Meet Lilly

Okay, time to come back and check in with my adult friends. I've been busy watching so many Backyardigan episodes with my two-year-old grandson that I can literally sing their theme song.
It is snowing here in Portland, not a norm in this rainy city. In fact, my sister-in-law is stuck near her home and the police are not allowing her up a steep hill. So my husband is off in our four-wheel-drive, headed across town to help her out. So while I'm waiting for his safe return, I thought I'd introduce you to Lilly. Lilly is our great-niece and she just turned three years old.

Our little girl is very tiny. She is struggling with an illness for which the doctors do not have a definitive diagnoses. Around age one she quit eating normally and became very ill with ear infections, pneumonia, and other illnesses. Since that time she has been through countless tests and doctor's visits, and is currently seeing specialists in Seattle. They have said that she has super low B and T cells and non-functional antibodies. They have been giving her immunoglobulin G by IV to give her a boost. They know that she has many other symptoms like low appetite/slow growth but so far nothing to tie everything together. She has short telomeres and they think she might have some previously unknown form of Dyskeratosis Congenita.

Despite all of these hurdles she remains a joy to all of us who know her. Her hardworking parents divide their time between jobs, school, and caring for Lilly. In March they will go to Disneyworld as part of the Make A Wish program that will be granting a wish to Lilly, who is all things "princess." We can't wait to hear all about it!

In the meantime she had a very special visit with Santa. After waiting in line at Macys, for what seemed like forever, it was finally her turn. She had been worried about the visit, more than a little frightened. But then she just took off and ran to him, wrapping her arms around the jolly gent and proceeded to hug him intensely for what seemed like forever, not letting go long enough for her mother to get a good picture! After the bear hug, she proceeded to talk to him in what her mother described as a "strangely intense" manner for about five minutes! Her mother couldn't hear what she was saying, but the kindly Santa was quite taken with his tiny visitor, and told her mother she could come back anytime. (Click on the photo to see their expressions.)

We don't know what they talked about, but we do believe in miracles. So please say a prayer, or send healing energy to our little darling. 2010 is going to be a great year for Lilly!