Redirection

After much prayer, thought, and consultation with trusted friends, I have decided to re-evaluate this entire blog. I've removed several of my recent entries after having been confronted about their contents. In looking them over, I can see that my attitude has been very poor.

I tell my children all the time that Philippians 2:14-15 says,

"Do all things without grumbling or questioning, that you may be blameless and innocent, children of God without blemish in the midst of a crooked and twisted generation, among whom you shine as lights in the world."

Unfortunately, I haven't exactly been a blameless innocent shining light myself. I've been a pretty poor example of this verse. In fact, I've realized that I've been living one long, drawn-out complaint for the past few weeks... or more. And I've been blogging about it too, broadcasting my anger and dissatisfaction for the world to see. I've been a fool, as Proverbs 29:11 says: "A fool gives full vent to his anger, but a wise man keeps himself under control."

A commenter this morning wrote in part, "Perhaps instead of addressing the grammar, social, and political issues out there, you might consider the unaddressed anger in your heart." He/she is right. I wish they had felt comfortable approaching me in person, in private, about this. Clearly some of their reluctance was caused by my pride and the way I come off. I'm not sure how to be less intimidating, but I'm going to work on it. God is working on my pride.

One of the big reasons I'm reconsidering all content on this blog is the issue of Biblical confrontation. My husband pointed out that "going digital" just doesn't feel right. No matter how accurate the accusation, the Bible tells us to confront each other in private, in person. I am certainly to blame here too -- my angry writing was an attempt to fix a problem I saw, but was definitely not done in a spirit of restoration or in the right venue.

I would like to humbly request each of us to consider how we are to confront someone we see doing wrong. A friend wrote the following in response to the first comment (both comments disappeared when I deleted the blog entry):

"The comment above is not spoken in love. If you're too worried about how she'll respond to you, your motive is not to see her honoring God, but for her to be nice to you. If it was the correct motive, it doesn't matter her response, it matters how YOU honor God by talking to her about it and praying for her. Joy may have faults, but if you see them, you should talk to her in private and I know God's work in her heart will bring it to light for her. A public blog is not the place to address someone's heart. You've just posted Joy's sins for the world to see rather than one-on-one confronting her. That is not the way God intends for us to learn from our sins."

(Incidentally, she is one of the people I spoke with today who confirmed to me that I had some things to think about and correct.)

So, I've initiated some changes to the blog. No more venting online. I'm not sure what I'm going to write about, actually. It's possible I may draw the curtains on this blog altogether. I know that I will be plenty busy updating our Carepage and our family website, and just keeping the family fed and clothed and clean when the baby is born, so blogging may fall by the wayside naturally. I'm still praying about it. I would appreciate your prayers for me as well: that God would give me wisdom and change my heart.

Photo Update

I recently digitized some old photos from when my first child was born and hospitalized, as I needed them for a presentation at Children's. I decided to add a few to the blog I wrote in January about that time in our lives.

To view the updated entry, click "Blessed with Real Problems."

Also, you can click each photo to view it larger (including the scan of Elli's heart defect).

We're Crazy

At least, most people think so when they see us out. What else could explain two adults choosing to have more children after their first ends up in a wheelchair and unable to speak or feed herself?

I'm pretty used to fielding questions and comments about our family. But Scott got to experience this first-hand last Friday when he took the three kids by himself to the local children's museum. I had to take diversity training that day, and everyone else in his department was on vacation, so he decided to take a day off and spend some time having fun with the kids.

We've never taken them to the children's museum, though we've heard lots of great things about it. I hated to miss it, but I was really glad he got to do something fun with them. He took some great pictures of their day. The kids did GREAT for him, and they all LOVED the museum. In fact, I'm thinking about getting a season pass there instead of to the zoo this year -- we can go to the museum in any weather and might get more use out of it.

But it's funny -- I think the thing that stood out the most to him from their outing was the impression a lone father with three kids made on all the other visitors. He said he definitely could tell people were dumbfounded by the sight.

Little Girl behind the wheel of a city bus. Scary thought!

Big Boy is VERY curious about nature and how things work now.
He loved this magnifying glass on a track --
it rolled across a display case containing all sorts of artifacts.

Elli got to visit a wheelchair-accessible treehouse inside the museum.
Scott said the whole place was very accessible to wheelchairs.

Potty Training Day

6:44am
Big Boy and Little Girl climb into our bed, and after being quiet for about 2 minutes, start clamoring for breakfast. I groggily get them something to eat and make sure Little Girl has a full glass of milk to start off her day with lots of fluids.

7:30am
I sit down to breakfast and review the procedure for the day.
1. Show Little Girl with a doll how to check for dry underwear, hurry to the bathroom, put the step-stool and child-size insert on the toilet, pull underwear down, sit on the toilet, urinate, wipe, pull underwear up, and flush.
2. Have Little Girl walk the doll through every step of the process, "teaching" the doll how to potty.
3. Demonstrate wet underwear by having the doll have an "accident" and practice hurrying to the potty a few times to reinforce the right procedure for keeping pants dry.
4. Have Little Girl practice each step of the process herself, giving salty treats and as much fluids as she'll drink at every step along the way.
5. Do "dry pants" inspections every 5 minutes, rewarding her for having dry pants.
6. Practice the potty procedure every 15 minutes, trying to sit on the potty quietly for as long as possible so as to catch her on the potty when she does need to go. Reward for success independently performing each step of the process.
7. When she has an accident, have her practice the right way to keep pants dry 10 times, clean up her mess, and change herself into clean underwear.

8am
I prepare snacks, drinks, checklist for dry pants inspections and potty successes, doll, and plenty of clean underwear. Everything is in the bathroom or the girls' room so we can limit our range at least for the beginning of training.

8:15am
I begin training. First, I sent Big Boy with his toys to the other end of the house with strict instructions not to interfere with us all day. We worked with the doll for the first 45 minutes or so. Little Girl really liked this part.

9:30am
Our first success! She was very distressed at the idea of peeing -- I could tell by her facial expression. But we cheered and high-fived and sang a celebration song and gave treats and really tried to reinforce that this was GOOD.

10am
First accident. But we got onto the potty fast and stayed long enough to finish peeing and actually have a bowel movement too. So I didn't make her practice 10 times, just 3. She HATES that part, but that's really the point -- I want to motivate her to keep her underwear dry. When it's wet, it should be a big pain to go through the whole rigamarole of practicing the right way 10 times!

10:30am
Another accident, but just a little. We did the practice a bunch of times and she got really upset. Then we put on dry underwear. She peed a little more very quickly. This time I had her sit on the potty for awhile, and she peed a large amount after waiting a few minutes. Again, I skipped the multiple practices because I wanted to reinforce the positive part. She still isn't telling me she needs to go, though. I have to make her get on the potty and watch for signs.

1pm
Little Girl still isn't initiating, and her automatic reply to my questions about whether she needs to go is still "no." But she's kept herself dry for awhile and we've had 2 more successful trips to the potty. I'm trying to decide what to do for naptime. Should I go ahead and leave her in underwear, knowing that I will most likely be changing her sheets? Or should I figure on pullups for sleeping and underwear for waking hours? I don't mind pullups at night, but I'd like to be in underwear all day asap.

3:45pm
I put her to bed in underwear, and she did wet the bed. She wakes up really groggy, so she had a tough time sitting on the potty right away. She did it, but she didn't pee. She did drink a large amount though, and then we took off for the swimming pool. Since she had a bowel movement today, I knew it would be ok not to put a swimming diaper on her, which was nice (though she was a bit upset by that at first!).

6:15pm
We got back from the pool, and she very willingly went straight to the potty when we got home. And she peed really fast this time! She also drank a good amount at the pool, so I'm hopeful that we can get one or two more successes in before bed tonight.

8:30pm
No more successes. We had an accident at dinner, but who knows? Maybe the repeated practice, especially from outside on our deck where we were eating, was better in the long run than a success would have been. All in all, I feel encouraged by the progress we made today. Tomorrow should be interesting -- going to church with underwear instead of pullups could be quite an adventure. But there's no going back now!

Diversity Awareness

Today I had to take a mandatory class for my job at the hospital called "Diversity Awareness." I have to admit, I wasn't looking forward to it at all. Because I'm so part-time and because work is so busy right now, I really begrudged the loss of 8 hours of my 10 per week to a class that I didn't think I needed. I was leary of the potential for psycho-babble, self-esteem hogwash, and white bashing. Plus, I've run into a couple trainers at the hospital who teach like they are in front of a class of 1st graders. I know this is a weakness of mine, but my pride takes a bruising when I'm talked down to like that, and it usually comes back swinging. Not a lovely trait, and one I'm working on.

I have to confess that the class was done very well. Our instructor was very professional and proved herself highly credible. She also made the class very interactive, and I learned a lot from hearing the other people in the class share their perspectives, experiences, and struggles.

Our hospital is quite large, employing over 8,000 people from research to food service to medical personnel. We draw employees as well as patients from all over the world, so everyone has to work with someone who is different from them at some point, even if they aren't involved in direct patient care. So our group represented quite a cross-section of cultures and job roles. But diversity isn't just about a person's heritage. It's about everything that makes them unique, from appearance to religious beliefs to physical abilities to education (having a lot of letters at the end of your name, like MD or PhD) to which building you work in.

The gist of the whole day was to watch yourself for times when you jump to conclusions about a person without talking to them and getting accurate information. We tend to make judgments about people immediately, and then never take the time or make the effort to get to know them because of those snap judgments.

I couldn't help but think of Phillipians 4:8.

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.

Those snap judgments and assumptions we make about people? That "reading between the lines" of what is said or how it is said or how I perceived its accompanying body language? None of that is thinking on what true or honorable or just. That's all me filling in the blanks (making things up) and interpreting those stories for myself rather than getting the facts from the person themselves. I like to think of myself as really smart and able to figure things out with this sixth sense or women's intuition or whatever. But it's really just laziness and refusal to take a risk and step out of my comfort zone to actually talk to someone.

So if those who claim to believe and obey God and His holy book, the Bible, really do what it says, none of us could ever be accused of not listening, or worse yet of ugliness like racism or bigotry or hate or bias.

Medicine in the Round

I was completely unfamiliar with the term "rounds" until Elli was admitted to the ICU as an infant. The term comes from the phrase, "make the rounds" meaning to check in on everyone in an area. Rounds in the hospital setting is the daily formal review of each patient under each specialty's care. (This can mean that a single patient may be visited by multiple specialties each day. For example, when Elli had a seizure 2 1/2 years ago, both cardiology and neurology rounded on her, plus the neurosurgery team and the general medical staff running the floor she was on.) Rounds normally occur in the morning, though in the critical care areas, staff also round in the evening.

Until a month ago, we'd really only experienced rounds in three areas -- the CICU (cardiac intensive care unit), the PICU (pediatric intensive care unit -- I'll have to tell my story from that unit sometime), and the medical/surgical floor that also serves as the cardiac step-down unit.

During our most recent hospital stay, Elli was admitted to a different area -- the general/community pediatrics floor. Apparently since her heart condition wasn't in question this time, they decided it would be better to send her to the regular-sick-kid unit. Except that the bed-planners (yes, there really is a job in that -- and it gets really complicated when the hospital is busy) didn't realize that Elli is never a "regular sick kid."

General/community pediatrics is a floor with its own personality. (Actually, I've discovered that every unit is unique, so no matter how experienced you are with hospitals, there's always a learning curve.) The most notable difference to us was the sheer number of doctors we ran into. I deduced that the swarm of doctors were coming to us from a) residency or b) medical school. Since it's a general pediatrics floor with no special focus, all residents (official doctors obtaining their required 3 years of hands-on medical experience) and medical students studying at the neighboring medical school rotate through to get their pediatrics experience, whether they intend to specialize in pediatrics or not.

During rounds each morning, every single one of them appears at one time, which is quite astonishing considering that normally, when you want a doctor, you can't even find an undergraduate biology major! They all (we counted at least 12) troop into each patient's rather average-sized room , three of them pushing laptops-on-wheels, and they stand around the patient's bed to discuss the past 24 hours and the plan for the day.

Based on my observations and my best guess as to who was who (they introduce themselves, but that's a darn lot of names and roles to remember at once!), I believe that each medical student must interview a certain number of patients when they arrive, and then monitor them (with resident supervision, of course) whenever they are on duty until the family leaves or their rotation ends. That student then reports the patient's history and any developments in the past 24 hours during morning rounds. This gives them invaluable experience taking a medical history (which involves hearing what the family and/or patient is saying and not saying and asking the right questions to draw out the needed information), in reporting that medical history (it's like telephone -- you would be surprised at how much even a medical history can change when it's passed around!), and in reporting any new developments.

At our hospital, an increasing number of medical teams are encouraging families not only to listen to the discussion of their child during rounds, but also to participate as much as they are comfortable. This gives families a chance to correct anything in the medical history, fill in things we may have forgotten to give in the original admission interview, and add anything necessary related to recent developments. We also get to be part of the planning discussion, whether it's treatment plans for the day or discharge plans.

Our hospital has been on the forefront of this new model of rounds. Up until a few years ago, it was pretty much unheard of for patients or families to even get to listen in on rounds, let alone participate in them. Rounds are, in the eyes of teaching hospitals, primarily a time for teaching the students and residents.

But hospitals like ours have two main rebuttals to this. First, the primary purpose of any hospital is to get the patient well enough to go home. Training doctors is secondary to that purpose. Healing patients requires having the most accurate information and the best cooperation from the patient and family. Second, patients and families can make valuable contributions to the teaching discussions during rounds. (I think that us non-medical types can be less afraid to ask the "dumb" or obvious question than the students who are being graded and assessed.)

Studies show that you get better outcomes when you include families as equal members of the medical team. They know the patient's history the best, they know the patient's baseline the best, and they know how the patient responds to various things best. When the patient is chronically ill, the family and/or the patient also needs to know what is currently happening, because that information becomes their medical history in the future. I can't tell you how important it is to have accurate information to give!

One thing we don't know is what effect having these conversations may have on children. I've grown increasingly conscious of the kinds of conversations I have in front of, or in earshot, of my kids. I want to make sure that I can choose the time and the method for sharing difficult information with them.

I would also guess that some children (and many parents) find rounds intimidating, daunting, even scary. It's rather like being naked, having that many people standing around discussing your most intimate physical issues in great detail. Children could easily misinterpret the meaning of that many people standing around their bed, thinking this must mean they are really badly sick or going to die.

Our hospital gives new arrivals a card, on which they can indicate their preference for rounds. We can request to be included in rounds or not to be, and whether we want to be woken up for rounds. We can also request that they round in the hallway, rather than in the patient's room. It's a catch-22 because if you round in the hall, anyone walking by can hear your child's personal medical information being discussed. However, lately I've decided that I'd rather keep those conversations out of her hearing.

In our recent stay, the medical team did come in a couple times (not sure if they didn't read the card or if I didn't check the correct box!). The group was stacked two deep all around Elli's bed. They stood around for a good half hour, relating her entire history and discussing her plan for the day. I appreciated the chance to hear how they saw her case and to ask my own questions. I also was more familiar with the faces who came in throughout the day and night to try to figure out what Elli's latest secret was. (Like I said, Elli wasn't your typical sick kid -- she kept everyone guessing for days and came up with good mysteries for those students to solve.) They also asked for my preference when we began to discuss going home -- was I comfortable going home at this particular time?

However, Elli was not a big fan of having rounds in her room. I think what bothered her most was not the content of the conversation, or being self-conscious because she was the center of attention (when she was younger, she ate this up, smiling and making eyes at everyone). I think what ticked her off was the resident who turned the volume completely down on her video! She will let you do just about anything to her or around her as long as she can see or hear her favorite movies or shows (we used to get IVs in her while she would watch Veggie Tales, and she wouldn't cry or even whine about it as long as no-one blocked her view of the TV).

So I'll be interested to read studies, hopefully coming out soon, on the effect of having rounds in front of pediatric patients at various stages of cognitive development. Meanwhile, it looks like I'll have to be pro-active in enforcing the preferences I give on those admissions cards!

Milestones for All

1. Little Girl finally successfully used the toilet! Only once so far, but it's a start. It took so long I was beginning to think I'm just the world's worst potty-trainer. I might still be, or maybe it's just tougher with more kids distracting you from the task...

2. Big Boy is taking showers now, instead of baths, and pretty much can do everything himself.

He is also doing much better in the toilet-training department. We finally got a new procedure down, which is working much better. He's also stopped having accidents at night. Our water bill and washing machine will be very thankful to get a break... if Little Girl would stop picking up the slack!

3. Elli will be off two medicines tomorrow! She currently takes 7 a day, so dropping two is a big deal. We just finished weaning off her seizure medicine -- it's been a months-long process but we're finally there. I can't express how much I have longed for the day she would finally be off that med -- I've hated every second since August 2004 when she first went on it. And tomorrow morning she's having a procedure on her saliva glands that will hopefully control the fluids in her mouth better than the medicine she's currently taking. The medicine has stopped working, even though she takes it 3 times a day. I can't wait to drop that one off the schedule too.

4. I've arrived at biweekly OB appointments. Six weeks to go, if we stick with our plan to induce during the 38th week. I'm having another fetal fibronectin test this afternoon though -- we don't really think I'm in a preterm labor pattern, but there's enough going on that everyone agreed it would be good to check. I had a lot of contraction activity yesterday, so I'll be glad to get this test result.

5. Scott is actively working to lose weight. I'm glad for him and totally support it, but on the other hand, I'm getting weighed every 2 weeks and the numbers are staggering. I've officially gained 25 pounds now. So when I'm feeling particularly cranky, sore, and clumsy, hearing him talk about how much he's lost is a bit ... irritating. Far be it from me to throw cold water on his efforts... it's just amazing to me how this has happened every pregnancy! I keep reminding myself that I'll get my chance to celebrate in 6 weeks when I lose 15 pounds in one day.

New Words

I'm reading "Climbing Parnassus: A New Apologia for Greek and Latin" by Tracy Lee Simmons. It's about truly classical education -- that which is founded upon a study of Greek and Latin languages and of Greek and Roman history, art, literature, and thought. (Some also define "classical education" as study founded on the Great Books, most of which are translated into English from their original languages.)

I'm researching schooling options for Sam and am very attracted to both types of "classical education," though rather daunted by the idea of teaching/learning Greek and Latin. I'm guessing we can't afford the tuition at the area's classical school, or at most area private Christian schools (four kids, one with special needs and one with medical needs are rather expensive to raise, let alone educate!). So we're seriously considering home-schooling as an option (though not for Elli at this time).

In reading this book, I've had to run to the dictionary about every other page. Just before lunch I ran into back-to-back words I've never encountered before -- which means I didn't get much help deciphering their meaning from the context.

The sentence occurred in this paragraph on page 20:

"Climbing Parnassus [an expression that has come to mean studying Greek and Latin languages] once helped to form the unformed mind. The arduous ascent fostered intellectual and aesthetic culture within those who had endured the strain. It helped to bring mental and even emotional order out of chaos. And a classical training still provides the surest footing for the educated mind and a high perch from which to view other periods and nations. The foundations of the modern world are viewed more competently from this height. Poetry, drama, democracy, idealism, scientific curiousity, and so much else furnishing our minds are better grasped, and better judged. We drift without classics, floating on our own deracinated, exiguous islands. And we become fodder for demagogues. We need not a revolution, but a restoration."

The following are definitions from the American Heritage Dictionary:

de·rac·i·nate (də-rās'ə-nāt') tr.v. de·rac·i·nat·ed, de·rac·i·nat·ing, de·rac·i·nates
1. To pull out by the roots; uproot. 2. To displace from one's native or accustomed environment.
[From French déraciner, from Old French desraciner : des-, de- + racine, root (from Late Latin rādīcīna, from Latin rādīx, rādīc-; see wrād- in Indo-European roots).]

ex·ig·u·ous (ĭg-zĭg'yōō-əs, ĭk-sĭg'-) adj. Extremely scanty; meager.
[From Latin exiguus, from exigere, to measure out, demand; see exact.]

I love picturesque words like this.

Baby Knitting

Aren't these the cutest? One of the people I work with at the hospital brought them to my office yesterday! It always amazes me who turns out to be a knitter. At least, I'm guessing she made them herself.


While Elli was in the hospital, I did get some knitting done on Luke's little "all-in-one." I've learned that having a 7-year-old in the hospital is a very different experience than having an infant in the hospital. You spend a lot more time trying to entertain an older child, and they tend to get a bit upset with an adult who dares to find something to do other than entertain them!


This is the back, and I'm almost ready to start the straps that come up over the shoulders and fasten to the front.

We had a third fetal echo today, and learned that Luke's heart is looking much better than originally thought. It looks like, if the cardiac catheterization they do after he's born verifies the echo findings, he may only stay in the hospital for a couple of days! He'll still need corrective surgery/ies down the road, but things are looking up.

This also means it's a darn good thing I started his outfit early. If I want him to actually wear it, I do need to finish it before he's born since I won't have those days and days of doing nothing but sit at his bedside in the CICU. What a great problem to have!