Holiday Cheer

I miss Ava today. We only spent a short time at the hospital so that we could spend more time with the bigger bugs today. I do have to admit that it felt nice to feel a little normal. We did some pre-Christmas toy sort. We also enjoyed a family Christmas dinner tradition with some relatives on Allan's side of the family.

For a few minutes I felt like darkness was not lurking around the corner and I enjoyed our time. When it was time for picture taking I was catapulted into reality and my arms ached at how empty they really are. I try so hard to not think of "how it could be" and focus on how it is. The way I try to do this is to remember that Ava was not born to be able to act like how a baby is "supposed" to be. Somehow that can numb some of the pain. This time it's easier in that I have three beautiful girls to hold in my arms. With Eric those same arms were suddenly empty.

Ava had a good day today. She really didn't seem to loose any of her skills from the prior days. I don't think she really built upon them either. I didn't get a chance to hold her, we weren't there long enough. I hope to have a chance to tomorrow.

I spoke with our genetic counselor at CHOP. It seems Baylor did receive the muscle biopsy sample on December 10th. The counselor was able to get the head of the lab to commit to expediting the testing. Hopefully there will be information by the end of the year. Seriously, I don't know how that's expediting anything as that will be about 3 weeks from the time the sample was received. Three weeks is the quote they give on how long these studies take. At this point it would be nice to know the information and if there are any ideas on ways to help Ava. We know Ava has the same disease Eric did the biopsy results on these tests will just provide more information.

We are tired and are wondering what we could tap into to find energy. I could fall asleep standing up, literally. Actually I fell asleep while trying to change sheets on the big bugs bed. Yet somehow God gives us the strength and energy to plod along on this crazy road we are on. We continue to trust He will lead the way.