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Thought I would update everyone on Grace’s regular CF appointment she had on Monday. She has an appointment every three months. Her appointment went great and the CF doctors were again impressed with how good she looked. She is holding steady on her growth curve and her chest X-Ray came back clear. Grace has had a little trouble with sinus infections lately and even had an eardrum burst a couple of weeks ago. Her CF seems to present itself that way more than any other. Winter is always the worst time for her and she also started kindergarten this year, so I’m sure that hasn’t helped.

The most promising thing about the appointment was what Dr. Black said about the future of CF treatment. Without getting into the specifics, he said that Grace has the two CF genes that are best to have. He is very excited about the therapy in the pipe and said he sees big changes in the next decade. That means that by Grace’s 16th birthday, he is very optimistic the treatments will be advanced to the point of minimizing the disease’s effect on her body. Good news indeed. The important things that Grace has going for her is her current good health and strong support from family and friends around her. She’s a special little girl and everyone does their best to keep her healthy.

I had to also add this picture of her making crafts. She asked me if I had “a big piece of paper”. I didn’t and when I came in her room later, she had taped together 6 sheets. She then drew a picture of a girl on it and cut her out. She’s very crafty.

Filed under: Cystic Fibrosis, News on February 4th, 2009