Merry Christmas! Oct, Nov, Dec 2007 Updates

Merry Christmas! As you can see from our family photo, Denise continues to heal nicely. Compare this photo to these December 2005 photos (you'll have to scroll way down), or watch the slide show that's in the previous post below. With progress like that, who needs to make up a wish list? Jacob's face shines with pride, as he's only three, but can ride a two-wheeler playground bike (and lets everybody know it). Gracie has a big smile even though she's all done with horseback riding lessons until we can save up for a few more next spring or summer. And the photographer caught me in half-smile mode (we're migrating to Windows Vista at work). Before the nice medical news, here's a funny Christmas-related story. Gracie's kindergarten class talked about "making healthy choices" during Red Ribbon (drug awareness) week at school. So she thought that since Santa is overweight, we shouldn't leave him cookies on Christmas eve. Instead, we should leave "ants on a log" (celery with peanut butter & raisins). Then a few weeks later she told me that maybe "ants on a log" wasn't a good idea because Santa might be allergic to peanuts & peanut butter. So she concocted the idea of "ants on a snowy log" that would substitute cream cheese for the peanut butter. Nasty. But at least she didn't think of using tofu.

Some milestones from the past three months:

• Denise & I spoke at one of my school's Parent Teacher Fellowship meeting and presented her slide show on the big screen.
• We also shared our experience and the slide show at a friend's church (literally... it was Alhambra Friends Church... that's a code-word for Quaker). Denise still hasn't plowed through all of this blog. But when we're done with that task, we'll share at our church, too.
• During a checkup of Denise's trach scar, the plastic surgeon noted that not only did the appearance of the scar improve, but Denise's abdominal swelling had gone down. Then in checking that out, he found that she's got a hernia. After what she's been through, we're not too alarmed.
• The infectious disease doctor told us that the blood & liver labs were all within normal ranges, and titers for cocci antibodies came in at less than 1:2 (prior it was between 1:2 and 1:4), but once again the lab folks ignored the notes on the paperwork and the labs did not go to U.C. Davis, where the tests are more sensitive. So the doctor is going to go to bat for us next time in January to make sure the labs get sent to the right place for testing. If that titer also comes back favorable, he's considering changing from voriconazole (Vfend) back to fluconazole (Diflucan). When Denise was having some setbacks on March 11, 2006, there were questions about whether her problems were caused by withdrawal from Reglan or by not tolerating Diflucan. They switched her to Vfend and we never did find out what caused the problems. But now that she's doing so well, she might go back to Diflucan and the ID doctor will keep a VERY close eye on her cocci labs. Going back to Diflucan would save us a significant amount of money each month, and Denise wouldn't be so sensitive to sunlight (Vfend puts her at increased risk of getting a specific type of skin cancer).
• The retinologist hasn't gotten back to us yet, but didn't find anything new to report during the appointment. Denise copes with her vision problems well, though these short winter nights and increased nighttime driving have made her aware that her night vision isn't what it used to be. So driving at night isn't her favorite thing to do right now.
• The neurologist thought Denise was doing well and plans to take her off of her low dose of anti-seizure med Trileptal after the holidays. She continues to do well on the "almost negligable" dose of Abilify (to combat the manic phases that crept up as a result of the cocci going to the brain). It is possible that, if she continues without any problems, that she could discontinue that med as well. She's happy that it doesn't cause the weight gain, like her last med did. In fact, as mentioned above, she's been losing weight at a slow, stable, healthy rate over these past months. So both in mood and physical appearance, she's returning to her pre-illness self. Before her next appointment in June 2008, she should have another spinal tap (to check for presence of cocci antibodies in CSF) & brain scan (to check status of brain lesions, particularly calcification of the basal ganglia). Last, he recommended a hearing screening to determine what is causing the instances when Denise feels that she's misunderstood what people have said or people can't get her attention, which can be embarrassing & stressful to her. Is it hearing, or some processing or state of consciousness problem that's crept up since her illness?
  
• Testing started in September on the drug Nikkomycin Z against Valley Fever. Other anti-cocci drugs only suppress the fungus. Nikkomycin Z has been shown to kill the fungus in mice, curing them of of the disease. Testing will start on humans out in the Tucson, AZ area. Here's an article: http://uanews.org/node/15940

Until next time, thanks for the the comments & emails, and thanks for caring!