Monday, June 12, 2006

Reception, Paracentesis, PCP, Neuro, Gastro Appts

Celebration of Life Reception for Denise Williams
That's the name my friends at school came up with, and I can't think of any more appropriate thing to call it. We sure hope you can come greet Denise over some punch & cookies on Saturday June 17, 2-4pm in the gym at Pasadena Christian School, 1515 N. Los Robles Ave. Pasadena CA 91104. Whether you know Denise well, have never met her before; whether you fit into the friend, family, neighbor, or medical pro category, we'd love to see you and say "thanks" in person for the part you played in getting her through to where she is now. If you haven't seen her for a few months, you will be amazed! Enough people have asked about where to send a card if they're too far away to make it to the reception, so here's an address:
Denise Williams 2328 Oakhaven Drive, Duarte CA 91010

Physical progress
Denise is back to her normal weight, and her strength, balance & endurance are markedly better as each week goes by. She sometimes has a "tired" day, but I think she deserves some slack, right? She's regularly been able to bathe herself, clean her own wounds, prep meals, and many other things. Reading is spotty, but she was able to address thank you notes from Jacob's birthday party. It's wonderful to see her able to increasingly accomplish things on her own, relying on her caregiver less and less. She's not at the point that she should be alone with kids yet and it's difficult for her to do many cleaning tasks (and so her caregiver is our saving grace over & over). But the great thing is that even though the kids will both be home for summer (no pre-K, no day care), I'll be done with teaching in a couple days and home for the summer to help. Then in September, both kids will be in preschool. I can't believe how much progress Denise has made since coming home about two months ago. I can't imagine the progress that she might make over the two & a half months of summer. I remember being told back in September that I need to be her biggest cheerleader, pointing out every accomplishment and getting her to buy into the notion that she could survive. I'm still playing the cheerleader, and am so thankful that now it's in the much more positive context of getting back to normal, not just fighting to pull through.

Appointments on deck
It's a big week for appointments. She goes this afternoon for a paracentesis to draw fluid off of her abdomen (first time in months). We think it's been ever so gradually diminishing. It should be interesting to see what happens after this fluid draw. Then later this afternoon she visits her PCP (primary care physician) for a status check.
Tuesday she has an appointment with the neurologist. He remarked during the last visit about how much Denise had improved since the prior visit and reduced one of her meds by 50%, giving us instructions to give the other 50% if we see manic (interpreted to be pre-seizure) behavior. I didn't see anything as blatant as what I'd seen before. But the caregiver and I have noticed some slight behavior changes that seem to correlate with the change in meds. Part of me wonders how much of this is just Denise getting stronger, wanting to take on the world after being down for so long, less doped up on meds, and getting back to normal. Another part of me is wondering if some of the behaviors are things that meds could help to even out (not for my convenience, but for her functionality & happiness). And if that's the case, what is a reasonable balance between being oneself, free of meds, and being medicated but not having all of one's own personality? I'm not one to want to throw medication at every physical or emotional difficulty that comes along. But I do wonder (and I'm sure Denise wonders about me). :O)
Friday she has an appointment with the GI doctor. I was going to post the info from her last appointment, but it was (and is) still filled with speculation until the latest liver labs come back. The GI doctor and ID doctor probably need to huddle first, then I can post some specifics. The info from the GI doctor was just relating to what can be done in the event that the cocci goes on the move again and is manifested through liver trouble. I've received a few more emails asking why Denise isn't going to an actual hepatologist for liver things. Apparently the gastro and liver problems and functions could be interrelated. According to liver lab results, her liver function bounces around, but is within an acceptable range. If things get worse, then a liver guy will come into the picture. Until then, the GI doctor seems to be well-versed to deal with Denise's level of liver function.

Thanks, Seminar, Politics, Potty Training
Thanks for the tremendous response to the last post. We were given a mattress by someone from my parents' insurance company (give the good folks at Tom Romano State Farm in Alhambra CA a chance if you're in the market). People came out of the woodwork to offer help for Denise's reception (there's always room for more cookies, if you want to bring any). And here's a shy but heartfelt thank you for the swell in contributions to Denise's fund. Also, thanks for all the help for Jacob's birthday party! We were even blessed to meet some brand new friends that have been following along for months. Thanks also for all the help with getting my mom's house ready to sell. Escrow should close later this month and she just moved into her retirement home last week. She'll get used to having someone else doing the cooking & cleaning sooner or later.
I'm planning on going to the 6th Annual Symposium on Valley Fever that's put on by U.C. San Diego, being held at Stanford University near the end of August. It's pitched toward medically-inclined folks. So I'll be way out of my league. Then again, its good to be a small fish in a big pond... it leaves room to grow. Hopefully some of the brilliance of the presenters will rub off on me.
I received a pretty neat email a while ago from a total stranger that had been following Denise's story. He said he feels like this blog has been better than a soap opera, was encouraged by my love for Denise (notta problem... she's easy to love), thought I did a great job of communicating, even being funny, under the stress, and really feels like he knows us. He wrote jokingly, "I just can't tell: Are you a Republican or a Democrat?" I had to chuckle. I wrote back that I shouldn't answer that one because I ran roughly a 50-50 chance of giving the wrong answer. Then I might all of a sudden become a jerk in his mind and possibly even lose his support for Denise (I say that with my tongue firmly planted in my cheek). Anyway, the reason why I thought his email was so neat was that it made me think of how many people from different backgrounds (I'm talking not only political, but faith, socio-economic, educational level, racial, age, mental & physical ability... on and on) have pulled for Denise together. It also encourages me that people perceive that Denise's situation is the obvious focus of this blog. It ain't about me. I'm just her publicist.
That said, let me tell you that Jacob has started potty training. School's end and Jacob's end are probably the biggest reasons for the long gap in blog posts. He's running around half the time with no pants on. Hopefully he'll outgrow that by the time he gets into a career. Anyway, the potty we have has a collection basin that's removable via a pull-out handle on the front. Whoever designed this thing didn't take rascals into consideration. A couple weeks ago, when I first sat Jacob on it, he pulled the basin out, THEN promptly relived himself. Messy floor. He did that trick again and again, gleefully, I might add. I was just about ready to get the duct tape out and tape the handle to the seat. Then he stopped for a couple weeks. Well, last night he started the pull-out-the-basin trick again. At church yesterday the sermon was talking about rest. Denise & I leaned over to each other: "Easy for him to preach about; he doesn't have preschoolers at still at home anymore!" Just think: Denise has been in the hospital for most of a year, and shortly after coming home, gets to help with potty training. Yup, she's assuming her role as mommy again. Things are getting back to normal.


Anonymous Anonymous said...

Praise for the "normal" things of life! Potty training! Keeps everyone grounded, doesn't it. Glad to hear Denise is continuing to improve and regain strength.

Please continue to keep us out-of-towners informed. I feel like distant family and relish the news of your family.

I agree with the gentleman's remarks concerning this blog and your contributions to it. I think a book is in the offing...that would help the Williams Family Fund!!!

Praise to God for His goodness, for his faithfulness! His love endures forever.

Cindy, Yucca Valley

Can we see pictures?
No, not of the potty training! The Celebration!!

June 12, 2006 3:18 PM  
Anonymous Anonymous said...


I am reading this last post from my hotel in Chicago, here on business. I am challenged as a man, father, and fellow believer in Christ by you glorious example of servent to your wife and family. This has been a journey where you showed so many of us the strength that is in Christ not in ourselves. Thank you for being an example to me and all those who have read your blog. My wife and I will see you Saturday with cake in hand.
Tom and Jeannette Leslie, Arcadia, CA

June 12, 2006 9:28 PM  
Anonymous Anonymous said...

So glad for the update and the news of "normalcy". Too far away to be there for the celebration, but please know that you all continue to be in my prayers daily. Denise is to her normal weight??!!! How COOL is that??!!

June 12, 2006 10:03 PM  
Anonymous Pola Avlonitis said...

Thanks for another "meaty" post, Phil. Wish I could join you all and I hope to meet you all one of these days. So encouraged to hear of Denise's continued progress. Hope you get a little rest in the midst of the chaos this summer! Pola (Knoxville, TN)

June 13, 2006 8:36 AM  
Anonymous Anonymous said...

Normal is such a joy, isn't it? Your little guy is even developing a sense of humor in difficult times of his own.

God is wonderful, life is beautiful, and reading this post brought tears to my eyes for the miracle of love.

The book is a good idea, I would love to share it with folks who will be touched, and also perhaps get a glimpse of our God through the way you came through all this.

June 14, 2006 8:39 PM  
Anonymous Anonymous said...

Wow- what are you doing on the 18th (Father's Day)? I think you definitely qualify for "Father of the Year"! and I will be praying for you also ths Sunday, as this is the first year without your father. I too know what it's like to Celebrate that day without mine (6 yrs now). But you - have definitely earned a great Father's Day!

June 14, 2006 10:59 PM  
Anonymous Anonymous said...

Yep a book is order.

June 15, 2006 5:14 PM  

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