fancynancy   asked a few questions…I thought I would answer them here!

“Do you really have a son named Yellow? And what exactly is wrong with Gus, how old is he and how is he doing?”

“Yellow” and Gus are the same person…I interchange the names frequently for some unknown reason! lol!!  I call him “Yellow” ( or “Yellow Dumpling Boy”)  because he is…well…yellow!  Gus had a birth defect called jejunal atresia and, after 7 surgeries, was left with an extremely small amount of small bowel.  Since he can’t absorb any food, he gets his nutrition intravenously through a central line…the “nutrition” he gets causes liver damage and in Gus’ case, cholestasis…hence the yellow color.  It takes around 2 years for a bowel to adapt and aborsb…sometimes this happens and sometimes not.  Everybody is different.  In Gus’ case, his liver is not going to hold out for that long so he is now listed in Pittsburgh for a liver/small bowel transplant.  He is currently the only baby his size listed there…he is toward the top of the national list but we are not sure where.  Basically, we could get a call at anytime…and yes, my heart beats out of my chest evertime the phone rings! lol!!  Gus is 13 months old and his condition is worsening but he is doing well.  He is playful and smiles a lot even though the progressing liver disease can cause him to be very tired at times.  You can read more about Gus and get updates at www.caringbridge.org/visit/gusdoriot

How many kids do you have?

I have 4 children…and yes, I interchange real names and nicknames with them too!  lol!!  I’m going to try to do better with that!!!  Sometimes they don’t even know who I’m writing about! lol!!

I just finished this book this evening.  It’s very good…there is an idea presented in this book (among many) that I can’t wait to get started on.  This book is certainly a keeper for our home library!!

Jake and I found a neat website today.  While looking for a site about the properties of light, we found Optics Workbench .  There are quite a few other games/activities but I haven’t checked those out yet.

I haven’t been blogging for a bit because we took a side trip to the hospital. Gus started bleeding so we had to go to Knoxville and hang out with our “other” family…East TN Children’s Hospital! lol!! Gus got to see Nurse Favorite while he was there…he also saw his nurse practitioner, Kathy. He didn’t like her though because she was wearing a white coat! Anyway, we’re home for now….

Today, Belle and I started talking about our Five Senses. I came across a printable book online but I couldn’t print it out….so we made our own. I can’t find the link where the printable book is so if anyone knows where this book is I would love to give credit where credit is due. Now, that said, I feel much better! lol!! Here’s our book:

Tomorrow we are going to make an “I Can See” book! Really fun!!

Our quote of the day was a really good one…may become my favorite!

“True happiness comes from the joy of deeds well done, the zest of creating things new.”
–Antoine de St. Exupery

I think I may print this up and hang in my quilt studio…lol…I wish I had my own studio!! My studio is actually our schoolroom…but it works for now!

I am so proud of Jake!  He finished his second Boxcar Children book.  Jake hates to read so this is a HUGE accomplishment.  I’m jsut excited that there are a gazillion of these books in the series!!  WoooHooo!!  I’ve been picking some up through

Paperback Swap.com .  I found this site that I’m going to use as my checklist… Boxcar Children Series

THURSDAY, FEBRUARY 09, 2006 06:12 PM, CST

Gus’clinic visit went well. Over all, the transplant team is pleased with how he is doing. Weight gain was the main topic of discussion and we’ve made a few changes in his TPN. We’re scheduled to come back up here in about 3 months….unless organs become available.

We just got back from checking out the Residence Inn…that is where we’ll be staying after Gus’ transplant. Tonya is the gal who is helping us…she is wonderfully nice. I know she’ll be a great help when we are finally up here. The suite is plenty spacious with a living room, kitchen area and separate bedroom. Things will be tight but I think we’ll be fine. There is an indoor pool and a workout room…and a grocery and maid service…I could be spoiled up here! lol!!

We are going to be flying out of Pittsburgh tomorrow at 8:30 so we are off to get some much needed rest.

I came across this site the other day… Remember the Milk  I’m a “list-maker” so I think this site is wonderful!  I also like 43 Things and  All Consuming  .  I have to be really careful at these last two sites….they are kind of addictive! lol!!

Today is Jake’s 10th birthday.  No school today…that’s one of our rules.  We took Jake to eat ribs at Smokey Bones .  We had a great time…I can’t believe he is ten!!

A little over a year ago, we almost lost our son Gus. He was very sick…his little body was being devoured by infection. We were in the East TN Children’s Hospital NICU the night we thought we would be saying goodbye to him. The chaplain was called in and Pete and I began our very long night of prayer, reading God’s Word and singing praise songs. It was the best way I knew how to “escort” my son from this world into the loving arms of God. One of the songs that we sang a lot was Praise the King by Cindy Morgan. There were several other songs but we kept coming back to this one. Here are the lyrics. I hope you know this song.

Praise the King
by Cindy Morgan

Praise Him in the morning
For tall and lofty trees
And praise Him in the evening
For children on their knees
Oh and praise Him in the noon day
For gentle birds that sing
Oh praise Him all ye people
Praise the King
And praise Him for a peaceful porch
A nd rocking chairs that sway
Praise Him for the rolling hills
Where children laugh and play
Oh and praise Him for the wandering soul
That never lost their way
Oh praise Him all ye people
Praise the King
Chorus:Praise the King
Praise the King
Let it ring
Praise the King
Praise the King
Praise the King
Let it ring
Praise the King

And praise Him for the blood that fell
And bloomed a rose that day
And praise Him that He suffered through the guilt, the grief, the shame
Oh and praise Him that His tender love will still forgive today
Oh praise Him all ye people praise the King(chorus)

Our prayers were answered and Gus made a turn for the better. We saw a miracle! Our friendship with the chaplain has grown…she is still such an encouragement to us. A dear friend, Bridget, sang Praise the King at Gus’ baptism this past November. We are so blessed!!