Please come see our new look over at www.gusgang.blogspot.com

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Henry Larsen Doriot

"Gus"

January 18, 2005--May 31, 2006

Please consider organ donation.  There are a lot of children who die on the waiting list because parents do not donate their child's organs.  Organ donation is something you should decide before you are in the situation where you need to decide quickly.  It is not something that is easily talked about but let me reassure you that talking about it doesn't kill you or your child!

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Please join me in prayer for Adrienne and her family as they say goodbye to their sweet. precious Noah.  Noah's family will be taking him off life-support this afternoon...

This is from their letter on their blog..."We do not feel as though we are giving up, but rather we have been given the opportunity to give our son as a living sacrifice to God. To place Noah fully at God’s feet. No strings attached, no expectations, but a sweet gift in which we undoubtedly know God will delight." 

What a beautiful testimony of the Peace that goes beyond all understanding.  Please take time out to read the entries in Noah's blog and be sure to leave comments for the family.  Comments are truly encouraging!

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Samuel Finn Doriot  January 9, 2004

19 weeks gestational age--cord accident

Butterfly

A butterfly lights beside us like a sunbeam

And for a brief moment

it's glory and beauty belong to our world.

But then it flies on again

And though we wish it could have stayed

We feel so lucky to have seen it.

Author Unknown

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I wanted to post about Grayson's 1st birthday yesterday but I was unable to log in to HSB. 

Please join me in saying a big "Hip Hip Hooray" for Grayson's 1st Birthday!!  Grayson was born a year ago...as a micro-preemie.  He has come a long way and he is a true miracle!!  His mom, Judi, has put together a wonderful photo montage that you can see below!

Make photo slide shows at onetruemedia.com

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I am waaaay behind in my ASL (American Sign Language) class and I need to play some "catch-up".  I'm going to be hanging out withDr. Bill over at LifePrint and use his free online curriculum to do this!  LifePrint is probably my most favorite ASL site...it is very easy to follow and there are photos and animations.  Dr. Bill's site is set up in lessons and really goes into teaching about the Deaf culture.  There's also a section titled "Baby's First Signs". There are other online ASL dictionaries that I like too...ASLPro is one of them.  

I started learning ASL because Gus was bilaterally and profoundly deaf.  I am continuing to learn ASL in hopes that I will be able to communicate with other special needs kids...not only those who are deaf or hard-of-hearing but also those who are challenged in other ways.  It is a beautiful language that I encourage you to try out!!

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Red Tulip Field in Lisse, Amsterdam, North Holland, Netherlands   Izzet Keribar

I know that quite a few of you are already familiar with the story "Welcome to Holland" by Emily Perl Kingsley.  If you are not, please take the time to read it here.  It is one of my favorites!

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I was thinking this evening about all the sacrifices my three children had to make when Gus was with us.  Pete and I tried really hard to make them feel important and special too.  I think sometimes we did well and other times we failed miserably.  I just hope they realize that we tried!!

I found this article about siblings of special needs children and thought it might be helpful....

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Today,  we celebrate Emma's 1st birthday.  She is no longer with us but has gone Home and though she is missed, we know she is healed and happy!  Please join with me and remember Emma's family on this special day....

Also, please visit Emma's link in the sidebar for more pictures!

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Please visit Terran's Transplant site.  He passed away this past fall and his mom sure could use some kind words and lots of prayers.  She diligently took care of Terran for ten years and now she's feeling kind of lost.  I can understand, though not to the same degree...I still feel like I should be preparing TPN or mixing up some special formula....it's just hard folks.... 

St. Petersburg Times

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Waiting List Candidates                                                    94,808 as of today 8:40 pm

Transplants January-September 2006                           22,016  as of 12/15/2006

Donors January-September 2006                                   11,194  as of 12/15/2006

--SIGH--

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The Brave Little Soul
By: John Alessi

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I found this story over at Lisa's CB site. 

The Strength of an Egg

by Juliet Freitag

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!

If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.

Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.

It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.

Unlike Humpty Dumpty, though, parents of [medically fragile] kids will pick themselves up and put themselves back together again.

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That's what Grayson is saying!  Isn't that the cutest little thing....I love when babies start saying words! 

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We shared a room with the Hiett family while we were in Pittsburgh for Gus' transplant evaluation.  They are such a nice family...we all left there with the knowledge that our little guys were going to be placed on the national transplant list.  When Gus died, for some reason I just assumed that Damon had probably died too.  I guess I thought that because the majority of people die awaiting transplant...but...I got a call from his mom the other night and he is doing great!  This was such good news!  Damon has had a procedure called STEP (this link will take you to a live surgery..if you so choose!)  to lengthen his small bowel.  His liver is doing great!  So if he continues to do well with the STEP and his liver numbers remain good then he may not need transplants!  That would be fantastic!!  So, let's all pray for this to happen for this little guy and his wonderful family.  Hopefully I will have a picture of him soon!!

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Well...he's home of course!!

This is a photo of Asher getting ready to leave the NICU! 

How exciting for his family!  When Asher was born, he weighed 1 lb and 7 oz...the day he left the NICU he weighed a 9 lbs 14oz.  That is a miracle!  Asher still has to have special care but I am sure his mommy and daddy are perfect for the job!  Let's all continue to pray for Asher and his family and let's remember to praise God that Asher is able to live at home with his family!!

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Visit Gus' Band and create your own so we can help save babies from premature birth!!

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Grayson also had another hemangioma removed from his back...

Hip Hip Hooray for Grayson!!!

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Asher is moving right along...except for the eating thing!  He has an occupational therapist working with him now...it's common for little monkies to need help in the eating department...suck, swallow, breathe, suck, swallow, breathe!!  Go Chunky Monkey go!!  Asher has also been tugging at his tubing and cannula so we need to be praying that everything "stays put"!!  He's a wild one!!!

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Grayson is doing much better now!  It looks like he may have a viral infection and as bad as that is...it could have been much worse.  I am so thankful that everything is A-ok with his bowel...in all honesty, I was quite concerned about that!  So, change those prayers to praises!! 

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