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I got to go out on a Saturday and shop … amazing!!

This afternoon we left to drop Isaac off at his friend Cody’s house, which also gave Naomi and David the opportunity to use Cody’s trampoline (which Doug did tape for future viewing). Thank you, Langlois family.

I had an opportunity to chat with Cody’s Mom, too, which was great. Once we were done there, we went to Wal-Mart. Big deal for me, I actually managed to pick out clothes and shoes and try them on, while Doug took David and Naomi to buy the other items on the list. It was getting a “bit” unbearable by the time I hit the shoe aisle, but I was able to make it through the rest of the store, before the awful pain hit my back and legs. Naomi and I made it back to the van, extremely slowly, while Doug paid for the carriage full of items that we needed. I’ve needed several breaks since being home, but I’m still going, perhaps not as strong as earlier today, but still going, and that in itself is a huge blessing.

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So he reached for the wrong can … he’ll be fine!

One day this past week, David wanted to make a fried egg for lunch. Which is not a problem; both he and Isaac have been making them for some time now. After this particular time, I had come out to the kitchen and found the can of air freshner close to the stove. So, I calmly asked David what he had sprayed the pan with to make his egg. He was puzzled, and then when I had shown him the can, he realized he grabbed the wrong one. It was so cute. I asked him how he was doing and if his egg tasted funny, but he didn’t seem phased at all by the Cinnamon Sticks “flavor” he had with his meal.

Naomi has been adding extra drama to her tears by covering her eyes when she cries to over emphasize her grief. One of her great lines of late has been, “It’s OK,” or “Don’t worry, I can do it, I’ll be fine,” no matter what the situation may be.

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John Is Leaving

John turned 18 last Thursday. He celebrated this by launching a covert attempt to move out of the house. (Why it was covert is beyond me. He has every legal right to live where he wants; whether he was ready to do so, or whether this was in his best interests, is an entirely different question.) We did allow him to stay with his sister in Brockton for the past week, partly because we believed a break would do us all good.

Yesterday we phoned John at his sister’s house. We’ve talked to Felicia a number of times this week, but this is the first time we called to speak to John. We wanted to find out what sort of John would be returning today. We were hoping to see reflection and perhaps even repentance. Instead John told us he would be returning today to get the rest of his things. (This was one of the possibilities we were prepared for.)

When we asked where he was going, he wouldn’t tell us. He said he’d tell us eventually.

We told the kids. David cried for a long time. He is so loyal and so loving.

From last fall to late winter, John was all that we’d hoped he would become. His grades were quite good; he was clearly working hard in school, and had a part-time job in an accounting office. His attitude was excellent. He was helpful at home, and even managed to get along well with Isaac and David. For the first time in years, he behaved like one of the family, and it really felt that he was finally “home.” It was absolutely wonderful! I was so proud of him, and relished being able to brag about his achievements. We don’t know what precipitated the change, but all that disappeared, to our sorrow, by the early spring. Of late, especially the past few weeks, he has intentionally (as he admitted to our assistant pastor) been attempting to foment strife at home in the hope he could use that as an excuse to leave, not generating the level of discord he sought, but making life less-than-pleasant for all of us.

It appears John plans to live in Brockton, paying some rent, with someone he knows; perhaps a [biological] family member. He said “might have a job,” and that he intends to attend a vocational school in the fall.

I truly hope he succeeds.

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Mind-Body Connection: Rheumatologist at Brigham …

Or, how much pain can you work through on a daily basis?

How much would your body allow you to do with pain on the scale that’s typically 7 to 10? I’m frustrated, because I’d prefer to be active, being able to minister and do for my family like I once did…. and no one seems to “get” that.

—Nichelle

Yesterday we pulled off the usual logistics nightmare that involved a trip into Boston. Trish Dunn took the kids, except for John, who after a very disheartening and inexplicable episode, is spending a week in Brockton with his biological sister and her husband.

Dr. Anderson, a highly-recommended rheumatologist based at Brigham and Women’s Hospital in Boston (where Isaac was born), seemed to be highly skilled, and asked excellent interview questions. He is, unless we’ve missed some, the tenth doctor Nichelle has seen in the past two years.

Primarily, we forcused on the constant, very severe pain she is experiencing. He was able to rule out bone disease, tumors, diseases involving musculare weakness, nervous system disorders, and joint diseases such as osteoarthritis and synovitis. This left him with our old enemy diagnosis: Fibromyalgia. He explained that Nichelle had already tried most of the medications (and all of the types of medications) that normally help alleviate Fibromyalgia symptoms.

He suggested and later reiterated that he believed exercise would provide the most benefit. We twice explained very clearly that the recurrence of the debilitating symptoms occurred during a period of consistent and signficant daily exercise, and that the inability to do things like walk more than a few steps without intense pain makes exercise very difficult. He spoke of the “mind-body connection,” and how things like Yoga (although he does not “believe” in it per se) or meditation and other things that have to do with the mind-body connection can, in conjunction with exercise, be of benefit, indicating that one can change “how your body talks to you.”

He asked if she’d tried any of the various restrictive or eliminating diets, but we don’t know if he was thinking about the consideration of food allergies or sensitivities, or just throwing out possibilities. We discussed other alternative therapies: chiropracty (provided only very temporary relief), therapeutic massage (provided only very temporary relief), and accupuncture, which we are willing to try (there’s an opiate receptor model for how accupuncture actually works, which may make it ideal for treating pain), but we haven’t been able to find a practitioner covered by our insurance.

One of the more interesting things he asked Nichelle was, “If you were on the Western frontier 150 or more years ago, how would you handle this?” Later I thought of a really good answer: “She’d become a judge, and hang a whole lot of doctors.”

Overall, it was a long, discouraging day, especially due to the added concern about John.

This morning Nichelle seemed determined to fight through and determine just how much she could accomplish before completely succumbing to the pain. She even drove herself to the lab (5 minutes away) to get the latest bit of blood work done.

Nichelle made appointments today with the Pain Management Clinic at Southern New Hampshire Medical Center, and with who we hope will be a good primary care physician. Both are not until the end of July or first week of August.

Dr. Hall (who ties with Dr. Rescigno for “Best Doctors We’ve Ever Had”) called back with her latest test results: Nichelle’s vitamin D level was good, and her PTH (parathyroid hormone) level was good, which means that the hyperparathyroidism was indeed caused by the vitamin D deficiency. The importance of vitamin D was largely overlooked until fairly recently, we learned from Dr. Hall, and vitamin D deficiency has turned out to be very common, especially in the Northeast.

We’ll have some other test results, such as for hemoglobin disorders and blood cortisol levels, next week.

Later today Nichelle goes in to Mass. General for two bone density tests. The illustrious Debi Costine is providing transportation (we’re bribing her with Middle Eastern food), and Cindy Lavoix and company are coming over to our house to watch the kids (or play with our game systems; I’m not sure which), which means I get to go to work.

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Dr. Hall / MGH Visit 2

We had an excellent visit with the thorough Dr. Hall, although we are all still getting used to each others’ humor. To order the blood tests, Dr. Hall needed a diagnosis code, and was wondering what to put, so I suggested Munchausen.

Dr. Hall doesn’t believe Nichelle’s problems are primarily endocrinological, although there are endocrine issues, such as the previously diagnosed vitamin D deficiency and [probably] secondary hyperparathyroidism that she will continue to investigate. All of the thyroid tests came back fine. The adrenyls were good, and to our surprise, the various blood cell counts appeared to be normal as well.

She is going to do more hemoglobin-related tests, to look into various possible hemoglobin abnormalities that haven’t been tested yet. A blood-cortisol level test is also being done, apparently primarily because of Nichelle’s hair loss, although cortisol will affect edema as well. Last on the list of things to be tested now is bone density, both from the spine and hip. That will happen on Tuesday.

Another unlikely but possible problem is called cyclic edema. It’s difficult to treat, and it’s too early to diagnose, but it’s at least a consideration.

The next step is rheumatology. Dr. Hall referred Nichelle to a a senior endocrinologist, whom she described as “terriffic” and “very helpful,” at Brigham and Women’s. In an unexpected blessing, we got an appointment for Monday afternoon.

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Running Multiple Versions of Firefox Simultaneously

(Based on information from this entry at the Dojo Foundation BLOG. This information is for Windows machines, specifically for concurrently running Firefox 1.0.7 and 1.5.0.x, but the same information applies to other versions of Ff as well. David Schontzler’s aforementioned post covers ‘Nix machines.)

As a Web developer on some fairly complex projects, it’s important to be able to run the current Firefox browser, as well as the previous release.

These instructions are based on having first installed Firefox 1.0.7.

Locate your current Firefox profile. Normally it will be in a folder under your Application Data folder, typically such as the following:

C:Documents and Settings{user_id}Application DataMozillaFirefox

Copy the entire Firefox directory someplace convenient, so you have a backup, for when you miss a step and something goes horribly wrong. (I know—this would never happen to me, either, but I was grateful I had a backup the two times I munged this setup and had to fix my initial Ff 1.0.7 installation.) You want to be able to fix your Firefox extensions in the event your running of Firefox 1.5 tries to upgrade them, which is a one-way process.

Then download and install Firefox 1.5.0.x, to a location other than the default location. (I recommend using a directory named C:Program FilesMozilla Firefox 1.5, as C:Program FilesMozilla Firefox is the default.) Do not launch Firefox 1.5 yet. (Be sure not to tell the install wizard to launch Firefox at the end.) If you do, you’ll need to quit the browser, and replace the now-upgraded profile folder with the one you backed up.

To allow you to clearly identify separate processes in the Task Manager process list, and to avoid accidentally running the Firefox 1.5 installation without the batch file that will preserve the Firefox 1.0.7 profile information, I recommend renaming the C:Program FilesMozilla Firefox 1.5firefox.exe to firefox15.exe. However, if you choose to perform this step, you’ll need to rename firefox.exe to firefox15.exe each time you perform an upgrade (such as from 1.5.0.3 to 1.5.0.4) of Firefox 1.5. (See “Future Upgrades,” below.)

Next, you’ll need to create a batch file to launch Firefox 1.5 and load a Firefox 1.5-specific profile:

set MOZ_NO_REMOTE=1

start "Firefox" "C:Program FilesMozilla Firefox
1.5firefox15.exe" -P "Firefox 1.5"

set MOZ_NO_REMOTE=0

The above batch file presumes that Firefox 1.5 is installed in the directory specified, that the executable is named firefox15.exe, and that a user profile named Firefox 1.5 will normally be used. If you’ve used values for any of these items that are different than the recommendations above, alter the portions marked in red accordingly.

The first time you launch Firefox 1.5, the Profile Manager will appear. Create a profile that matches the name used in your batch file.

If you want to change the icon shown (on the taskbar and the Firefox title bar), create a new icon and place it in C:Program FilesMozilla Firefox 1.5chromeiconsdefault with the name main-window.ico. You can find one that has a “1.5” overlaid atop the regular Firefox icon here. You can also find utilities to change the text in the title bar itself, such as the Titlebar Tweaks Firefox extension—which, ironically, has not yet been officially updated for Ff 1.5.0.x (as of June 7, 2006). You can install an updated, but unofficial, version from here.

I have also found that using significantly different themes (skins) for my different Firefox versions helps keep them straight at a glance.

And, of course, if you prefer to make Firefox 1.5 your default Ff version, do so, and modify the batch file to point to 1.0.7 instead.

Future Upgrades

The best thing to do when one is about to upgrade Firefox 1.5.x, is rename the firefox15.exe back to firefox.exe, run the ugprade, and then rename it back. If you don’t, you’ll find that your firefox15.exe is still around, but that the upgrader has added its own firefox.exe, requiring a delete-and-rename, as well as producing some interesting quirks, like Firefox not realizing it’s been upgraded because the .exe you’re running is the old one, while everything else is new.

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Fluctuations and Patterns

Occasionally, Nichelle will have a day when she feels well. These are relatively rare. I did some backtracking on the BLOG, to try to evaluate my impressions of the pattern for the past month or so. Here’s what I found:

Great days:

  • Saturday, April 29
  • Wednesday, May 31

Partially good days (there may be a few others of these, but not many):

  • Friday, April 28
  • Thursday, May 11
  • Friday, May 12
  • Wednesday, May 24

Bad-to-really-bad days:

  • All the others, especially from May 13 until the present.

On the “great days,” Nichelle can walk, run, drive, cook, and live pain free. Such days tend to appear suddenly, and the good period lasts for no more than 36 hours, and generally just 8 to 12 hours. I think people get the impression (especially because they don’t see her except when she’s in this better state) that Nichelle’s overall health is improving. Sadly, the opposite is clearly the case.

Of late, Nichelle is spending most of her time in bed. (Previously, the couch was her base of operations.) She’s extremely uncomfortable and in significant pain just about all the time, with bouts of severe pain several times a day. The fluid shifts (swelling) in her face and elsewhere can be very pronounced. The Vicodin (just like what Dr. House takes) prescribed by the emergency department doctor—the only pain medication that has actually helped relieve the pain—is gone. Nichelle made 10 pills last 6 weeks, but doctors don’t like to prescribe Vicodin because it is highly addictive. Generally, Nichelle doesn’t like to take strong painkillers like that because they guarantee inactivity, whereas living through the pain offers a slight hope that it will diminish enough at some point for her to perform small tasks.

For the past 24 hours, Nichelle has been in and out of deep and sudden sleep periods. We see this pattern quite regularly. Also, for the past few weeks, she’s been getting a sudden and urgent feeling that she needs to get something to eat. If she doesn’t, she becomes suddenly “drained,” and experiences what she describes as being “beyond weak feeling.”

Although there have been a few more “great” days than we typically saw in the past few months, the overall picture is of slowly worsening symptoms.

So far we have no word on the test results from our Mass. General visit on May 12, which means they were either all normal or are being carefully evaluated. Our next appointment with Dr. Hall at Mass. General is on June 16.

Our church family has been helpful, and they are shifting into a higher gear this week, coordinating more cleaning help and more meal preparation.

The biggest task-related problem I’m having is keeping the house clean. I have a big work-from-home typesetting project I’m working on evenings/weekends, and that’s leaving even less time for mopping and decluttering. (Plus, Nichelle’s worse-than-previously health has given her fewer opportunities for short cleaning spells, or even supervising the kids in the same.)

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NaNi: Increasing in Wisdom (and Humor)

Naomi is now two and a half years old, in the stage many parents refer to as “The Terrible Twos,” although they haven’t been that bad for us, there is a big difference in Naomi’s willingness to obey. A few months ago, noticing her increasingly complex methods of disobedience, I remarked, “Your brain is getting bigger: You’re learning to sin in more elaborate ways.” She promptly reached up and felt around on her head. I had no idea she knew where her brain was. I wonder when she absorbed that. (We did teach her where her spleen is, because we have a friend who likes to tease the little ones by asking the location of the spleen, after the more traditional nose, ears, etc.)

Among the many things that amaze me is Naomi’s ability to completely ignore the commands we give her. She does so without giving the slightest inidication that she actually heard us say anything. She does this without regard to the urgency or volume of the command given. It’s amazing. I remember the other kids having “selective hearing,” but had forgotten how extreme it can be.

Not long after age two, NaNi announced when I got home, “My spankings all done, Daddy.” I was amazed. “You’re all done getting spankings?” “Yes.” “You mean, you’ve decided to choose to be obedient?” She replied in her sweetest, most singsong voice, as if to tell me how silly I was, “Oh, noooo.”

Another time, David was being verbally corrected for something he’d been told to do but neglected. NaNi grabbed a wooden spoon out of the drawer, held it in one hand while tapping her other hand with it, and announced with glee, “Spankin’ time!”

“By myself” and “I did it myself” have become her new mantras. She wants to do everything she can herself. She can crack and cook eggs (with supervision), helps out with the laundry, and pushes to do everything from pour a full container of juice (not a good idea) to dress herself (which she does very well, with about the same propensity of getting things inside-out as David exhibits).

She also likes to quote movies and other things we watch. Before her second birthday, she’d run around saying, “Demon llama! Aaaaaaaaaaah!” from The Emperor’s New Groove. Now she will come up with, “I’m a dirty skunk?!” (from Buggs Bunny), or “You little rascal!” and she can even do the entire “Niagara Falls” dialog from The Three Stooges. (Of course, she won’t do this on command, so I haven’t gotten it on tape yet. :: sigh ::)

She loves to sing. I am always moved when she sings, “I Stand in Awe of You,” a worship song. She’ll often be heard singing Sunday school songs or the songs in Chitty-Chitty Bang-Bang, which seems to be a particular favorite of late. NaNi dances, too. She loves to mimic the dances in Charlie and the Chocolate Factory or the “Me Old Bamboo” song from Chitty-Chitty Bang-Bang. She also makes up her own dances, including a beautiful one she does to the credit music of Finding Nemo. Her favorite thing to do is pirouette, and we have to keep a dress or two on hand that she can put on because she loves the way the skirt flares out when she does that.

One time when NaNi was preventing me from working at the computer, I asked her to go bother Isaac instead. She was very, very skilled at this. She started with sticking out her tongue at him a few times, with appropriate sound effects. When that didn’t produce the desired result, she walked over to him and started slapping him all over. Then she tried to push him out of his chair. This skill must be instinctive in little sisters.

Whenever we’re in the car, NaNi urges me to, “Do Burnout, Dad. Crash the cars!” (Referring to the style of driving in one of our favorite games for the Xbox.) Then she’ll add, “Pleeeeeeeease. Pretty pleeeeeeeeeeeease.” I can imagine the result, “But, officer, she asked so nicely …”

Before Isaac’s birthday, I was asking Isaac about who he was going to invite. I teased him about Amy, a girl who follows him around constantly. I asked Isaac if he was going to invite her, and NaNi interjected, “Amy not come, Amy’s a slacker!”

Naomi has also learned to use the computer mouse effectively, at exactly the same age Isaac and David did.

She nearly completely potty-trained herself mostly before her second birthday. (she still wets a bit, so she gets Pull-Ups; we’re not pushing the issue, especially as she can change her own Pull-Up.) And for some reason, she prefers to flush the toilet with her foot.

Someone taught her to ask, “Are we there yet?” That person will be found and punished appropriately. (For the record, NaNi claims to have taught herself that particular clause.) Generally, though, she merely asks, “Where are we going?” repeatedly while we are out.

She’s been riding a bike with training wheels for many months now, and has taken it on short trips (about a block). Saturday she wanted to ride it to the park, so I accompanied her. She actually rode the entire 1.11 miles all by herself, only stopping to throw some rocks in a puddle. Then she spent the next hour and a half playing in the park, and climbing like a monkey on a spider-web-resembling 7-foot-high climbing thing. Her upper body and arm strength has improved rapidly in the past few months, and it really shows in the things she is able to do while climbing. She can also now climb into the treehouse on our swingset, and is trying very hard to master the monkey bars.

I love all her jokes. Tonight she had a blue tongue (from drinking a blue-colored soft drink), and Nichelle commented, “You have a blue tongue, what have you been drinking?” NaNi’s laughing response: “Bath water.”

One of the things that most impressed and intrigued me of late was when she and Nichelle were talking about her third birthday (not until October). Naomi said that she wanted to invite Cody. Cody is Isaac’s friend, but NaNi is in love with him. Nichelle said that Cody was a little too old to invite to her birthday party, so NaNi suggested, “I’ll take off my head, and put Isaac’s head on. Then Cody can come.” She also tried to pull off her head, and later that night asked Nichelle, “Mommy, [will] you cut my head off?” What simple brilliance!

I shouldn’t be surprised at all this, though; after all, she is Naomi Wilcox.

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Moving, walking, running … little things for some, but not to me …

How wonderful it was to wake up yesterday morning feeling no pain and being energerized!

This week in school for the elementary grades is “spirit week.” Each day the kids get to dress up according to the predetermined selection of ideas. “Hats, glasses and slipper day” was yesterday, and today was mixed-match day. Yesterday, I was able to run downstairs and lie on the floor looking for stuff under their beds, helping the kids locate items that were deep underneath. That, of course, is a big deal. And I was able to get back up without help. On Sunday night, although in some pain, I was able to help Isaac make a meat eating plant (pitcher plant) for costume day. You’ll see the outcome [Doug: Pictures coming tonight.] and he won second place, too. I was thankful that I was able to do that with him, too. David was a fireman, and he had the costume for that, easy work there. Today being mixed-match day, the kids needed assistance buttoning up their clothes backwards, wearing weird ties, suspenders and a bow tie, I believe from the 70’s. Ah, the ties may have been from that era as well. [Doug: I’ve kept a couple of boxes of “costume stuff” for the past nearly two decades. Weird ties are easy to find at any thrift store.] It was great fun. Doug did take pictures of their final results, and I’m sure will get the pictures posted soon. [Doug: Nag, nag, nag …] I’m still feeling well, too.

On one of the days that I was unable to get the kids from school, Isaac and David were eager to watch a new movie that Doug had bought for Isaac the night before, and Naomi joined them. John hung out with me, and we talked for—what I was amazed at—the entire length of the movie. We were just talking about a lot of things/issues. It was great to spend that length of time with him and hearing what God is showing him. What a blessing.

After Naomi got up this morning, I went and sat down with her in her room and just had a praise and worship time in song. I sing along with CDs that we have, but I haven’t just belted out song after song by memory in such a long time. How I long to be back in choir again and singing specials, but for now, I pray the songs continue to come back to memory again, so such a time or praise can be had again.

Something else I was able to do was play with Naomi yesterday in the backyard with her on the swingset/gym set with the monkeybars and “clubhouse.” She is now able to climb completely up to the clubhouse and get down without help. That part is at least 7 feet high. That’s pretty impressive climbing skill for a 2 1/2 yr. old. [Doug: You should see her climb down the center of the ladder assembly; she hoists herself on both arms, legs flailing, and pretends-screaming.] Naomi also for the first time yesterday used the monkeybars. I was under her, of course, for assistance if necessary. She was able to do three rungs by herself. Oh, she also scales the poles on the indoor gym equipement we have. Her upper body strength is amazing, too. I think Doug took pictures of those. [Doug: I have video of the clubhouse climb, but no pictures.]

Doug again, has been amazingly helpful and quite busy. Doing all he can for us. He joked with me that God has blessed me with all the grace. He’s given it to each of us in different ways and I can see that in the kids and in Doug. They have each had to go through a lot, and with more to come, a couple of good days so far, but…. Many people will say, “I don’t know how you can do it,” and that can be said to each person in my family—but the answer is the same, in my eyes anyway. It’s by God’s grace and that alone. For the kids to go about and do things, at times for themselves or just with little help, not having a Mom to do the typical Mom things I once did, can be hard, and the same goes for Doug. The things he’s taken on and does great with are excellent.

This past Saturday, Phil was up visiting and he and Doug went out in search of a new TV. [Doug: We weren’t really searching; I’d already done the research via Consumer Reports and a number of other online product reviews. Conclusion: The 34″ Sony WEGA HDTV is amazing, and, although smaller, exceeds plasma TVs by a huge amount in quality, at a much, much cheaper price.] They found one and it’s awesome. I got to operate it yesterday for the first time. Hadn’t been out of my room since Sunday, except to get a couple of things and then return. It’s also been great seeing Steve Deyesso again, too. He was around one day early enough to pick up the kids for me. David remembered his face, but couldn’t come up with the name. Naomi played the shy girl for a while, but finally came around. Now when he visits, she’s her typical sweet self and goes right to him.

I thank God and praise Him for the grace and strength He has given through this illness and again thank the many of you who have helped for your care, many prayers, and for the assistance you given.

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NaNi Empowered

Last night on the way to church we were on Route 102, and Isaac and I were talking about the time we rode our bikes to about the same place, but had to turn back because I had a leaky tire.

Naomi piped up, “I come? I ride my bike, too?”

I explained that she was still too small to ride that far (she’s only 2.5 years old), but she disagreed:

“Yes, I can! I’m Naomi Wilcox!“