Wednesday, July 15, 2009

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 -->

Monday, July 6, 2009

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!

Thursday, June 11, 2009

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!

Wednesday, June 3, 2009

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!

Blogging our History and Future

I have been keeping friends and family up-to-date on Joy's health status and important happenings in our life via websites since her birth and diagnosis of Cystic Fibrosis around 10 years ago. This has been an easier way to answer the common question, "So, how's she doing?" Now, I am entering the new age of "Blogging." Let me know how this medium works out for you.