Gus' Gang - Homeschool Blogger

Moving....

Thu, 18 Jan 2007 21:40:00 -0600

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

In Memory...Happy Birthday Gus!

Thu, 18 Jan 2007 11:36:00 -0600

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!

Noah Steven "Crowned in Peace"

Fri, 12 Jan 2007 01:04:00 -0600

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!

In Memory...Samuel Finn

Thu, 11 Jan 2007 18:08:00 -0600

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

Happy 1st Birthday Grayson!!

Tue, 9 Jan 2007 08:10:00 -0600

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

Join Me As I Play "Catch-Up"

Mon, 8 Jan 2007 20:56:00 -0600

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!!

Holland

Sun, 7 Jan 2007 21:40:00 -0600

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!

I'm Special Too! Siblings of Special Needs Children

Sat, 6 Jan 2007 22:10:00 -0600

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....

Remembering Emma...

Tue, 2 Jan 2007 16:32:00 -0600

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!

Terran

Fri, 29 Dec 2006 00:38:00 -0600

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

Not Enough....

Sat, 23 Dec 2006 19:41:00 -0600

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--

The Brave Little Soul

Tue, 19 Dec 2006 22:28:00 -0600

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

I found this wonderful story over at Molly Grace's Caringbridge site.

The Strength of an Egg

Mon, 18 Dec 2006 22:02:00 -0600

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.

Bye-Bye

Mon, 27 Nov 2006 20:03:00 -0600

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

Damon Hiett

Mon, 27 Nov 2006 19:47:00 -0600

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!!

Where's Asher???

Mon, 27 Nov 2006 19:36:00 -0600

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!!

Prematurity Awareness Month

Wed, 1 Nov 2006 19:07:00 -0600

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

Grayson: Before and After Surgery

Thu, 19 Oct 2006 20:59:00 -0500

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

Hip Hip Hooray for Grayson!!!

Eat, Monkey, eat!!

Tue, 17 Oct 2006 21:46:00 -0500

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!!!

Grayson Update

Sat, 14 Oct 2006 20:08:00 -0500

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!!