Last week I received a phone call from two of the girls Doctors. This always makes me a little nervous because it never seems to be good news. Lucy's Genetics Doctor was calling to give us the results of the genetics testing that she had over the summer . She has a deletion on chromosome x in the region of the gene for Duchennes Muscular Dystrophy. The good news she said was since girls have 2 x chromosomes that the other x will take over and she should not develop the full blown disease. The bad news is she is at a very high risk for developing cardio myopathy . She will have to have a thorough heart exam every year to monitor her heart function . If she has children her son would have a 50 /50 chance of developing the disease and a daughter would be a carrier. But the really great news is SHE CAN ADOPT!!! When we adopted Lucy 4 years ago the only special need that was in her file was cleft lip and torticollis. Lucy has become the poster child of all the "Unknowns " that you are to be open to when adopting a special needs child. Every organ in her body is affected with some health problem that we did not know about when we adopted her . The first year home , it seemed like she spent more time in the hospital than at home. But after 4 years home she has grown stronger and stronger each year. She is now doing great ! In January she will have surgery on her solitary kidney, but that should be the only surgery for her this year . This little girl has been such a joy . She has the most contagious laugh of anyone and can make me smile just by looking at her .

The other Doctor that called was Gemma's Hematologist. He was calling to tell us the next step in the attempt to remove the excess iron from her body . Since the daily dose of Exjade was not working and producing too many side effects , the next option is a daily infusion . She will go to the hospital on Tuesday for a test dose to make sure she does not have any reactions and then the home nurse will come to our house and train Ed and I on how to administer this daily . ( Yeah) We are praying this works because the final option is to stay 4 days a month in the hospital on IV. chelation . Gemma will then have her blood transfusion on Wed.
Gemma has the cutest little personality and boy does she love to eat . She can smell food a mile away. Her big Buddha belly grows larger every day and she love her best friend ... Teresa.

Teresa , well she is doing OK. I don't think she has gotten back to her base line yet . (before she became so sick last month from a common cold). For the past week her face and eyes seem to be a little puffy , she also has a little cough that comes and goes . We head back to CHOP on Friday to see if the Sildenafil has had any effect on her lungs and heart . I can't say that I think it has made a difference but I am hoping the echo will show better results. She continues to have the best attitude about life . She walks around all day telling me how happy she is . From something as little as singing a song in church (her favorite church song is the Alleluia , and when it comes time to sing it I think the whole church can hear her) to making Christmas cookies, she just loves life.

Experiencing life through Teresa's Eyes has been such an amazing journey . Even on the bad days she finds such joy in the smallest of things. I never thought one little soul could teach me so much . I see now how much I really do not know about life.

Enjoy the little things in life... for one day you'll look back and realize they were the big things.