Playing the Waiting Game

We are in a little better sprits today. We made it back from lunch without some news about a scan that showed another problem. We were happy to talk with Dr. Weller this morning (a familiar face from whom we have been seeing since December) about Claire's situation and maybe a little timetable for events. He made it very clear that the heart is the number one priority and the malrotated bowel can wait. As long as there is no emergency, it sounds as though the intestines will not be addressed until later.

The past two afternoons have been quite difficult. I just keep thinking, can't this little girl catch a break. I am amazed at how perfect she can look on the outside, yet how damaged she can be on the inside. Stupid heterotaxy!

Mandi made reference to the NICU roller coaster. I would say this is a pretty accurate analogy to describe the activities from the last two days. After the difficult news yesterday, we decided that we needed to run home and hang out with Colton a little. My sister came down to stay with him for a couple of days and I know that he has had a blast with his Jazzy and C.C. We ran into a little traffic on the way home, not thinking it was Good Friday and there would be more people on the road traveling to see family. I knew my patience was a little thin when I had to block a car that was trying to drive up the side of the highway to get off at the very same exit I was waiting for. I was pretty pissed. Pretty funny the things that can irritate us at certain times.

Eventually we did make it to Fieldcrest Dr. I was thankful for the weather to allow us to run around outside, kicking and throwing balls at each other. Very therapeutic, and I just enjoy being around that little guy.

After the past two difficult days, we have decided to move from our Ronald McDonald House back to Delaware. I believe this will help us feel a little more normal again. The RMH has been a blessing and I truly appreciate the service they provide to families during the most difficult times. For the most part, the people were very friendly. I know that they probably have to guard themselves from becoming callas to individuals that take advantage of their free gifts. I could tell that they know they get taken for some free rides, yet they decide to move forward and offer assistance. If you have ever worked in a soup kitchen or homeless shelter, it was the same type of attitude in which they are pretty forward with guidelines and expectations. The population at the house was very diverse, from Amish to urban, southern Ohio to well, you know what I mean. The facilities at the RMH were amazing. It was very clean and contained all the amenities necessary (laundry, exercise room, playground, tv rooms and library, free wifi). We are leaving with a very positive experience and probably will take advantage of this service again when Claire Bear has some of her surgeries.

Tomorrow is Easter. A day of Resurrection. A day of Hope.
I sure hope that the rising of the sun tomorrow produces in our lives the hope of new life, of joy and healing.