An Early Morning Phone Call......

Day 5 post transplant..........

I have always been an early person. I am the first in the evening to say, "I am sleepy", or to crash on the sofa. Because of that I am also the first one to be up. I seem to resonate most with the predawn hours. When I am in my creative mode this is the time that i find my inspirations and my burst of energy to get to work. It is a biological clock that would be best found useful on a working farm when you are up with the rooster.

So, this early morn I am up and reflecting on what just happened. So big, so hard to get your mind around it all. From the experience of end stage disease that turns out to be a hopeful event, to waiting for a call to have a new life, to depending on the generosity of someone you do not know in their hour of greatest grief, to watching the miracle happen as the trach tube is removed and new lungs are used for the first time and to see my sweet daughter's tears of awe as she says to me, "I just can not believe it Momma. I got new lungs. I got good new lungs." What an incredible experience this life has offered us.

Yesterday I realized something else. Doug and I were nearly the same age as Anna is now when she was a baby of 18 months old and attached to a vent and tubing in the pediatric ICU at Stanford. At that time when Anna was diagnosed we had no idea how long she would survive. It was a severe entry into the CF world with her spending 5 1/2 weeks on a vent in ICU. That is how we began and learned about living with this disease. It has been nearly the exact same amount of years to this day that our CF journey has changed dramatically. At that first juncture we were about 29 and now we are 58. That represents two distinct chunks of our lives, the same length of time, in a way like chapters. The first 29 years were pre CF, the second 29 years CF and now we are post transplant and in the third phase of this life in relation to this disease. So interesting to note. The phone is ringing...................

It is almost 6AM and Anna called and needs me. Off to the hospital.

It is tough to go through this alone. Anna needs help and someone to talk with. I am here in my usual place by her bed side being her mom. The morning has gone well. She is about to have more dialysis but they are still positive about everything. Just keep helping with the healthy kidney vibes............. please.

Anna went for her first walk! She also had her first fitting for her new wonderful mask that she will be using for a while. She did really well around the nurse's station and up the hallway. Anna's legs are very strong helping her get up and down from her sitting position. She can not use her arms in any way. She is also now approved for regular food and had a graham cracker. So, we are moving forward.............