but it is taking so long, I think we may have to go on to Houston to stabilize him. As soon as we plant a foot, I will let you all know.
We have not done anything very exciting. We stayed at home the entire Memorial Day weekend. We had some fun things we could have done, but we had some chores (finally got all out of my mom’s place) and the kids were enjoying just playing video games without me on them to get off. That is something that all four of them can do together. Plus, I anticipated, and continue to anticipate that Eli will be whisked away, so I just thought that he should stay home as much as he wanted to. We had to go to the St. Jude clinic on Friday, just to check labs. He was complaining about his side hurting, so they did a CAT scan to check the shunt and things, but he looked fine and hasn’t complained since. We played with a robotics team today, and Eli got to drive their robot Vera. Other than that, we are home, the kids play video games, and play together upstairs. In one of the pictures, Eli has built a Ford dealership for Caleb to come buy cars at, or drop cars off at, etc. He looks good, and seems beautiful. It makes it really easy to enjoy denial.