The adenovirus counts in his blood keep going up and down. They were back up in the beginning of last week and down again by the end. Today, at clinic, they sent urine, stool, blood and nasal swabs to test for adeno again. We are only going to the clinic about twice this week, but both days get long.
Elijah is getting bored hanging out at the apartment for so long...we take alot of walks, ride the elevators in the apartment, and mail letters (he has been watching an elmo video about sending mail!) He is getting a little "stuck" watching the same videos and playing the same games each day...and so I am trying to change things up as much as I can for him. He thrives on routine and so, while I try to keep things predictable for him, I don't want him so dependent on routine that he can not handle the unexpected in his day.
This process is not about the balanced life...it is about the extreme in many ways. By stretching the limits, the chance at survival is increased. By hanging just on the edge of the extreme, then the balance that must be achieved can occur...suppressing the immune system to make sure that Graft vs. Host disease does not flair up..and yet having enough immune system to fight off infections that can quickly becoming life threatening. I am amazed at the doctors and staff in the BMT unit...they are so good at what they do.
In our boredom, I am reminded of what a rich life we have. My life is filled with a faith that renews me each day, rewarding work, energy to do the things that need to get done and plenty of joy in each day. As we stay isolated from the outside world for the most part, I am reminded to be thankful for so much in my life. I am thankful for health, for a great big family that keeps life filled with adventure...I am thankful for the opportunity to serve others with the gifts God has given me...
Lord willing, It won't be long and we will all be back together in the same house (probably some tie in November)..and my compassion has been swelled for all those whose families who must be separated like this..
And I am thankful with how Elijah is doing on his journey with Schwachman Diamond Syndrome...He is alive! And I don't want to ever forget what a gift that is!