Thursday, July 13, 2006

Neuro & ID appts: Great news abounds!

I feel lead to put a concern for one of Denise's friends at the top of today's post. Her 33-year-old friend with stage 2 breast cancer is having surgery this morning at 9:15. Her concerns are that ALL of the cancer will be removed, that it hasn't gone into the underlying muscle, that it is NOT in the lymph nodes (MRI shows that it is), that it hasn't spread to any other parts of her body, and that she can get a particular doctor that she's angling for. She's already had to deal with being disabled for all her life, and that's turned her into someone that presses on in a way that inspired Denise to work so hard through physical therapy. So she'll do her part. Please tug God's robe for her, the medical pros taking care of her, and her family. You participated in a miracle with Denise. Maybe her friend will be then next item on our watch list.

After that, it almost feels inappropriate to post so much great news about Denise. But I know her friend doesn't mind. Hopefully the following will be encouragement that from the bleakest of circumstances, great things can happen. So here we go...

Lab results: Tuesday's labs came back showing the titers (used as an indicator of the cocci infection status) moving one step toward normal (I believe she's now at 1:16, for those that dig this kind of stuff). Liver labs also improved markedly (AST 42, ALT 65, Alk Phos 209) and continue to move toward normal. All electrolytes are within a normal range. Notice how that word "normal" kept popping up in all those sentences? Woo-hoo!
Neurology appointment: Here's what the doctor typed into the progress report on Tuesday: "Alert, speech fluent, face symmetric, gaze conjugate. Motor exam is intact, without focal weakness. Gait is symmetric and intact." He said that he sees no reason why Denise can't start driving again. So we're going to start practicing and take her for a driving evaluation. His plan is to keep her on the current doses of her meds for a few more months and then gradually try to taper down as tolerated.
Infectious Disease appointment: Right after the neuro appointment, we went across the street to see the ID guy. He was pleased with Denise's progress as well. Of note was that she's doing well on voriconazole (Vfend) antifungal, which isn't used as much as fluconazole (Diflucan). He thought that the issues Denise had with the vomiting and increased liver problems earlier this year were related to developing intolerance to the fluconazole. He also thought that when my nurse aunt & I go to the Valley Fever Symposium in August, we should share Denise's experience, as it would add to the body of knowledge and might be helpful to the doctors in treating other people with cocci. So I guess I should go to the uniform supply store & buy a white lab coat so I'll fit in (and look sharp). On the other hand, I'm all about casual, so maybe some scrubs would be a better fit.
Proof in the pudding: Denise is improving, and everyone that interacts with her can tell. She's been doing fine mentally, emotionally, and been making tremendous strides physically. About five or six weeks ago we visited my nurse aunt, uncle, and webmaster cousin for an international food fair in Balboa Park, San Diego. Last week we visited again for our anniversary. My uncle noted that a few weeks ago, Denise had to use a wheelchair to get around for the food fair, and last week she was able to walk down & back up steep hills at the Wild Animal Park and she never used the wheelchair. Yay! We joined our city's little gym so she can do her physical therapy locally (and $100 per year for the gym is way cheaper than the $30 copays for PT). One of the trainers at the gym showed Denise where all the PT equipment is and gave her permission to use the stuff any time she wants. She's working hard and increasing in balance, flexibility, endurance, strength, and coordination. At home, she's been doing all her own personal care for weeks, can prep meals, care for kids (she can pick up Jacob, and he's having a growth spurt), and even practicing some low-key dance moves from a video. We used to take swing dancing together and hopefully that'll be on the radar screen again soon. With swing dancing, the basic guy part is easy; that gal does all the flashy stuff to make the couple look good. So for regular guys that don't like dancing (and you don't, right, chaps?), I'd recommend swing dancing as a good way to satisfy your gal's need to go dancing while saving yourself from looking like a doofus. But I digress...
Room search: Anyway, Denise is doing so well that we feel we've accomplished our goal of getting her self-sufficient enough to not need live-in care anymore. So in anticipation of Denise's caregiver moving out, contact us if you have a lead on a spare room for a neat, tidy, well-organized, considerate female. As a bonus, she's got a British accent that adds a bit of sophistication to the household, too.

Potty training update... Jacob is chugging right along. A few weeks ago he'd sit on his potty, pull the catch basin out, pees through to the floor, and then put the catch basin back in. Now he keeps the catch basin in and does his thing. But then a few times he's pulled it out and waved it around, saying "Look! Pee-pee! Yay!" We've been mopping the bathroom floor & walls fairly frequently lately. I think I liked the diaper better. If you've got a worse potty training story, I could use it about now so I can keep things in perspective.


Anonymous Anonymous said...

I am one of Kristen Reed's friends, Amy. Thank you for posting about her surgery today and asking for prayer on her behalf! On the potty training note, I have to share one of my stories! My son started potty training a few months after his 2nd birthday and within a month was having few pee-pee accidents. Great. . .but he refused to poop on the potty. Was absolutely terrified of it for some reason. So I had the conundrum of whether or not to go back to diapers. It seemed silly to go back when he was totally potty-trained with number one. Needless to say, I spent a few month cleaing poop out of underwear daily! Then he would just hold it until I put his diaper on for nighttime. Talk about control! Despite my fears, he is now about to start kindergarten fully able to poop in the toilet. It does help to hear what craziness others have had to deal with!

July 13, 2006 3:29 PM  
Anonymous Anonymous said...

It's so wonderful to hear all those "normals"!!!!
I think this blog could go on forever. One miracle at a time.
We've assembled into such a great prayer group. Please don't stop blogging!!!
I'm in Yucca Valley listening to the fire helicopters fly overhead. Prayers and blessings for the men and women of the fire departments! So far, there have been no human casualties, Praise God!

July 13, 2006 6:36 PM  
Anonymous Anonymous said...

My friend and I were at McDonald's with our kids one day. It was lunchtime and the place was pretty busy. All of a sudden her youngest son -- the potty-trainee -- stood up on his chair and announced in a loud voice, "I'm peeing!" And boy was he! He pretty much flooded the place. It made quite an impression on my three boys and they still bring it up every now and then.

July 13, 2006 6:45 PM  
Anonymous Anonymous said...

In response to Amy's comment, and for your information Phil...I was told that when little boys see poop falling out of their bodies, they often get fearful that they are going to lose their body parts much the same way, if you know what I mean. So fear of pooping, and holding it, are common. Try explaining that away to your 1 year old! I can't post my name because my son who's now in 6th grade would be mortified if I identified myself!

July 17, 2006 10:51 PM  
Anonymous Anonymous said...

On the humorous side...

A conversation during potty training. While in a large store.

C: Mommy, I have to go potty

M: OK, lets go find out where the restroom is.

C: Mommy, don't worry

M: Right. We'll be there in just a minute. Keep walking.

M: Oh, you mean we don't need it anymore (amid sounds of a waterfall.)

Such are the joys of life. Things you don't expect will be joys!

August 30, 2006 5:13 PM  
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April 26, 2007 5:20 AM  

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