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!

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Merry Christmas to All, and to All a . . . Happy New Year!

The close of 2007 is almost upon us, but as well the new beginnings of 2008 are around the corner. A new year to make new strides of improvement with our cattle and with ourselves. For me it has been one of the longest years I've lived in perhaps the last decade of my life. That may seem an odd thing to say, but it seems to me that the events of a given year in our lives sometimes have a sort of rush about them, or sometimes an agonizing delay.

I lost my Mom in early October, and I want to thank every one for the kind words of sympathy, and I pray and believe she is in God's Loving Care now and the stresses of the world are behind her. I also lost a cousin this summer and now this past week it seems I've lost my dog, Gabbie, who was a joy to be around, always a happy girl. She looks somewhat like a coyote, and I found out yesterday that many are being found around deer stands shot dead in their tracks. While I understand the need to control the population, I'm not so sure I agree anymore with this tactic.

I had the opportunity to see a humanely captured coyote napping in a trap in the back of a pickup yesterday. It will be taken to a hunting dog operation for use in training. I hope my Gabbie somehow has shared that same fate and someone will realize that she is a good dog, not a killing coyote. At the same time, I wonder, and perhaps hope just a bit, maybe hope really a whole lot, that the loss of Gabbie is my number '3' for this string of deaths in my family, and all will be well with those I love for many years to come.

That's an old saying I grew up with -- that death comes in threes. But I hope Gabbie is alive and well, and her disappearance is enough to count as my family's number '3'.

We had a really great annual meeting at Halliburton Farms in Bells this past month. Amazingly, a large number of people travelled great distances to attend. I don't think they were at all disappointed, and the level of enthusiasm and interest in the breed was contagious and heartening.

The speakers were both excellent and the attendees listened raptly and with great interest in their discussion. Perhaps best of all, everyone there got a bursting full large bag of what look to be perfect pecans from Morris and Jean Halliburton's very old and very prolific pecan trees. Lucky for me, Mike won the bidding as well on two bags of shelled ones which we are quite enjoying.

Not to be left out is the excellent catfish prepared by Morris' family. I could have eaten plate after plate if I'd just shut up long enough -- but the conversation was good and those who know me, know I get started talking and sort of lose all track of time and awareness of what's around -- though I did get a last piece from Dan Herrell sitting next to me -- sharing good catfish is something I consider tops on my list of good people traits.

Fortunately, Dan also let me have a warm cap he had extra with him, and on Sunday morning it was firmly on my head keeping me warm and dry as the sky fell out with a pounding rain and the air cooled down to high 30's, if not lower. Brrr. . . it was surely cold. Thanks Dan, and thanks to everyone who made the meeting a memorable one for all.

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O'Naihanchi Kata Sho (Iron Horse Missing Enemy Form)

The origin of the three Naihanchi katas is unknown. We do know for a fact that they were practiced as one single kata by Okinawan Shuri-ryu Master Sokon Matsumura around 1825. Naihanchi was, however, handed down to Matsumura from earlier times. We can assume that Naihanchi is well over one hundred and seventy years old, possibly dating back to the era of Tode Sakugawa, Suekata Chogun and Ito Gusukuma. Naihanchi was also a favorite form of Yusutsune Itosu (1830-1915).

Around 1895, Master Choki Motobu popularized Naihanchi by performing the three forms as “one kata” on a daily basis at least five hundred times. The three Naihanchi katas, performed as one became known as “Motobu’s Kata”, and he is said to have stated many times, “ There is only one kata necessary to develop and excel in Karate, and that is Naihanchi as one. Motobu’s favorite hand form when performing Naihanchi was the forefinger punch (keiko ken zuki).”

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Not Good News for Turkey Day

H5N1 confirmed at second U.K. site

By Alicia Karapetian on 11/20/2007 for Meatingplace.com

British officials on Monday announced that testing confirmed an outbreak of highly pathogenic avian influenza in turkeys at a second site in the United Kingdom.

The outbreak occurred at a farm deemed a "dangerous contact" premise, which was placed under restriction following the first outbreak last week. (See British AI outbreak highly pathogenic strain: official on Meatingplace.com, Nov. 14, 2007.)

Officials on Saturday completed the culling of birds on the first infected farm and those placed under restriction.

An almost 2-mile protection zone has been established around the second site, and the existing surveillance zone has been extended.




British AI outbreak highly pathogenic strain: official
By Alicia Karapetian on 11/14/2007 for Meatingplace.com


British government officials on Tuesday announced that confirmatory tests showed an avian influenza outbreak on a turkey farm in eastern England was the highly pathogenic H5N1 strain.

In response, the some 5,000 turkeys, 1,000 ducks and 400 geese on the farm will be culled, Secretary of State for Environment, Food and Rural Affairs Hilary Benn told British Parliament in prepared remarks Tuesday.

"The health and safety of those involved in the operations are the priority, and a strict approach is being taken," she said. "All workers on the premises already potentially exposed to infection have been given Tamiflu."

The government also has restricted poultry movement, instituting an almost 2-mile protection zone and an approximately 6-mile-wide surveillance area.

Benn's department was informed of a large number of turkey deaths at the farm Sunday. Preliminary tests conducted Monday showed the presence of the H5 strain, and further testing, which revealed the strain was H5N1, was completed Tuesday.

The United Kingdom last faced an outbreak of highly pathogenic avian influenza in February when 159,000 turkeys were culled at a Bernard Matthews farm.

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Check out this Day-After-Thanksgiving Stew Recipe

This sounds like an really tasty recipe for a Mexican style beef stew provided this week to National Cattlemen's Beef Association members. Check out those ingredients and add them to your grocery list, sounds like a winning combination of seasonings. For the less adventurous, a good old-fashioned soup bowl should work just fine. . . .

Easy Day-After-Thanksgiving Stew

Wondering what to serve the day after Thanksgiving to a houseful of hungry family looking for an encore? Whip up hearty Mexican Beef Stew to satisfy those day-after stomach grumblings!

Mexican Beef Soup in Tortilla Bowls

Prep time: 25 minutes
Ingredients:
1-1/2 pounds lean ground beef
1 large onion, cut lengthwise in half and cut crosswise into thin slices
1 tablespoon ground cumin
1/4 teaspoon pepper
2 cans (10-1/2 ounces each) beef consomm�
1 can (15-1/4 ounces) whole kernel corn, drained
1 can (10 ounces) diced tomatoes with green chilies, undrained
1 cup water
6 medium (8 inches) flour tortillas
2 tablespoons chopped fresh cilantro

Instructions:

Heat Dutch oven or large saucepan over medium heat until hot. Add ground beef and onion; brown 4 to 5 minutes, breaking beef up into 3/4-inch crumbles. Pour off drippings. Season beef with cumin and pepper.
Stir consomm�, corn, tomatoes and water into beef. Bring to a boil; reduce heat to low. Simmer, uncovered, 10 minutes.
Meanwhile gently press tortillas into 6 individual microwave-safe (2-cup) soup bowls. Microwave, 3 bowls at a time, on HIGH 5 to 6 minutes or until tortillas are slightly crisp, rotating and rearranging cups halfway.
Stir cilantro into soup; spoon soup into tortilla bowls. Garnish as desired; serve immediately.

Makes 6 servings.

Nutrition information per serving: 478 calories; 19 g fat (6 g saturated fat; 8 g monounsaturated fat); 76 mg cholesterol; 1102 mg sodium; 40 g carbohydrate; 2.6 g fiber; 34 g protein; 5.6 mg niacin; 0.4 mg vitamin B6; 2.4 mcg vitamin B12; 4.6 mg iron; 20.8 mcg selenium; 5.8 mg zinc

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Yoi - To Be Prepared Is To Be Motivated

Often when you watch a karate tournament you will notice in the sparring segments that the competitors with the superior techniques are not always the ones who win the matches. A competitor who receives a minor injury during a match, for example, will suddenly become hesitant to attack, and, in spite of possessing superior skills, may lose even if the physical effects of the injury were negligible. Similarly, an exceptionally aggressive competitor can win more than his or her fair share of matches just relying on this trait alone.

This illustrates how matches can often be won or lost even before the competitors enter the ring. We are all aware of the importance of training hard and practicing our techniques before competition, but we sometimes forget a crucial aspect of our preparation: motivation, or the will to win.

The importance of motivation in preparing for any activity is illustrated by the Japanese word yoi, which means “ready.” The first ideogram, yo, means “use” or “utilize,” while the second, i, means “will” or “motivation.” To be prepared is to be motivated.

There is a well-known aspect of karate training in which the proper preparation of your will and motivation are crucial for success. Success does, however, require firm belief that your chosen goal is attainable. A shred of doubt will keep you from success, but if you firmly grasp an unshakable belief that you can do it, then you will reach your goals.

- Adapted from "The Empty Hand: A Karate Workbook" by Rui Umezawa

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August & September 2007: Video, Cocci vaccine, Neuro appt.

We've put together a photo slide show to document Denise's hospital stay & recovery. Just a warning, a couple of the pictures are hard to look at. I tried to only post uplifting pictures of Denise during her struggle. But Denise wanted you to see just how bad things were for her: in a medically-induced coma, holding baby Daniel's lifeless body, hoses, wires, vents, machines, feeding tubes, catheters, fevers, trach, hair loss, weight loss, scars, exhaustion & everything else. That way it would underscore just how blessed we are that she not only survived, but is getting better with time.

Denise visited the neurologist in late August. He was pleased to see that she's continued without seizures, lapses in consciousness, manic episodes, tremors, or anything else. I'd hoped that he would lower her anti seizure or other meds, but he's keeping her at the same level. Denise will have labs done up and visit the infectious disease doctor in late October. The last labs showed her titers for cocci going another notch toward normal, and her liver labs came back normal. So I am hopeful that we'll hear more good news.

A couple weeks ago I flew to Phoenix (cocci central) & back in one day to hear a talk by Dr. Garry T. Cole of the University of Texas, San Antonio. He's working on a vaccine for Valley Fever. I felt kind of bad for him because the talk was not very well-attended. But that worked in my favor, as he took a great deal of time to talk to me about his work (and nice guy that he is, he used little words as much as he could so that I'd understand). Anyway, I thought he'd be talking about Nikkomycin Z, the anti fungal that might be the magic bullet in killing cocci, not just suppressing it. But his work is completely different. Leave it to a guy like me to mix up a cure project with a vaccine project. In a nutshell, it seems that a vaccine is workable. They've nailed down which phase of cocci development from which to start (killed spherule, not arthroconidia), the specific component of the spherule from which to derive the vaccine (actually, a protein on the spherule wall, if I understood correctly), and they've got some very encouraging results from testing on mice. All they need is money. He brought up the tremendous rate of infection among military personnel that train in cocci-endemic regions. He also brought up the costs associated with their treatment, downtime, disability payments, and in the worst cases, benefit payments to their survivors. It's possible that the Army and/or Marines might back the cocci vaccine out of pocketbook concerns if nothing else.
Here's a short (though technical) intro to Dr. Cole's work: http://bio.utsa.edu/faculty/cole.html

And for non-medical stuff, Denise continues to bite off a little more as time goes by. She's been able to stay awake longer during the days as her endurance comes back. Gracie started kindergarten. Jacob goes to preschool and stays home with Denise one day a week. She'd like to increase it to two days a week as she's able to catch up on the time she missed with him while she was in the hospital (she went in when he was 15 months old, came out when he was about 24 months old... about a third of his life later). She's also been getting more involved at the school as she's able, started connecting with other moms through a M.O.P.S. (Mothers of Preschoolers) at church, and doing a little bit with Door of Hope, a Pasadena ministry to help homeless families. And for my birthday, we went to Disneyland and ate at Goofy's Kitchen. Yes, I am the biggest kid in my family.

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June & July 2007: Titer down to 1:2-4, Liver normal

Denise's appointment with the infectious disease doctor was loaded with news that put smiles on our faces. Her liver labs all came back within normal... even the Alk Phos! Considering that she had complete liver failure & was yellow in the hospital two years ago, and had what is suspected to be cocci-caused granulomas in the liver last year, this is amazing! Better yet, the cocci titers came back from U.C. Davis at 1:2-4, lower than the 1:8-10 that we heard about six months ago. So things are progressing nicely. Her next test will be in October, as will the next visit to the I.D. doctor. Denise is trying the South Beach diet and feels like it's helping get her back to her pre-illness weight and reduced the ab swelling (recent scans show no ascites, indicating no presence of infection). So we're relieved to have some grasp of how to cope with the onset of the GI-related problems since she came down with Valley Fever.

This summer has been so much better than two summers ago (when Denise was in a coma) and last summer (when she was doing so much rehab). I got off work for the summer in June and life's been good! My school honored me by dedicating this year's yearbook to me, and they also had wonderful things to say about Denise continuing to heal & thrive as a testimony to God's mercy (not to mention the hard work of the medical teams). We gave Jacob his summer haircut (mohawk). We went to court for the first time ever (and hopefully the last). It was just small claims court, and it was surprisingly low stress... nothing like Judge Judy. We went to Disneyland and were treated to a night at the Disneyland Hotel (the kids loved the Peter Pan-inspired swimming pool there). We went to visit Denise's sister & brother-in-law in Montana for a few weeks (this picture of Denise was taken in Philipsburg MT). We crammed in a lot of first-time activities for the kids: a visit to Yellowstone, fishing, horseback riding, driving a boat, going to a dirt track car race, and Gracie even learned how to shoot a rifle and took horseback riding lessons. I tried wakeboarding (I'm exactly as unsuccessful at that as I am at water skiing). And we celebrated our 10th anniversary in July. A couple years ago, I didn't think that we'd make it to this point, but I sure am grateful that we're here!

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June & July 2007 update

On this date two years ago, July 18 2005, Denise went into the hospital and our lives changed.
There's so much good stuff to write about from June & this month... but we're in summer vacation mode, so I'm going to be a little bit lazy and post the happenings from June & July at the end of July.

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May 2007: Ab distension, Weaning off seizure meds

The tall guy with Denise in this picture is a parent from my school that works at USC University Hospital. He initiated Denise's move there during one of the times that we thought we'd lose her (the post for September 27, 2005 has those details). Our school had a fundraiser dinner, and he was there. He hadn't seen Denise for almost a year and was glad to see how much she has improved. He's one of our medical pro heroes, along with the other people pictured in the January 2007 post. Personally, I think that Topps should maket trading cards of all these people.

We paid a visit to the GI doctor this month. A couple of the most frustrating things for Denise has been the change in body shape and the slowing of the GI tract (she was described as being a "GI cripple" at one point during her ordeal). Several times, people have "congratulated" Denise on being pregnant, or asked when she's due. So over & over, Denise has had to explain that she's not pregnant, we can't have any more kids, she's just shaped this way due to secondary issues from the cocci infection, etc. etc. etc. She knows that people certainly mean well, but having lost baby Daniel during her ordeal in the hospital, painful issues get brought up over & over. So it's not just the physical that's frustrating; it's the emotional as well. Anyway, we already found out from the neurologist that the Risperdal that she was on causes increased appetite (this was handy when Denise weighed 87 pounds. Denise prefers the Abilify that replaced the Risperdal, by the way... she seems to have more energy. We also learned that the Trileptal slows metabolism (anti-seizure med). So we hope that the combo of switching to Abilify and weaning off of Trileptal (more on that below) will ease the abdominal distension.

The lab results from tests ordered by the GI doctor showed no thyroid problem (he suspected there was a thyroid problem, and we're requesting a visit with an endocrinologist next). He's suspecting that the stress of what she went through, and the duration of it all, caused excess cortisone in her system. My limited understanding is that this would slow everything down (GI tract, metabolism, everything). The good news is that things can apparently return back to normal over time. In the mean time, Denise has tried two meds to help stimulate her GI tract into working regularly, and they seem to work on & off.

She's been seizure-free for well over a year now, and the neurologist told us to cut Denise's already low Trileptal dose to half of what she was on and try to get her off of it. She went down one week ago tonight, and it takes a while to get it out of her system. So I'm supposed to keep an eye on her to see if she spaces out, stares, etc. No problems so far. Of course, this presents a slight inconvenience, as someone needs to be with her for a while while driving for a couple weeks. But I'm off for the summer soon, so the timing's great.

Next month she gets a fluorescein angioplasty of the eyes to determine in great detail what the status of the scarring is in her eyes. This will be done by the doctor that's familiar with cocci that I wrote about in the last post. We also have an appointment with the infectious disease doctor, the psychoneurologist, and a checkup of the trach scar.

I went to a funeral for a great uncle this month. I remember him most from when I was much younger, when we'd see extended family at gatherings every couple years. He was a neat guy, and funny (during the eulogy it was stated that if he were with us and saw anyone sad & somber, he'd have said, "Knock it off!"). So I was looking at the casket and started choking up. Then I transferred what was happening (his funeral) to what what could've happened to Denise. I was thinking of how close Denise was to being in that casket. Then I really started choking up. Fortunately, there was no booming voice telling me "Knock it off!" Anyway, I got home even more excited than usual to see my wife. I'm really looking forward to this summer when school gets out. After spending summer 2005 at the hospital, and spending summer 2006 doing the tail end of rehab, we're really looking forward to a "normal" summer now.

At church we happened to plop down next to this wonderful family. We didn't recognize them, but they recognized Denise. They were keeping on top of her situation from the very beginning, before this blog was even started. How? They've got connections to Arcadia Methodist Hospital where the journey began. It even turns out that a sister (in-law?) was one of the pharmacists that provided Denise's meds to the ICU. Small world!

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April 2007: Retinology appointment, Switch meds

Denise turned 34 this month, and to celebrate we went to the Napa Rose restaurant at Disneyland (sorry about the grainy camera phone picture). The food was stellar, as was our company (a really neat brother & sister; the brother had a long hospital stay after a nasty accident, and the family set up a blog). But the best part was getting to spend a special birthday evening with my 34-year-old wife, whom we thought we were going to lose at age 32. I'm one blessed man!

Here are the developments from this month...
We had an appointment with a retinologist that's new to the office we've been going to, but he was quite familiar with cocci and the effects that it can have on vision. Bonus: Other doctors that have patients with cocci-related vision damage seek his opinion! So we're confident that we have the right guy. He found that the optic nerve is no longer swollen (indicating that there is no infection), however there is still retinal scarring. In spite of that, Denise's vision has improved! Where there used to be an area of darkness (the cocci caused her to go partially blind in one eye), now there's just an area of slight blurring. We have to go back again for a fluorescein angioplasty so he can really take a look at what's going on with her eyes.
We paid a visit to a doctor that a friend from the kids' preschool recommended. He switched out the Risperdal in favor of Abilify (it's for a different primary condition, but he thought it would benefit Denise). She likes it so far and has felt more energetic (Risperdal causes drowsiness), no signs of manic behavior, no signs of seizure. The new med doesn't have the effects of increased appetite & slowing the metabolism. She's all excited about starting to return to her pre-illness weight. Just tonight she showed me how her pants are starting to fit loose and sag. I'm tempted to ask the doctor for a prescription for myself. :O) The doctor that had Denise try the Abilify also thought that she could eventually go off of that and the anti-seizure med as well, since they're both in such low doses. So we'll see what happens.
On a sad note, my dad died a year ago on the 18th of April. Easter was a little difficult for me this time, more than Christmas or Thanksgiving for some reason. My guess is that it's because in my mind, his passing revolved around Easter last year. I drove him to the hospital going into Easter weekend and we lost him two days after Easter. Time heals.
Ending on a lighter note, Denise's blog crossed the 130,000 hits mark in April! I'm glad that the hits have slowed down... things are normalizing and there's just not as much reason for anyone to check this blog frequently anymore. I'm also glad that the hits still trickle in... thanks for caring enough to check up once in a while.

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March 2007 Update: Cocci Study

We participated in a 3 mile ABI (acquired brain injury) awareness walk this month, and here's a picture of Denise cooling down with the kids. Months ago I was put into contact with a man whose wife was hit by a car in September and is ever so slowly recovering in the hospital. Meanwhile, he's trying to maintain some normalcy... grappling with balancing caring for her, keeping up with work, and raising a daughter & son that desperately want mom back home. Sound familiar?

Last month the neuro doctor said to try lowering the already very low dose of Risperdal. That didn’t work well, as we had some issues and Denise had a very bad day that required me to leave work. She went back to the previous level and things evened out. So we'll look into trying something different in hopes of finding the right meds and the right timing.
My nurse aunt & I went to Phoenix AZ for the "Cocci Study Group." It was incredibly informative! We had access to the best of the best in cocci research and treatment. Several doctors took the time to hear our concerns and offer advice and encouragement. After having gone to the cocci symposium at Stanford in August, I felt much better-prepared going into this meeting. We found out that there is one other case of a pregnant woman with cocci in the brain. In her case, she did have a baby (born at 8 months gestation) and has been out of the hospital for about 5 months. I don't think her situation was as grave as Denise's. Still, it's remarkable that she survived with cocci in the brain. We also heard of a case where a man contracted Valley Fever without living in or visiting a cocci-endemic region. He purchased a vehicle from a cocci-endemic region and had it delivered to his home. The dust in the vehicle (and in the AC ducts) contained cocci, and that made him ill. I could make this quite a long post if I were to relate everything that I learned (and I only understood a small fraction of what they were saying). One very helpful doctor commended me on jumping in to learn about cocci. He said it's not one of the simpler organisms, nor a simple disease to understand. So that made me feel less stupid.
The high point of the weekend for me was that in the restroom, the Grand Poobah of cocci research chose the urinal next to mine in which to pee. Wow!

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February 2007 Update: Brain damage healing

A big milestone for Denise is that we did some swing dancing at a friend’s house. Denise exhibited incredible balance and coordination. Dancing for her is like riding a bike for most people… once it’s learned, it’s never forgotten.
I, on the other hand, was as lame as ever, but still had a great time dancing with her!

Super news in the brain damage department! The most recent MRI showed only “one punctate lesion” (that’s one point of damage that lit up). The MRI before this one showed multiple lesions. So that means that things are healing! I must admit that part of me wants another MRI, just to be sure. It seems too good to be true!
The February cocci titer came back “negative” for cocci, but it wasn’t sent to the usual lab at U.C. Davis. My school changed insurance companies beginning in February, and getting the cocci tests to be handled by the preferred lab is one of the small issues to work out. The I.D. doctor said that the lab that handled the most recent titer isn’t as sophisticated. We think that we have everything straightened out now, though. Cerebral spinal fluid is still negative for cocci.
Liver: alk phos is at 158. That’s down from where it was last time, and another notch toward normal.
Denise feels like her vision is improving (she’s partially blind in one eye from the cocci). We’re going to get her to a retinologist to see if the eye lesions have resolved and have a look at the optic nerve (it was swollen about a year ago at the last exam).
She’s been having ab swelling and we’ve been advised to pay a visit to the gastrointerologist again. The change in body shape has been very frustrating for Denise. She’s been doing aerobics and eating healthy, but it’s been hard to get back to her normal pre-illness weight. The neuro meds she’s on can cause weight gain by changing metabolism and increasing appetite. This was helpful when she couldn’t hold food down and weighed in at 83 pounds, but she says it’s getting a little old now.
The neurologist wants us to try lowering the Risperdal again. Denise’s on such a low dose, she almost might as well not be on it at all. But the last few times we've gone lower, we felt the need to go back to the current level again. Denise would rather be off of this med, as it also can make her pretty tired. Once the Risperdal is gone, the only other med to ween off of is the Trileptal (and Denise has been seizure-free for almost a year!).

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January 2007 Update: No cocci in CSF, liver normal

We're having a very Happy New Year so far and hope to have many more!
During my school’s Christmas break, we paid visits to Methodist Hospital in Arcadia and to the office of Denise’s doctor from USC. These two guys called the shots that pulled Denise back from death over & over again. They seemed about as happy as I am to see Denise alive & well. And below are pics that include just some of the people that were on the teams that worked so hard for Denise (some of these pics are from before our Christmas vacation visit, and this web site doesn't have the capacity to let me post all the pictures I wanted to upload). We hope to make it by USC University Hospital and Huntington Hospital to thank the crews there as well.

Visits to the specialists have been fewer and farther between as time goes on. This month, there were no appointments. We’re glad for that.
Last month’s visits to the specialists were loaded with good news! The cocci titer came in at 1:16. No evidence of cocci was detectable in the cerebral spinal fluid. Liver enzymes were normal (amazing, considering how bad her liver function was). Denise had an MRI to see if the damage to her brain has healed over the last year or so. We’ll get results during next month’s appointments. Lexapro was discontinued (antidepressant, neither Denise nor I thought she needed it, but neurologist thought it’d be good to have her on a low dose, just in case).

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