Saturday, January 31, 2009

Stopping By Woods On A Snowy Evening

- Robert Frost
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

The little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound's the sweep
Of easy wind and downy flake.

The woods are lovely, dark, and deep.
But I have promises to keep,
And miles to go before I sleep.
And miles to go before I sleep.

Friday, January 30, 2009

Becoming Behavior

Many women look to Titus 2:3-5 as a model for the testimony of our lives:


The aged women likewise, that they be in behaviour as becometh holiness, not false accusers, not given to much wine, teachers of good things; That they may teach the young women to be sober, to love their husbands, to love their children, To be discreet, chaste, keepers at home, good, obedient to their own husbands, that the word of God be not blasphemed.


"...behaviour as becometh holiness..." .... I love that phrase!

What better encouragement as we seek 'behaviour as becometh holiness' than that of other women seeking the same thing?

And where do we go to find that?

At the well, just like women of 'olden days'! :)

Beginning this Monday, February 2, the website "At the Well.. In Pursuit of Titus 2" will be up and running offering encouragement to women as homemakers, mothers, wives, and daughters of the King! :)


At the Well Blog Button

Shall we gather at the.... well? :)
Check it out!


(and click here to find out how to be eligible to win great door prizes!)

Thursday, January 29, 2009

Snow on demand

A couple of days ago I mentioned a craft project Dale and I did together. As promised, here it is, a snowglobe in jar:

*Complete, simplified instructions at the end of this post*

A snow globe was one of the things we had on our list fun things to do before Christmas, but for one reason and then another it just didn't happen.

But Dale didn't forget, and asked fairly persistently if we could make our snowglobe. (As in, every other day for 6 weeks.) :)

As simple as the project itself was to do, gathering some of the supplies proved a little difficult. The most challenging was finding the centerpiece to go inside the baby food jar.

This little guy came from the seasonal aisle at wal-mart. He was the topper for a tube of Christmas candy.

To make him a little taller so stand above the rim of the lid and the ridges in the top (bottom after you flip it (of the glass jar) I added in a lego block for a little boost.

While the glue on your centerpiece dries, fill the jar about 1/3 full of glycerin. Should be in the pharmacy section at Walmart. Ours was with the first-aid stuff if I remember correctly.

The second time we went for it, that is. The first time we tried they were out. I guess everybody was making snowglobes for Christmas. :)
Anyway.... about 1/3 full of glycerin. Give or take.

Then add your glitter. I poured a little in the cap for Dale to put in himself.
We used just enough to barely cover the surface of the glycerin.

Fill the jar the rest of the way with water. Because I was doing this the lazy quick way, I didn't test it first to see how much water our little penguin would displace. I just guessed. We ended up with a little air bubble, but that's ok. ;)

Be sure and dry the rim of the jar.

Finally, squeeze a thin line of hot glue around the inside lip of the jar lid before quickly screwing it on.

Allow it to set for a few minutes (I love hot glue) and give 'im a shake!


Snowglobe in a jar:

Clean, empty baby food or other small jar
Plastic toy or decoration
Glycerin
Glitter
Water
Hot glue

Hot glue toy to inside of jar lid.

Fill jar approximately 1/3 full of glycerin.
Add a couple of pinches of glitter.
Fill jar almost to top, allowing for a little displacement by toy.
Dry top of jar well.

Squeeze a thin line of glue on inside lip of jar lid, and screw tightly onto jar.
Allow glue to dry before turning jar.

Ours was a little cloudy when we first turned it over, but once everything mixed it all cleared up and has remained that way!

If you're feeling particularly fancy you can paint the jar lid to match the toy or season. Obviously we weren't feeling fancy. :)

Wednesday, January 28, 2009

Odds and ends from my corner of the web

Weather report from the buffalo range:

Cold. Very cold. And semi-icy.

I spent a good chunk of time this afternoon re-arranging my living room furniture. Partly because of cabin-fever, I'm sure, but mostly because of the inspiration from
this post from The Nester. I haven't got it just like I want it yet, but I certainly got far today! (If you haven't visited The Nester's blog before then take the time to look around - it is beautiful, and filled with good ideas!)

Oops. I was going to let Daddy Buffalo be surprised by all the furniture arranging when he got home, but now he'll read it here first. So.. uh... surprise!

In other web-reading, MyfriendConnie at Smockity Frocks recently posted
an interview with her sister about her (the sister's) recent cochlear implants. I guarantee you will learn something and be touched by the story in this interview!

Tomorrow the boys and I will be venturing out in the cold. We'll be visiting the library, buying some groceries (the cupboards are looking a little bare!), and a couple of other errands.

We'll be starting the day going in to get Alan's regular lab work done. I am halfway expecting the results to be off as a result of the cold Alan currently has. For some kids a cold isn't 'just a cold', as Darcy of Life With My 3 Boybarians stated very well in
this post. It is definitely worth the read - a great insight into how little things can have a big effect.

Gotta go - I'm about to have a buffalo stampede on my hands if I don't get off this computer! Stay warm, and be sure and come back to let me know what you thought of some of these links! :)

Tuesday, January 27, 2009

I'm not crazy, I'm just blogging!

Some people talk to themselves.

I talk to my blog.

Seriously... I find myself randomly narrating my life, with an imaginary blog audience. I think I narrated inwardly before the blog too, but now the thoughts are geared toward you guys.

Even though the grand majority of what I tell you never actually makes it here to the blog.

And that is probably a good thing. ;) I've told you many times (in my head) that I love hot showers. Really. A very hot shower is one of my favorite things. So now you know.

Why do I do this? I have no idea.
Am I crazy? I doubt it.

Lonely? Perhaps.
I had a bowl of rice crispies late last night, and I think I enjoyed listening to them talk as much as I enjoyed eating them!

Of course, at that hour I should have been in bed sleeping. I usually am that time of night, but last night I stayed up and did a little sewing.

I made this!
Since I began sewing a few weeks ago, about half my pins have been in the little plastic box they came in and the other half have been loose in the bottom of my quilted used-to-be diaper bag that holds my scissors and other stuff.

So now they have a real place to live! And I won't get stuck when digging for the seam ripper.

Not that I need a seam ripper all that much. Ahem. Right. Moving on.

And yes, that IS the fabric I used for the apron. One of the few scraps I have to work with right now, but I thought was cute for this project. Which, by the way, I made following this tutorial.

Check back in later this week to see the fun little craft project Dale and I did today. I might even do a little tutorial of my own. :) That is, if we still have electricity following the pending ice storm. Brr!

Monday, January 26, 2009

Know, Knew, Knee?

Do you ever stop to think how much stuff is out there to be learned?

How many things we don't know? And don't even know we don't know?

And in addition to what we don't know are things that we think we know, but don't.

I've had an enlightening weekend - one thing I thought I knew and was WRONG, and another fun little discovery that I knew but didn't know I knew.

Are you confused yet? Good! I will now leave the generalities (and the words "know" & "knew") behind and move on to what I actually have to say.

Which isn't much, after all this buildup.

ANYWAY.... I have a phrase that comes in handy in all sorts of ways, and I have always used it as a Biblical truth.

Word to the wise: anything you hold as a Biblical truth you should be able to provide a Biblical reference to back it up.

I was very dismayed to learn that "all things in moderation" is not in the Bible. Similar passages you could use to argue a point, maybe, but not that phrase. Oops. Disconcerting.

And my other little discovery...

There is Veggie Tales song in which a character portraying King Saul asks the one playing David, "you aren't going to sing are you?"

When David nods in response, Saul then says, "Couldn't you just play your harp and I'll throw things at you?"

I have always, (as in, for the several years that I've known this song) thought this was a reference to people throwing rotten tomatoes at performers. Especially since the people were being portrayed by vegetables and all.

But today in the van it all of a sudden hit me what that REALLY meant!

As you may have already known or guessed, that line is actually a reference to the time Saul threw his spear at David while David was playing his harp for Saul. (I Samuel 19:9)

I'm not sure how long I have known that story, but it's been long enough I should have made that connection by now.

Makes me wonder what else is right under my nose that I don't know!

Friday, January 23, 2009

Chicken Spaghetti

Oh my goodness. I just-this-very-moment read Jennifer's comment about chicken spaghetti on my potpourri post and had to right-this-very-minute post the recipe.
Oooh friend you don't know what you are missing! Chicken spaghetti is one of my all-time favorite foods!

Once on a mission trip in college we all divided up and a different group cooked supper for everyone each night. Since I was the leader of my little group and spaghetti is good for a crowd I decided to make chicken spaghetti on my group's night.

Only - I made it from memory.

Which turned out fine except for one tiny thing. Actually it was one BIG thing.

I was waaaay off on the servings, and we ended up with about 3 times as much spaghetti as we needed. It was much like one of the
Strega Nona books from Tomie DePaola. You know the story when the magic pot keeps spittin' out spaghetti until the town is full up with it?

Except in my case it wasn't magic, just poor memory!

So - for Jennifer and anyone else missing out on this wonderful dish, here is our family's recipe, as made by my Nana and my Mama, for Chicken Spaghetti.

And in case you need to know, it feeds 8-12, depending on how hungry they are, how sides you have, and how many are men. ;)

Chicken Spaghetti

1 chicken, boiled and cubed
2 tsp salt
1/4 tsp pepper
1/2 c chopped onion
1/4 c chopped bell pepper
1/4 c pimento
1 tsp paprika
12 oz spaghetti, broken
1 can mushroom soup
1 c grated cheddar cheese


Cook onion and pepper in 2 quarts chicken broth until clear. Add cut up chicken, salt, pepper, paprika, and uncooked spaghetti. Cook 20 minutes. Add mushroom soup and pimento. Put into a 9x13 baking dish. Sprinkle cheese over top and bake until melted.

Man oh man I love this stuff. Served with a salad, garlic bread and Italian green beans (the flat kind) it makes an unbeatable meal! :)


funny pictures of cats with captions
more animals

Thursday, January 22, 2009

End of the day potpourri

Our Day in Review:

To eat:
bacon

tangelos
cereal
cheese
crackers
baby carrots
roast chicken
broccoli
ramen noodles
cookies

To do:
Lots of playing outside! It was beautiful today!

To learn:
Read Mirette on the High Wire (Five in a Row/FIAR) - Language Arts day: learned compound words.
Watched Youtube videos of acrobats.

For tomorrow:
FIAR Science - copper: we're going to shine pennies with tabasco sauce! And then practice walking our own 'high wire' balance beams.

Week three of Art Displays at the library is almost over and we haven't seen Remington yet! Also time to turn in the last 2 weeks' school books and get ready for the next 2.

There was quite a bit of leftover chicken tonight, so sometime this weekend I'll be making chicken spaghetti.

What is on your mind for the weekend ahead?

Tuesday, January 20, 2009

Learning something new

I'm not sure if I've mentioned it here before or not, but the past several weeks I have been re-learning how to sew.

I learned the basics in high school, but didn't stay with it much beyond my home-ec class and the bermuda shorts and alphabet pillows we made there.

But all of a sudden this fall I started thinking of things I wanted to sew!
So... (haha) I borrowed my mom's machine and called her 47 times a project.

And then.... Greg surprised me with a machine of my own for Christmas!

And all this leads me to.....

....the project I finished today.

A friend of ours is expecting a baby in March. Recently, almost apologizing for the silly apron she was wearing, she commented that her 'pretty' one didn't fit over her belly anymore.

So... (haha again)...

under the fine tutelage of my sewing instructor/mom, I made this:

(The ties in the back are the same white background/blue polka dots as the pockets and neck tie.)

I just think it is the cutest thing I've ever seen. Even if I did make it myself!

Do you sew? What things do you like to make?

Saturday, January 17, 2009

And I don't even have a newborn...

For some reason Alan has been waking up a lot lately.

Last night was no exception... he woke up at 12, 2, 4, and 6!!!!

I have no idea what the cause of this is. Greg is working today, (so I took all of these calls myself last night) but he says tonight and Sunday night he will be on duty. Hopefully it's just a little habit Alan has gotten in and we can stop it. Soon. Before I run out of makeup to cover the circles under my eyes!
Speaking of Alan...

Sometimes I bring him into the bathroom with me when I have a morning shower. Sometimes I just brave leaving him loose in the house with Dale, but today he'd already found the gum from my purse and a couple of pens, so un-supervision didn't seem like a good idea.

So into the bathroom he came. My shower was hardly started when bath toys started appearing at my feet.

While I appreciated the gesture, I didn't appreciate the breeze I got every time Alan opened the curtain, so I used the suction cups along its edge to seal it shut.

Toys still appeared - only now they were coming out from under the curtain. He was using it like a mail slot.

I wished for my camera to take a pic of all the toys at my feet, but I quickly rethought that - mostly because of all the water, and then add to that the fact that I was ... well... you know.... "in the shower".

And bless his little neatnik heart - as soon as I got out he started to put them all away!

Please pray for our friend
Bethany in the UK: She got a new liver yesterday! :) So far she is doing great, but I know her family would appreciate your prayers for her recovery and for the donor family.

Wednesday, January 14, 2009

video

Playing with my camera to see how to store videos on the new computer, but I thought since I went through all the wait to get this one loaded here I would leave it for your viewing pleasure. ;)

video

Back in the saddle again......

In celebration of finally having a laptop again (sure seemed like a long month without it!).... I present to you....
Our day - in pictures.

The boys played a little hide & seek / tent / peek-a-boo type game while I did boring stuff like check email.

Alan and I sang some fun songs - he on the couch, me standing in front of him like some kind of performer. But if I moved from my spot he directed me back!

Here he is on the ears verse of "Oh Be Careful"
He also really really likes Deep & Wide, but he looked so mad in the pictures of that! Dale didn't care for singing, so he was picking up toys.

Then we moved on to our craft project of the day. This week we are studying the character trait "creative", and I have several winter/snow crafts to do.

Today's was a cool idea my mom found at
this site. They call it "Make your own snowstorm".

It's super cheap and easy, requiring only dental floss and white dot stickers.
Dale did really well, although this project was a test in keeping my perfectionism in check.

See that pink arrow down there? I didn't correct that tragically mis-aligned dot, and was very proud of myself for not doing so! :)
The definition Dale is learning for "creative" is "doing something in a different way". He asked for picnic lunch today and wanted to do it creatively, by that definition. So I made a quick lunch and we carried upstairs. Which was a treat since we never do anything but sleep up there.

Back downstairs to do some reading in our current read-aloud:

Dale then spent most of the afternoon playing outside with his friends. He got invited to come to church with them for their kids program. Tonight happened to be Crazy Hat Night.

And since most of our stuff is at home and not here, I had to get creative and fast, since they were leaving in a little over an hour. And I had to feed him supper during that time!

So. Found one of Dale's caps in the van. That was lucky.

Dug around in the box of ornaments we took off the tree here and dismantled a pipe cleaner star (one of December's craft projects!). Stuck the pipe cleaners through the holes in the cap for antennae.

But that wasn't flashy or crazy enough for me, so I drew some eyes.

That was okay, but the bug was begging for a mouth. I thought it might also soften his look.

But no matter what I did, it still turned out angry:
Isn't that a mean-looking little bug grinning from up there?

And with the added bonus of Dale's I-need-a-haircut hair spilling through the cap, the bug had a mustache. (Kind of reminded me of this guy.) That's okay though. Dale liked it. :)

And while I was busy constructing bug hats, Alan was busy helping me cook. I was all watching out to make sure he didn't get into the markers and scissors when I was in the kitchen, and didn't even think about him getting into things in there when I wasn't!

Here is the result of him trying to dip batter for the cornmeal-pancakes:
I am ONE LUCKY WOMAN that he didn't dump the whole bowl of it on his head when he got it off the counter.

But, gentleman that he is, he stuck around to help me wash up after supper. Alan looooves washing dishes!
And that, friends, was our Wednesday. Another week half-way through! I hope yours is going well!

Please excuse the sawdust!*

Is it normal for 5 year old boys to snore?

Because mine does (like an old man), so I'm just wondering.

*You know.... snoring = sawing logs.... sawing / saw dust.... oh never mind. Little bit of a stretch, I know. I couldn't help myself!

Sunday, January 11, 2009

Alan's Story, Part 4

My apologies in advance, friends: this post is very long. But it wraps up a series I thought I could tell in 3 parts, and refuse to turn it into 5!

When we returned home on Feb 14, 2008, Alan was 7 weeks post transplant. We knew life with a transplant would come with its own set of issues, but we felt relieved that we had left the roller-coaster of liver disease behind us.

We had no idea we had already boarded a bigger, scarier ride than we had been on before.

Just 4 days after returning home, we reported back for a clinic visit and found that Alan's liver numbers were up (shown in a blood draw). Three days later, they continued rise, and still again at the next draw, so that, just 11 days after coming home, Alan was admitted to the hospital for a liver biopsy.

Increasing liver enzymes are a possible sign of the body rejecting its transplanted liver, and a biopsy is the only way to rule that out.

Thankfully, Alan's biopsy showed no signs of rejection and we returned home after just a couple of days.

At home, we were adjusting quite well to life after transplant. We had learned Alan's meds and settled into a nice routine giving them. This included checking his blood pressure a couple of times a day - something much trickier with a toddler than an adult!!
Our biggest project was training Alan to go to sleep on his own. Our month at the Ronald McDonald House had been exhausting - mostly because Alan did. not. sleep. But we began to make progress, and it was all worth it to see how good Alan was feeling with his new liver!

The only places Alan went were hospitals and private homes. Greg and I took turns taking Dale to church, the other staying with Alan. When Alan went to the hospital, he always wore a mask.

His labs were checked weekly, and often locally, instead of having to make the long drive to our Children's hospital.

One morning in March, Alan woke up with a fever, which led to us driving him to Dallas and being admitted for a couple of days. No explanation was found, and we were allowed to return home, but his lab numbers weren't all where they should be.

They fluctuated on their own, and then, one morning in April, Alan again woke up with a fever. This time we took him to the local ER. They got checked him out, and even though the fever had come down, Alan's team still wanted to see him, so, again, we drove to Children's ER.

Turns out we were extremely glad to be there. All day and into the evening in the Children's ER, Alan got sicker and sicker. My mother was with me, and the two of us began to see sign after sign of what Greg and I had seen sepsis look like in January. Sure enough, the ER staff saw it too, and treated Alan accordingly. That night, Alan was admitted to ICU.

We could see and feel God's hand over the whole situation. Where else in the world would we have rather been on that day that at Children's?

After just a day in the ICU Alan was transferred to the regular floor, and, although he was tired, he otherwise looked great, and we were allowed to go home after just a couple of days. There was speculation about what might have caused this episode, but nothing definite to go on.

(Interesting story from this April stay: At 4:00am one night on the regular floor, I was awakened by Alan's nurse touching my knee. I came awake in a strange mixture of grogginess and alertness to hear her say, "I'm taking his crib into the hallway..."

huh?

She continued after just a breath - "...there is a tornado warning."

Yikes! Mom and I followed her and Alan and Alan's crib to the hallway to join all the other patients and families and wait out the storm, which, thankfully, passed uneventfully!)

Back at home, we immediately jumped right back in to what was becoming familiar, and would later be an obvious pattern.

Labs began to creep up.

Less than three weeks after being home, they were up enough to warrant another biopsy.

Back to Children's we went, bringing Dale with us. If we were going to be there for a week or so for rejection, why not get a room at RMH and have the whole family along, right?

But the biopsy showed no rejection, and were sent home after only two days, much sooner than anticipated.

Only to return to the local ER less than 48 hours after our release with the worst fever yet. We began to see just what we had seen less than a month before in another ER, only this time, Alan got worse a lot faster. A lot of phone calls were made between Alan's team and us, and Alan's team and the local ER, which led to the Children's transport team coming to get Alan in their own ambulance.

By the time they arrived Alan was very sick, and we were very frustrated at not being able to do for Alan all we knew he needed. Seeing the Children's transport team come in with that logo on their uniform was a blessed sight!

This would turn out to be a long visit for Alan. For the first time, he was found to have bacteria in his blood. And a very mean one, at that - more scientifically known as a gram-negative rod (GNR). Because of the identity of the bacteria (this one happened to be e.coli), Alan remained in the hospital on IV antibiotics for 10 days.But as usual for Alan, after a few days on antibiotics he was doing wonderfully! The rest of the stay to finish the course was very routine.

We were only home 10 days when yet another fever struck, and we once again headed to the local ER. Although he didn't seem quite as sick this time, the Children's transport still came to get him, this time in their airplane.

It was my first time to fly without motion sickness protection, and I'm sure due to nothing but answered prayer, I did just fine. Not only did I not get sick, but I experienced such an incredible peace, flying through the turbulent clouds, with nothing to listen to but the loud rumble of the engines. I felt God's presence in that little plane.

In some ways this trip was much the same as previous ones for Alan - fairly rapid recovery after a few days of iv antibiotics, only this time was another GNR bacteria. In others ways, it was a clear turning point.

Alan's team launched into an all-out search for answers to the cycle that by this time had become quite clear. As I said in Alan's online medical journal at the time, "We are in a cycle of him becoming "stinking sick" (as one of his doctors said this morning).... needing some intense care... to thriving while on the powerful antibiotics... and then we go home and the clock starts ticking until it all starts happening again."

During this 14-day treatment and search for answers, Dale once again came to stay and we got another room at RMH.

Soon, all conditions but one were ruled out. Finally, Alan had presented enough clues that his team felt certain enough of a possible explanation. We were presented with two treatment options. The first was to change his medications and then wait and see. If Alan got another infection, then it would be time for intestinal surgery.

The second option was to go ahead and schedule the surgery without waiting. Of course, both options had their advantages and disadvantages. We had a lot to think about.

Alan was dismissed from the hospital with the medication changes, and we had the option of calling at any time to ask for the surgery. It was one of the greatest responsibilities we have felt as parents.

At each lab draw following that we became more and more comfortable with the idea of waiting for the surgery. To see if time (and Alan's growth) and the medication would solve the issue.

The first half of the summer passed pretty uneventfully. Alan's labs looked good, and at one point he was not scheduled to come back to clinic for 3 months! Even at that, the fear of the next fever always lingered in the back of our minds. We did our best to trust God's protection for Alan, but the question was always there.... would there be another fever? When?

In the meantime, there were other issues that troubled us. Alan hadn't grown more than a centimeter or two since at least his first birthday, 7 months before. He was still wearing the same shoes he had been before transplant. I pulled out the pair of winter pajamas he was wearing the night he was called for transplant and they still fit perfectly.

So, before the 3-month clinic visit, we returned to Children's for what was supposed to be a quick nurse & dietitian visit and weight check.

However, the labs that had been drawn that morning came back with an abnormal result.

Because of the medication changes 6 weeks before, Alan's immune system was severely suppressed - much more so than normal even for a transplant patient. The lab that showed this result was repeated a few days later, and, sure enough, the condition was getting worse. Alan was now at severe risk for infection - a concerning thing at any time, but downright scary when you consider we were pretty much watching and waiting for the next fever. If that happened now, it would be a seriously life-threatening event for Alan.

However, in an odd sense of irony, the 'fix' for the neutropenia was to stop the daily antibiotic Alan had been on for 6 weeks to prevent another infection.

So, while Alan's immune system was practically nonexistent and at severe risk of infection, the medication he was on to prevent infection was dropped. Completely.

We felt like we were walking a high wire and our safety net had just been taken away. Our only choice was to trust God and his sovereignty. And pray. A lot.

And, with a big sigh of relief and many prayers of thanksgiving, just 10 days later (although it seemed a very long 10 days) Alan's labs showed his immune system had recovered, and the antibiotic was added back in.

Which was proof of God's amazing care and timing, because just 19 days later, Alan woke up with a fever.

Our response was pretty routine by this point. Make a mad dash for the local ER, contacting Children's on the way. Local ER starts IV fluids and obtains blood and urine for cultures. Does a chest x-ray. Another ambulance ride to Children's. Another admission to ICU. Another positive blood culture for GNRs.

While waiting in the local ER I couldn't help but realize that we were only 4 days away from Dale's birthday. He and I had been planning his party for weeks. I knew this admission would last long beyond party day, and I cried. In the grand scheme of all we had to worry about, one birthday party should be seen as minor. But in the wee hours of that morning, the cycle had worn me down, and my heart hurt that the party we had planned wouldn't happen.

As usual, Alan did well with the IV antibiotics, and by Saturday (party day) he was feeling great. Dale and four of his grandparents came, and they, along with Greg and Alan and me had a wonderful birthday party, right in Alan's room. The only thing missing were the candles on the cake. Because setting off the sprinkler system did not sound like our idea of a good day!
We have been asked often over the past two years, "How is Dale?". While I am sure that such disruption in a little boy's life has to have some effect, Dale has done very well.

Any time we are away from him he stays with grandparents or great-grandparents. He gets one-on-one attention (something all kids enjoy!) and often special treats in the way of fun things to do, places to go, stuff to eat, and yes, even new toys sometimes.

He loves visiting Children's, and whenever possible, we have enjoy having him there with us. Both Children's and RMH have truly 'thought of everything' and go to great lengths to include and take care of patients siblings. In fact, many times even though Alan was either too sick or too young to take advantage of things offered, Dale was able to enjoy them to the fullest!

A couple of days after Dale's birthday party, Alan received a PICC line in his arm, which allowed us to finish this 10-day course of IV antibiotics at home. And of course, before we left the hospital, plans were made for surgery in 3 weeks.

Alan was admitted on Sunday night before surgery on Monday. Again, his hospital room filled with family as everyone wanted to personally give him hugs and kisses before he went into surgery. And of course, be there for us. ;)

Alan came through the surgery with flying colors. The surgeon appeared long before we had been told to expect him, with a big smile, and a huge air of relief and confidence. Not overly confident in himself, but confident in what he had seen inside Alan: the problem was clear, their guesses correct. And while he still couldn't give a guarantee, we could see it was all he could do to keep himself from promising that this had fixed it.

He did say that if Alan was fever-free for three months, we could all know this problem was behind us.

Alan's recovery went fantastically. In fact, he was dismissed from the hospital only 5 days after surgery! We were back and forth to Children's often for a couple of weeks for him to be monitored, and finally for his staples to be removed.

And there were no fevers. And his labs looked good.

Alan's second birthday came and went, with much celebration.

And still no fevers. And labs looked good.

He was doing so well that when his doctor had to be out of town suddenly, Alan was one of the kids doing good enough that his regular checkup appointment was moved to 2 weeks later than planned. :)

By that appointment, even though we were still 2 weeks away from the 'official' 3-month mark, I think everyone had seen enough to know: the infections were over.

Life finally seemed normal again.

Of course, it was at that same appointment that Alan's liver enzymes came back unexpectedly elevated. He was sent immediately for a sonogram, scheduled to come back in two days for more lab work, and tentatively set up for a biopsy.

And we were reminded that this is our new normal. Even though we are past one crisis, managing Alan's care is always there. Some days it is as simple as giving his medications. Other days it is more. But we have learned through it all to trust God with everything, because he is trustworthy, and to be thankful for all things - the good and the 'bad'.

It turned out that the most recent bump in numbers was a passing thing, and by the next blood draw had returned to normal on their own. No biopsy this time. (See?? I told you God was trustworthy!) ;)

We were able to celebrate Christmas, and Alan's 1 year transplant anniversary, and the New Year at home and with family, in good health.

This journey through liver disease and transplant has also taught us to take life one day at a time. We don't know what the future holds for Alan. For that matter, we don't know what the future holds for any of us. But God does. He is in control of all the things we can't see, or know, or plan for. And he is ready to take control of all we will give him. Because he can handle any of it much better than we can anyway. :)

Thursday, January 8, 2009

Could you use that in a sentence please?

Yesterday I was asking Dale to spell a series of words out loud: 'has', 'the', 'ran', 'and', & 'faith', our character trait for the week.

After he spelled his words he turned the tables and said, "Now you spell..... 'synagogue'."

Whaaaaat?!?

Synagogue!???

But I didn't ask any questions. I just spelled it!

**********************

We started back with regular school plans this week, after a month or so of this & that around Christmas. We are going to spend the spring alternating between finishing our character traits book and working our way through Five In a Row, Vol II.

This week is 'faith'. Instead of memorizing a Scripture on faith, Dale is learning a simple definition (believing God will do what he says) and the poem "I Never Saw a Moor" by Emily Dickinson.

Next week our character trait is 'creativity'! I've got some fun things planned for that one! :)

And finally.... I promise, Part 4 (which should bring us up to date) of Alan's Story should be coming soon.... maybe this weekend??

***************

I Never Saw a Moor

Emily Dickinson

I never saw a moor,
I never saw the sea;
Yet know I how the heather looks,
And what a wave must be.

I never spoke with God,
Nor visited in heaven;
Yet certain am I of the spot
As if the chart were given.

Tuesday, January 6, 2009

Look! An award!


Karen at Candid Diversions sweetly passed along this "lovely" blog award:

Thank you!

And although I am *supposed* to pass it on to 7 others, I don't think I have EVER fulfilled the number requirement on any meme or award.

I feel like I have been rather scarce in the blog world lately, what with all my computer woes. (Every post you see here comes from a borrowed computer!) I certainly appreciate all of you still coming by to visit now and then (and especially all of your wonderful comments on Alan's Story! )

And now... I pass this award on to a few of the lovely blogs that I read (when I can get my hands on a computer, that is!):

Mom to 5 Kids

Smockity Frocks

5 Little Wolfs

A Familiar Path

Simple Journeys


Now y'all don't feel obligated by this award or anything. I enjoyed knowing receiving it and I hope you do too! :)

Sunday, January 4, 2009

Alan's Story - Part 3

In the days immediately following transplant Alan did very well, considering the major surgery he had just come through.

After just a few days there was talk of moving him from ICU to the regular floor. But about this same time, three or four days after transplant, Alan's progress began to slow. He started having fevers and trouble with his lungs, and the move to "the floor" was postponed.

Family and friends brought this need to God in prayer, like they have done many other times on Alan's behalf, and in another day or two, Alan's lungs had improved and the ICU and transplant teams again began discussing moving Alan to "the floor".

And then the fever came back. And once again, the move was cancelled. By this time, it was definite that Alan had an infection of some kind, but it couldn't be identified or pinpointed to a specific location in his body. That would take time.

Also by this point, Alan not only had a mystery infection, but he had fluid in his right lung. He was scheduled to go into the Operating Room the next day for a scope and a fluid sample unless there were specific improvements.

Sure enough, the next day Alan showed just enough improvement to avoid the procedure. Prayer again? I'm certain! In fact, Alan was looking good again on all fronts. Good enough that the family who hadn't left our side in a whole week (other family was just as invaluable - taking care of Dale!) decided to head home for a couple of days. The family keeping Dale needed to be relieved to return to work. They planed on taking the opportunity to do some laundry and check in at work before coming back to Alan. Although Alan still had quite a bit of recovery still ahead of him, things were looking pretty good, and it was going to be down to just me and Greg for a couple of days.

One year ago today, about 10:00 on that Monday morning (January 7th), Alan's transplant surgeon and other doctors came in for rounds. There weren't any major changes at that time, and they all gave nods of approval at Alan's progress. Soon after that Alan's nurse came in and gave Alan some medication through one of his IV lines before going in to see another patient.

She hadn't been gone long when something about Alan caught my attention. Something wasn't right. His breathing was labored and shallow, his color was a little unnatural, and he had a strange look in his eyes.

For a moment or two I paced between Alan's bed and the door to his room, looking for our nurse, but the hallway was empty.

I didn't know what was wrong, but I was growing more nervous by the second, and although I didn't want to leave Alan's side, I was more afraid of not getting the help he needed. Thankfully, that was the moment Greg came into the room and he turned right back around to get a nurse.

When the nurse came in and saw Alan's condition, things started happening very fast. For the next hour, 11-13 medical personnel were in Alan's room at all times. Greg and I sat off to the side, out of the way, watching and listening in awe.

We are so thankful that we didn't know and understand then what we know now.

We would have been terrified.

Alan was in septic shock.

At the end of the hour, the baby who had been giving little smiles and waves just that morning was sedated with a breathing tube and several other new pieces of medical equipment. The floor was littered with dozens of wrappers and packages that had been hurriedly torn open and tossed aside, their contents used to rescue Alan from the bacteria wreaking havoc in his body.

The infection that had only been a mystery before had suddenly revealed itself. It was living and growing in Alan's central line - a major IV in his neck. When the nurse had given the medication that morning, it set off a chain reaction that she later described to us as being "like a bomb going off in his little body."

Alan had a vicious bacteria growing in his blood. His had pneumonia in his right lung, which was also partially collapsed. The right side of his diaphragm was temporarily paralyzed from surgery. To deal with these issues, in addition to just having had a transplant, Alan was seen by a hepatologist (liver specialist), a transplant surgeon, a pulmonologist (lung specialist), a nephrologist (kidney specialist), a physical therapist, respiratory therapist, infectious disease, the ICU resident, and his nurses. For at least 24 hours after the septic shock there was a nurse in Alan's room at all times.

The doctors cautioned us more than once that Alan was "a very sick little boy", a phrase we would later come to identify as one carefully veiling a more serious message. They prepared us for a long slow recovery. Once again, the prayer warriors went to work.

And just one week later, the doctors shook their heads in amazement, their smiles wide as they entered the room to see Alan sitting up, playing. One commented, "you don't see that every day". Another called him their "star". The Great Physician had taken modern medicine and gone a step further. God's healing in Alan's life was obvious.

Later that very day Alan was finally transferred to "the floor", and just 3 days later he was dismissed to the Ronald McDonald House!

He still had a long road ahead of him, but the leaps and bounds he had made in just over a week were amazing!

While staying at the Ronald McDonald house during the next month, Alan had blood work and was seen twice a week in clinic. We spent our time learning the dozen new medicines, doing our best to get Alan to eat, and trying to teach him how to sleep again. He was readmitted to the hospital once for a biopsy.

Finally, on Valentines Day, after 7 weeks away, Alan came home and ate supper in his own chair, and slept in his own bed.

He had a new liver, a new scar, and a new lease on life. Or so we thought. Little did we know that some of Alan's scariest moments were yet to come.

Click here for Part 4

Friday, January 2, 2009

Alan's Story, Part 2

Alan was just shy of 3 months when we returned home and began life with liver disease. Or, more accurately, life with the knowledge of liver disease. He had always had it. But now we knew.
Knowing changed pretty much everything. It meant weekly trips to the hospital for heel-sticks to check Alan's liver function and bilirubin levels, and frequent visits to the pediatrician to check his weight gain.

Knowing brought a very large, looming question mark into our lives. The surgery Alan had (a kasai procedure), is the only treatment for biliary atresia (BA) and has no guarantees. A surgeon does his best work, and then everyone waits. Ideally, it will work immediately, wonderfully, and for a long time. But this is rare. More often it works okay, or for a little while. Sometimes it doesn't work at all.

Only time would tell. And so, our first wait began.

We would find out later that when Alan went back to Children's for his first post-surgery follow-up in February, his team considered him a very sick baby with a failed kasai. Thankfully, they didn't tell us that at the time, and we rejoiced over every little baby step he made. If his bili dropped 2 points (instead of the needed 10) we celebrated.

And little by little, Alan's blood work showed improvement. Week by week his yellow skin and eyes lightened. God was answering prayer. Not only was He giving Alan liver function, he was carrying us through what could be a terrifying time with peace and strength.

At Alan's follow-ups in March and April his team was amazed at his progress. His labs looked great. His weight gain was right on track. (Nutrition is a big concern for liver kids.) We were beginning to wonder if we might be one of the lucky ones whose kasai would last for a while.

And then we were reminded of how fast liver disease can turn.

Three days after the April visit to Children's we discovered Alan's tummy was filling with fluid, a common symptom of liver disease. The change came so suddenly that even his excellent team at Children's didn't quite seem to believe it and instead of seeing Alan themselves, they had the local pediatrician follow him for a couple of weeks.

Sure enough, the trend continued, and after 3 weeks Alan's little tummy was swelled like a balloon, his skin pulled tight across it and his belly button popped out from the pressure.

We were asked to return to Dallas a full 3 weeks earlier than scheduled - the first time (of many) an appointment would be moved up. We were nervous going into that appointment. We felt pretty strongly this would be a significant step in Alan's journey.

We were right.

Alan's doctor explained that a fluid build-up (ascites) generally signals the end of a working liver. Once you've reached that stage you don't go back. Things don't get better.

So just three weeks after a glowing report, we learned that it was time to list Alan for transplant.

Our minds were reeling, but there wasn't a lot of time to dwell on it all, because things began moving rather quickly. The next week we went through the detailed, 2-day process of being evaluated for transplant, and the following week.... Alan went on the list.

Thankfully, all this hurry was due to the way Alan's team likes to do things, and not because Alan was in dire shape. Their preference is to get a kid listed as soon as they see a need, and not have to scramble later if a patient makes a sudden downturn. Since we had seen first hand how quickly liver disease can progress, we were very happy with how timely things were done.

Since Alan was so relatively healthy for a baby needing a new liver, the hope and plan was to wait as long as possible before accepting an organ offer.

But going on the list wasn't the end of the spring's whirl-wind of activity. The day Alan went on the waiting list he was also admitted to the hospital for the first time since his surgery:

His failing liver was finally taking a toll on his nutrition, and it was time for a supplementary formula.... to be administered through a feeding tube in Alan's nose. (NG tube) I was trained on how to place the tube and use the feeding pump, and we were sent home.

After that, time passed pretty uneventfully for Alan while he waited. He was admitted to the hospital three times: once immediately after getting his feeding tube (a fever, probably a reaction to a vaccine he had received), and twice in November (the Fridays before and after Thanksgiving). (You can read about those 2 stays
here and here.)

The months spent waiting fell into a fairly predictable pattern. Alan didn't sleep well. He never had. He had to be held - a lot. And he woke up - very often. Because of the ascites and the NG tube feeds that lasted around 10 hours overnight, we propped him up to sleep.

Alan also didn't eat well. Sometimes he would try a bite of this or that to be a good sport. Usually he would pinch his lips shut and turn his head whenever food was offered. He would have a favorite that would last for a little while, and then he'd give up on that, and maybe move on to something else.

He also took lots of medicines and vitamins. Getting the NG tube was a blessing when it came to those meds, because he didn't have to taste them anymore. So even when things were going great, liver disease still followed us. No matter where we went or what we did Alan still didn't eat or sleep well, and still took a handful of medicines and a stinky formula through a tube.Finally ... after 7 months of our holding pattern, we got The Call. The call that would change everything. The call that said some family, somewhere, had experienced an unimaginable loss and had decided to give through their grief.

In the middle of the night, we called family members, loaded up our baby boy and drove away.

The next 20 hours stand out in vivid detail, and are followed by 9 days of blur.

And then came the tenth day - a day I will never ever forget.

Click here for Part 3