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.

Healthy

Just thought everyone would like to know that Joy had a great doctor visit yesterday! Her lung-function results were better than all her visits over the past 12 months, and her allergy symptoms are greatly decreased. Also, her Physical Therapist indicated she is close to completing her treatment on her legs.

I, on the other hand, have been in an increased state of pain for over four months. Between vision problems and a new treatment regime for Fibromyalgia, I feel like someone his holding and twisting my spine at my neck and mid-back (headaches and the rest other body-wide pains have also increased). I’m praying some new glasses will decrease some of my pain. Please pray they’ll come soon!

No Eye Surgery!

Yippeeee, the Corneal Specialist I saw today sees no reason to do another surgery at this time!!! There is so minimal, inactive regrowth that there won't even be a reason to continue steroid eye drops. Happy Birthday to ME!

Also, big news today, Joy passed her summer math class. She is now ready for 8TH GRADE MATH, but she's only going into 5th grade.

-- Here's another Sedona Pic -->

Camp and Travels

Joy enjoyed her Church Camp experience, and I survived five nights not knowing how she was doing. She seems no worse for the wear.

We had back-to-back trips, so I was very stressed out making sure she had every medication and piece of medical equipment she needed. We camped with our Life Group Friday through Sunday, then dropped Joy off at camp Sunday afternoon. We then picked her up Friday morning and headed for Sedona, Arizona, where we are now. We have been hiking, swimming, and reconnecting as a family for a week. Joy and Chuck went mountain biking as well. This is a picture of our rock-climber, Joy. She seems to have no fear this year, which really caused her parents to fear her getting close to the edge of any overlook.

We're heading back home soon -- back to the Phoenix heat! I will have a couple appointments with Ophthalmic surgeons the week we return. My left eye is unable to be corrected with glasses again. It's possible they may suggest another surgery. My left eye had the same surgery twice before: Pterygium removal. My right eye needed only one surgery. Needless to say, I'm more than discouraged. Your prayers are coveted!

Health and Summer Activities

Joy has been doing well, though her health was a bit better when she was on the experimental medication, Denufosol, last year (we look forward to this and even better medications becoming available soon). She recovered from a pretty strong virus recently without any complications to her lungs. For all Joy's life, we have struggled to keep enough calories in Joy. However, she's been so healthy over the past couple years she now has a couple pounds she needs to grow into. (Respiratory infections really burn a lot of calories, so patients with CF are usually too skinny)!

Joy is experiencing somewhat of a traditional school day this summer. She has a math class all morning, then art all afternoon. She is at a local high school from 7:30 am to 3:30 pm Monday through Thursday. While she enjoys being with her best friend all that time, the schedule has been pretty stressful. Her extracurriculars have been reduced, but she still doesn't seem to have as much free time as she is accustomed to having.

Before taking a break from Karate, Joy earned her purple belt (one belt away from a brown belt). Piano has been put on hold this month as well, although she has thoroughly enjoyed learning, practicing, and performing on the piano in the past. Summer basketball has begun, though. Chuck is the head coach of her team. As the only girl on this co-ed recreational team, Joy had a tough time convincing her teammates that she could play just as well as most of them. However, she is certainly earning their respect. Joy will be attending her first sleep-away camp next week. While Ann was worried about Joy's medical treatments being well managed at camp, there is a church volunteer who has offered to monitor Joy's daily regime. So now the only concern is to get all of her equipment properly packed and labeled. Last on the list of Joy's activities, Joy has been going through physical therapy due to shortened Achilles Tendons in both of her legs (she often can't help but walk on her toes). Her orthopedic surgeon has warned her that surgery is the next step if she doesn't faithfully complete her exercises and treatment regime over the next three months.

With all that's going on, please keep Joy in your prayers!