Tuesday, December 30, 2008

Alan's Story, Part 1

One year ago today Alan received a liver transplant. For him, it was the beginning of a second chance at life. But it wasn't the beginning of Alan's story. I have been working on this post for a while and I thought today would be an appropriate day to share it.


Alan was born in November 2006.

He cried. A lot.

At first we called it colic, even though he didn't exactly fit the 'classic' symptoms of colic. He was also a little jaundiced. On him it was more of a pretty olive color than yellow, so it was hard to notice. Especially at first. There were also a couple of digestive issues - some things that were just "not right".

At a visit to the pediatrician when Alan was 9 weeks old, the dr. decided to run some extra blood tests "just to be sure" nothing major was going on. When we got home that evening there was a message on the answering machine from his office letting us know they had results, but by that time it was after closing time.

I called first thing the next morning and was put through directly to the pediatrician. Even in my inexperience, my gut told me that was a bad sign.

I was right.

The doctor explained some of the results had come back abnormal, which could point to some "plumbing issues" with Alan's intestines. He was in touch with our nearest Children's hospital to give us a referral to a gastroenterologist (GI).

When that appointment ended up being the very next day, our hearts sank a little more. Without knowing any specifics, the internet wasn't much help, and the most we could to was wait. That was a very long day and night.

Greg, my mom, and I set out early the next morning in freezing rain with an infant Alan for the 100 + mile trip to Children's.

By the end of the day, Alan had had a sonogram and bloodwork, been seen by a GI, and was being admitted to confirm his diagnosis.

To say this was new territory for us would be a massive understatement. I think we all 3 bit back tears (and the urge to turn and run) as we were led into a child's hospital room. A metal crib? Cheerful wall-paper? All that medical equipment on the wall? It didn't fit. It wasn't right.

But it was.

That was a Wednesday. On Thursday Alan went in for a liver biopsy, the results of which pointed even more strongly toward a diagnosis of Biliary Atresia (BA). (In short: a withering of the bile ducts leading away from the liver. The liver cannot drain bile and is subsequently poisoned, which leads to cirrhosis.)

Surgery - the only way to truly confirm a diagnosis of BA - was scheduled for the following Monday. I don't know what we did all weekend. I do remember it was around this time we saw Alan's first smiles. They were like seeing sunshine through the rain.

We didn't know what to pray for as far as the outcome of the diagnosis. At that time we knew so little about BA. Was that the diagnosis we 'wanted'? Were the other possibilities better? Worse?

We prayed for Alan's safety through the surgery and the wisdom of the physicians. We heard fairly quickly, that yes, Alan did have biliary atresia, and the surgeon was going to proceed with the only treatment there is - a kasai procedure.

Alan recovered well from the surgery and we left the hospital 9 days later with our 11 week old baby. He had a scar, a handful of prescriptions, and liver disease.

We were in a whole new world, and would never again be the same.

Saturday, December 20, 2008

..and stay by my cradle...

Tomorrow is the Sunday before Christmas! I've been looking forward to that almost as much I have been Christmas Day itself.

Greg and I will be doing our piano/trumpet duet - Silent Night.

Dale will be singing Away in a Manger again, and also singing with the other kids.

My sister and one set of grandparents are going to be there. Yay!

We got home tonight and I sat down at the piano to play through everything for tomorrow. Dale was putting on his PJ's, but Alan was right nearby.

As I started playing Away in a Manger, Alan grabbed the nearest piece of paper he saw for his 'music' and started singing along with me.

Jibberish for some of it, but often singing the correct word at the end of a line. To hear him sing the words "Jesus", "sky", "lay", "wakes" and others was unbelievably sweet.

My heart melted. Like a big old mushy warm marshmallow, all oozing everywhere.

My baby. Singing a song.

A beautiful Christmas lullaby.

It made me feel so so glad all over again that he is here with us. That he is healthy and happy and we are over the big hurdle of transplant.

Not much later I picked him up to hug him and love on him, and tell him how much I loved his singing.

The stinker bit me! (Something I've hardly ever seen him do!)

Love fest over.

But I don't want to ever forget the beautiful baby face and his precious, sweet baby voice singing that song. Before kids I never knew I could love someone so much.

"But Mary kept all these things, and pondered them in her heart." Luke 2:19

Friday, December 19, 2008

From tears to tacos

I got word today that our computer doctor is not going to be able to save anything from our laptop.

As in 'no data'.

As in 'all the pictures I have taken in the last 12 months'.

I cried.

And then I called Greg and cried to him.

And then I called my Mom and cried some more.

It was a sort of grieving, I think.

NO I hadn't saved them anywhere. Backed them up. Anything.

I know. Believe me, I've learned my lesson.

But - my mom the librarian went right to work and after some quick research told me there are companies that specialize in data recovery. For a *small fee* (ahem) you ship your disabled computer guts to these fine folks, they go into what they call a "clean room" (a dust-free environment) and disassemble the hard drive and rescue your data.

So there is hope.

In the meantime I am trying not to think about it and trying to keep it all in perspective.
While a devastating loss in my mind, it wouldn't be the end of the world.

Right? Right??

In brighter news, we are staying in a hotel tonight - visiting family tomorrow. Dale can't remember the last time he was in a hotel. And he is thoroughly enjoying himself.

Upon arrival: "Look at this! Look at that!! It has a TV!!! You can see out the WINDOW!!!!"

Imagine his excitement when we presented his swimsuit we had smuggled along and Daddy took him swimming in the indoor pool.

And to answer
Jennifer's question (thank you so much for making me laugh at our technological infirmities! - posting fairies - haha!)..... my previous post was done from my parent's computer. This one is coming to you courtesy of Greg's work laptop, which usually stays at work, but has come home for the holidays - lucky me! :)

Y'all have a good weekend!

P.S. - My sincerest apologies to housekeeping: despite my best efforts it STILL looks like a taco exploded near the window. That's what happens when a 5 yr old perches on the edge of his seat and eats a fast food taco. Next time we'll pack PBJ's. :)

Monday, December 15, 2008

They are just THINGS... right?


Y'all.

So I already told you our laptop fell ill. This was on Thursday afternoon.

Guess what happened Sunday evening?

The back-up 'old' computer crashed. And I do mean crashed, as in it was working one minute and the next appeared to no brain. Blank screen. No matter what we tried. It was a sad, sad moment.

So... long story short.... I am completely computerless.

And fairly fed up with technology.

I think I'm going to light a lantern and read a book.

And maybe someday I'll pop back in here to tell you about it. ;)


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.

.

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Oh you KNOW I'm kidding. I'll be blogging the very day I have a working computer in my possession again... if not before!

But in the meantime, that lantern & book idea does sound kind of cozy!

Saturday, December 13, 2008

Saturday Shorty

Y'all are all aware that there are only 12 days left until Christmas, right?

11 if you count down to Christmas Eve, which I do.

We have a Sunday School party tonight. I'm bringing an olive cheese ball and fudgy mint cookies. I'm so tired of making cookies. I've lost count. Next year I think I'll bake a cake!

Had some holiday fun out with Dale last night, I've got a little video I'm hoping to post soon.

But for now, I've got to go get ready for our party!

Happy Saturday! :)


Oh yes... one more thing. My laptop is in the computer hospital... appears to be in a coma. No diagnosis or prognosis yet. I'm just hoping the doc can rescue my pictures!! I'm also wondering if it is contagious or coincidence?

Thursday, December 11, 2008

Online Dolch Word Games

I love this website! It's great for learning to read and/or spell Dolch words. Yay! Dale played it and loved it!

That page came from
this site, which has even more games.

At the bottom of either page, you can click "Back to Room 108" which takes you to
this page, with links to pages on Science, Math, and other subjects.

Just a little treasure I found this week and thought I'd share! :)

And a partridge in a pear tree

A few pictures from our Wednesday evening.

Dale helped get ready for supper.
Cheerfully, I might add!

He was plucking eyes from potatoes.

See?


After supper, Alan put on Daddy's shoes.

He reminds me of one of those wiggly-eyed pom-poms with feet.


We admired our tree.
I admired our tree while playing with my camera's settings:


We all played a little of this:


Read this book together:

Which made Daddy Buffalo think of a video on youtube to show Dale.

Alan watched too.


He didn't seem impressed.


He was a little perplexed:



And he certainly didn't approve!



Against Alan's recommendation, here is the video they watched. But don't say Alan didn't warn you!



Tuesday, December 9, 2008

Photos and Phonics

Had a little surprise get-together for my Dad Sunday evening in honor of his birthday. The four of us were waiting at my parents' house with fast food cheeseburgers and a birthday cake when they got home from church.

Of course, Gramps saw our car in the driveway, but I still wanted to catch the look on his face when he discovered the cake (with lit candles!) waiting for him: Oops. That's my photography skills for ya.


He was nice enough to pose. And Mimi said "surprise" just for effect:
We go all out for a party. ;)


Skip ahead to today...
Thanks to a link my mom sent me, I decided to have Dale spell some words with beans. Except instead of beans we used those toddler "puffs" because we have lahhhhts of them.

Dale's were for spelling, Alan's were for counting.

More accurately, Alan's were for "playing along" with school.



Okay, so Alan's were more for eating than anything.



Dale did pretty well. I tried this method because while Dale is an excellent reader, he isn't really big into writing.

And I'm ok with that, for now. He's 5! But I don't want to wait on phonics and spelling until his writing skills (and mostly his patience for writing) catches up with his ability.

So we are working on ways to spell and practice phonics other than just writing. I'm sure we'll do this one again.

Here is one of our words for today.... "and". Ok, so it says "anb". About every 4th time he encounters one, he will switch a lower case d or b. Again... I'm not worried.

After "and" we did this:
And I had Dale choose a letter to put in front of it to make a word. By this time, he had help:



In spite of his help he managed to choose and create 'h' for "hat" -

After this we moved on to a Christmas craft project we've been gathering supplies for for a while now. (how could i have said that to avoid the double 'for'?)
Anyway.... finally got all our supplies bought and together, and found out super glue was NOT what we needed. We'll have to try again when I have my hot glue gun. Yes, there will be a post on this little project when it is completed. :)

Dale was disappointed, but recovered well after some time outside. There was a short window of sunshine today between the rain leaving and the cold arriving!

Sandwiches and tomato soup for lunch. That is when I got the following video to show you.
First, be assured, I do not usually feed Alan. He's been feeding himself for a long while. But come on.... tomato soup? I didn't mind helping him out.

Anyway, please do notice the slurping. Who taught him that!?

And yes, Dale said, "what if we got all our food from ebay?"
(he also seemed to be doing his fair share of slurping. Where Alan learned it perhaps...? hmmm)

It's never dull around here. Yesterday Dale asked me: "Who do we know that is older than dirt? How old is dirt?"

How do you answer a question like that!? Thankfully, he didn't really seem to want an answer to that one. I think sometimes he just asks to hear himself talk. Like "what if we got all our food from ebay?"

Don't think for a minute he wasn't aware of that camera pointed at his little brother! :)

Monday, December 8, 2008

Seeking the Prince of Peace

"For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace. " Isaiah 9:6


Couldn't decide what to post tonight... decided to share something pretty instead.

Around here we are trying to put a little Christmas into every day, to enjoy the journey instead of constantly preparing for and counting down to a big event. Jesus is the Prince of Peace... what a shame for that to get lost in a lot of unnecessary stress and hurry.

I know I am not alone in these thoughts. You hear it some every year, but slowing down and cutting back seems to be especially prevalent this year. I'm glad. I think Christmas is a perfect example of a time when less really is more.

Is your Christmas going to be "more" this year?

Saturday, December 6, 2008

Eating carbs and decorating the yard.

Dale: Why did you take a picture of your breakfast?

Mama: Because it was fun.
This is actually of my second breakfast. The first was a banana muffin left over from yesterday.

And then, there was a third. Greg came home with leftover donuts. "The best donuts ever."

So of course, I had to try them.

They were pretty good. I don't know about best ever, but we ate them all.


Today was a date I have had marked on my calendar for quite some time. (unrelated to the donuts)

It was the 21st annual Christmas parade benefiting our Children's hospital. And it was on tv!

This is the first year we have heard of it, and we definitely wanted to watch.

We all loved it!
It is amazing the fondness we feel for that place. It was great to see it getting the publicity it got today!

Then it was time to do a little of our own Christmas-ing. We've been meaning to get to the lights for several days, but weather hasn't cooperated. Weather and Alan's extra trip to get bloodwork, but that's neither here nor there, right?

Anyway... Greg is in charge of lights around here.

He likes these:

The boys and I were underfoot nearby, ready to help.



Dale was pretty excited.


He got almost as excited afterward about going to the bank with his Daddy.

I guess life is just exciting when you are 5.

Alan stayed home with me and had his lunch. I loved his crossed ankles:

How did you spend your first Saturday of December?

Friday, December 5, 2008

Thinking outside the box

Dale and I studied 3-d shapes recently.

Or Geometric Solids, as our poster says. :)

Whatever you want to call it, we were learning how a square you can hold is a cube, and a circle you can hold is a sphere ('sa-fear' by Dale's pronunciation).
I gathered a few examples from around the house, and as Dale got the idea, I sent him to find his own.

After he went in search of a cube, I kept hearing a ka-clunk, ka-clunk, bump, thunk making it's way slowly down the hall back towards me.

Want to guess what Dale came back with for his cube?

A whole table! (The blue one pictured below)
Made sense to me, how 'bout you?

Thursday, December 4, 2008

Wednesday, December 3, 2008

Learning Christmas Songs

I decided a week or two ago that I am going to help Dale learn some Christmas carols this season.

I am sure this idea was partly influenced by our interest in the Charlotte Mason method of schooling; studying hymns was a regular part of Charlotte Mason's schools. It is suggested that a child learn several hymns throughout the year, including the story behind them when possible.

Christmas hymns seemed like as good a place as any to start.

This is our second week on Away in a Manger. I'm planning on teaching all 3 verses. Dale is solid on the first stanza and pretty much has the second under his belt also. If we can get to the third one this week and work on the melody some, he'll have Away in a Manger.

I figure that leaves us time for multiple verses of one more song or the first verse only of two more before Christmas. I'm thinking we'll start Silent Night next and go from there.

Of course, we're singing lots of the traditional Christmas hymns, but only working on memorizing one at a time.

One way we've done this is to type up the lyrics in a large font, print them, and cut them into phrases. Then Dale can arrange them in the correct order. Or we deal them out to each other and play the next phrase out of our hand. Or scramble them up for each other and let the other person put it back in order.
He loves these games! First we did each of the first 2 verses separately, and then today we mixed them together. It amazes me how much Dale loves playing with those. And it works!

Tuesday, December 2, 2008

You've got to be kidding me



I came across this news article the other day. It's about a group of parents and child psychiatrists (there's a clue right there) that are trying to persuade toy companies to stop advertising to children.

Because in these hard times their advertising is making kids want toys that parents can't afford and they don't want to (or won't) tell their kids 'no'.

Excuse me?

Are the toy companies going to feel sorry for parents and change their entire advertising scheme? Umm... no.

One toy industry consultant was quoted in the article saying that toy companies advertise to kids because it works.

Of course it does!

I have an idea: Turn off the tv. Or just tell your kids 'no'. *gasp!*

Yes, it's hard sometimes. But they'll be better for it.