Here's a photo of Denise at Disneyland, her first time with our kids. You can't see it very well, but her hair's coming in nicely (pinned back under Mickey Mouse ears) and is finally longer than my hair! Last year at this time, I doubted that Denise would survive a few more days. Look at where we are now!One year ago I had the worst birthday of my life. Late at night on September 17 2005, I received a call after a birthday gathering at our house from the hospital saying that Denise had suddenly taken a turn for the worst. That began one of the darkest periods in her hospital stay and precipitated the transfer to USC on September 29 2005. This year I had the best birthday of my life! On September 17, Denise took me to Disneyland for my birthday. This photo is actually from when we went again as a family a few days later (annual passports are awesome!).
I went back to work this month, and Gracie & Jacob are now both at preschool. What a huge blessing to be able to send the kids to the preschool next to the "big" school I work at! Denise, while gradually improving, isn't capable of staying at home alone with a kid (much less both) for the entire time that I'm at work. By having me and the kids out of the way, that lets her focus on her main job: getting better. And I can't adequately describe how wonderful it is to see her assuming her roles with being a wife, mommy, and holding down the fort again.
A typical day for Denise consists of getting up at the same time as me and the kids. We trade off getting kids ready & making breakfast. She kisses us all goodbye, gets herself ready, and goes off to the city's little gym to do her physical therapy on her own. We found out it was way cheaper to join the gym ($100/year) and check in with a physical therapist every month or so than going to a physical therapy appointment several times a week and paying all those office visit fees. She then paces herself, accomplishing a few tasks each day such as shopping for groceries, paying bills, making some calls, doing a load of laundry, water the lawn, etc. She's feeling good about being able to contribute to the family unit again, and I'm stoked to have her help again! It's also empowering for her to be able take care of some of her own medical-related calls and paperwork. She then has lunch, then it's rest time. She crashes, napping for 2-3 hours. After we come home from work/school, we enjoy some family time and Denise frequently prepares dinner without needing any help from me. Then it's KP duty, bath time, more family time, and kids to bed around 8pm. Denise crashes shortly after the kids. She really wanted to volunteer at my school and the preschool all the time. But she's found out that the stamina just isn't there yet. It's improving, though. So in the mean time, she signed up to be a room mom assistant for Gracie's class. She plans to come in to do special things for Jacob's class as her energy returns, too.
Medical mumbo-jumbo, Lab results:
Based on what I heard at last month's Valley Fever Symposium at Stanford, we have requested an MRI and lumbar puncture. From what we learned, both of these should be performed with some regularity so that increased cocci activity can be detected early enough to take appropriate medical action and extend survivability.
Denise had a very important lab draw in September. While we're still awaiting the results of her titers that measure the concentration of cocci in her system, we got some great news. Get a load of this:
Liver enzymes:
SGOT 28 (within normal), down from 42 in August!
SGPT 36 (within normal), down from 60 in August!
Alk Phos 230, down from 235 in August. Normal is 20-125, but that's WAY down from June when it was at 353. So the trend continues to march toward normal.
Kidney function:
Creatinine is 0.8 (normal is 0.5-1.2). Amazing, considering she had kidney failure twice, she was on dialysis a year ago and we were expecting it to be that way for the rest of her life, IF she survived.
CBC:
All her blood lab results are in normal! Her hemoglobin even went up to 14.1 (normal is 11.7-15.5), so she's definitely not anemic.
Since the liver labs were being used an indicator of cocci status, and since the liver labs are improving, I'm optimistic about the results of the titers that we haven't seen yet.
On deck for the coming month is plastic surgery on Denise's trach scar on October 5th. Also we have important appointments with her infectious disease doctor and her neurologist October 10th. Hopefully there will be nothing of concern to post from those events, allowing us to wait until the end of the month for the next post.
