The journey is long...

It's 11:00 p.m. and I'm home for the night. I must say that it was a relatively positive day. We definitely feel every bump along the roller coaster ride, but we try desperately to remain optimistic. As we grow more and more weary, this becomes more difficult.

I think I posted earlier that we had to decide whether or not to allow more attempts at drawing blood from Isaac. After discussion with the physician, the geneticist, and each other, we agreed to allow one more attempt as long as the person with the greatest chance at success was behind the needle. About 4:00 this afternoon, Dr. Chung came to try. She had not previously attempted to draw blood from Isaac. Interestingly, her technique was totally different from any of the other doctors. She went strictly by feel. She tried first on Isaac's right arm, but was unsuccessful. The left arm would be the final shot at this. After some more feeling around, she successfully drew the full 4cc's necessary, plus an extra half cc. There are no words to describe my relief when that was all over. While there were no guarantees that the blood work would reveal anything, there was also that small chance that it could shed some light on the mysterious illnesses of all three of our children.

About a half hour after the draw, Janel and the nurse were giving Isaac a bath. Someone came to the room to tell our nurse that lab was on the phone with results. I could see our nurse's face drop. Since her hands were full, she asked one of her colleagues to answer the phone for her. A minute later another nurse came and told us the blood had clotted and was therefore not able to be tested. This was the low point of the day. We just don't feel like we can put ourselves or Isaac through another draw. There is a limit to what we can endure.

On a brighter note, we were so very, very blessed by a number of visitors today. Some dear friends from seminary stopped in with food, lattes, and new reading material for Janel. We visited a while and then they offered a most beautiful prayer on our behalf. We were so blessed by their visit. Later this afternoon, one of my youth sponsors from the eastern shore came by. He drove over four hours. We had a wonderful time catching up. We laughed a lot, and I commented to Janel afterwards how unorthodox and effective his pastoral care was for us. Before he could leave a PTS grad from '09 who happened to live in the apartment above us stopped by. It was a pleasant surprise, and we were again blessed by the prayer he offered for us.

Tonight when I talked to Janel, she was again dealing with new medical staff who don't know our story. This is nothing against these new people! We are just weary of having to explain the intricacies of our situation again and again. Isaac is eating well, and they are gradually weaning him off oxygen, but his respirations continue to be too fast, particularly after feeding. The new staff tend to take a hyper-conservative approach and we are again left to advocate for Isaac. This takes lots of energy; we are tired; we long desperately to all be at home together; yet we want Isaac to be healthy before coming home.

Please pray for strength for us as we continue the journey. It is long, and it would be utterly impossible without the strength and support that so many of you are offering along the way.