Friday, February 15, 2013

I don't even know where to begin....

Gosh it has been so long. We have been on a roller coaster ride for last several weeks. Preston still seems to be struggling, but the struggle fluctuates on a day to day basis. He is still having lots of diarrhea, and intermittant severe belly pain. He was started on a second medication last week that is supposed to help get the intestinal infection under control. We are seeing a specialist next week, to discuss the possibility of a fecal transplant. Yes you read that right. They will actually put someone elses stool (Matt's) into Preston's colon to try to grow some good bacteria there to help fight this battle. The concern is that due to the immune deficiency that the bacteria from Matt could make him sicker too. So we aren't really sure what we are doing yet. Our immunologist has been doing some research as well, he actually has mentioned giving IVIG orally into his stomach and trying to see if that would make a difference. Please be praying for wisdom and strength and peace and hope for all involved. WE also have been to a geneticist. This appointment proved to be very emotional and overwhelming for me as I went alone. THey are thinking that there are a couple of possibilities of genetic syndromes for the boys. In doing research I don't believe either of them are correct, but I am no expert. So we will be waiting several weeks for the results of the DNA tests. We got a huge blizzard last week and Matt built a "quincy" for the kids. It is essentially like a snow cave. It is huge. They are hoping to sleep in it this weekend. I am so thankful that the kids have such an outdoorsy dad that allows them to have these cool memories. Preston is not a huge fan of the snow, but he might like it when he isn't feeling so crummy. The rest of us are doing ok. I am operating in what seems a continual state of exhaustion but each day I pray that God gives me the energy to get through the day and every day he meets that need :-)

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