Belated Update

I’m going to keep this short due to time constraints. Sorry I’ve been negligent in keeping you up-to-date.

Joy’s CF is well under control. She had a miraculous winter, with absolutely no respiratory infections (she had a virus last week lasting only one day thanks to the adjustment by her Osteopath). However, she is currently struggling with physical therapy for tight Achilles Tendons (due to toe-walking, that affects her running) and vision therapy for a slightly lazy eye. Her vision problem is not noticeable except that her left eye can only be corrected to 20/40, and her minimal lack of depth perception slightly affects her softball skills. She gets very frustrated that she must endure so many medical hardships, but we get very excited about recent CF research: http://investors.vrtx.com/releasedetail.cfm?ReleaseID=560382 (Joy has the F508delta CF mutation mentioned in the three paragraphs beginning at the title: About the Cystic Fibrosis Transmembrane Conductance Regulator Protein). Please keep Joy’s health and a CF Cure in your prayers – prayers work!



Here's a picture of Joy and her softball team. She’s on her knee on the far right. The picture at the top of this post is the goat we watch being born at our friends' ranch where we meet for science each week. She got to name the goat Ruby, and our friends added a middle name. The goat is now named Ruby Joy. Joy's friend jokes that it is Joy's goat that just lives with them.

Winter Blahs

We are enjoying some snowy fun and relaxation in Northern Arizona this week. So, I finally have a chance to update you all on our lives.

Joy has had a difficult time with viruses, asthma, and sinus infections since mid January. The excess rain in Phoenix has made our typically brown hills quite green with allergens. Her allergy symptoms have provided fertile grounds for viruses to take hold, and there have been quite an abundance of virulent ones going around. Each of her two viruses caused too much thick, sticky mucus for her sinuses to clear out before becoming infected. She therefore is finishing her second round of oral antibiotics in three months. After two years of extraordinary health, this has been a frustrating season for her. She forgot what it was like to be cooped up and kept away from friends for any length of time. Nonetheless, these illnesses have been so mild compared to what most people with CF face on a regular basis. I was reminded of that when I saw a boy younger than Joy hacking away while in the CF Clinic last week. Joy’s lungs have been mostly spared the buildup of excess congestion. I’ll take a sinus infection over bronchitis any day!

Joy is quickly becoming more mature. She is now 4’7” and growing about a HALF-inch every month (Joy just corrected me). She won’t be a child much longer and will be as tall or taller than me in no time. She has accepted her inevitable maturation with some regret, though she sure hopes it means a cell phone is in her not-too-distant future.

Joy continues to work hard at improving her fast-pitch softball skills, though she has given up on pitching due to the time commitment necessary. She is receiving top-notch coaching by a varsity coach with many championship pennants and a former player of one of those championship teams. Chuck has been assisting as much as they need him. Games resume in late March.

The CF Foundation is continuing to innovate and encourage. While the trial medication Joy tried has not yet come to market, this and other life extending medications are still being researched. The one we’re most excited about is: http://www.cff.org/aboutCFFoundation/NewsEvents/02-03-VX-809-Shows-Encouraging-Results-in-Phase2a.cfm (an oral medication that may circumvent the cell-wall defect of people with Joy’s mutation of CF).

While my business continues to support the CF Foundation, we are not walking in the end of April event this year. We will be out of town, and Joy has decided to participate in other charities. She worked hard to raise over $250 for an orphanage in Kenya, Africa by shooting a basketball 1,000 times in February. She will participate in a local “mission” in May and another in Northern Arizona’s Navajo Nation in September. Please consider sponsoring Joy in these ventures when the time comes. We’ll email you information as it becomes available.

Brief Update

We are doing fine. Joy is well, my eyes are better (lowering my pain level), and Chuck still has a stable job with Intel!

Here's a picture from our Labor Day Weekend camping trip in Northern Arizona.

Joy is playing softball again, and Chuck is the Assistant Coach again (wish I could help out more). One of my students is giving Joy some pitching instruction.

Joy's Physical Therapy is coming to an end. We'll see her doctor in October to confirm her progress and lack of a need for surgery on her Achilles Tendons.

Softball

Joy and Assistant Coach-Chuck had an enjoyable Softball season that ended with the girls playing as the most improved, second place team in the playoffs. Gooooo Storm!