
Friday, March 23, 2007
Grayson's Ears

Damon is Back in the Hospital
I just got an update that Damon has been back in the hospital. He was home for a day and then he spiked a fever and had to return to Pittsburgh. The docs have decided that they need to take a few steps back as far as Damon's TPN...his nutrition that he gets through his central line. For Short Gut kids, this is their main way of getting calories since the lack of small bowel makes it next to impossible to absorb nutrients. Damon's lipids had been taken out of his TPN and this was wonderful news. Lipids are the fats in TPN that wreak havoc on the liver. The docs have decided to add the lipids back in...it's really a catch-22....Damon needs the lipids but at the same time those lipids are damaging his liver. So, that's what I suggest we all pray about....the lipids....that they will not destroy his liver!~
Thursday, March 22, 2007
Neurostorming

Of course we are praising the Lord for Izzy's successful dental surgery!! I read the update her mom posted here...and I tell you, I am learning so much from this amazing mom! This post explains why Izzy had to have the dental surgery...and the post also contains her entry for Slow-Cooker Thursday! lol!! I just love that Annie, Izzy's mom, is so willing to share her family's journey. Thank You Annie!!
Fact sheet about Neurostorming
Tuesday, March 20, 2007
Izzy's Dental Procedure

UPDATE~~ Izzy is back at home and doing well. Praise the Lord!!
Damon Update

Damon returned home a few days ago!! His mom will be administering his IV antibiotics at home and he'll continue to get better and gain weight. Continue to pray for Damon to heal and pray for his mom too...I remember when we would have to give IV meds at home and it was not fun. It wasn't terribly hard...it just seemed to mess up Gus' meds schedule and his TPN schedule. It's a lot to juggle but I am certain Damon's mom can handle it well!!
Saturday, March 17, 2007
Thursday, March 15, 2007
Damon Update

See that sweet little boy there standing on the sled with his big brother and mommy?? That's Damon and he is a complete cutie patootie!! Right now, Damon is in the hospital with a nasty infection so we all need to be sending up some extra prayers. Pray that his line does not have to be replaced, that he doesn't lose any more weight, and that his family will feel God's peace in this hectic time. Pray especially for his big brother, Cole. Siblings have a tough time when things like this are going...it's scary for the parents so try to imagine how it feels to someone young.
Damon is on the waiting list for a liver/small bowel/ pancreas transplant at Children's Hospital of Pittsburgh. Pete and I met Damon and his family when we shared a room during transplant evaluation.
Hopefully, tomorrow, I'll have a good news update for you all!!
If you like, you can send a card to Damon (Hiett) through Children's Hospital of Pittsburgh.
Izzy's Button

Portagen and Grief
This afternoon I got a phone call from a man in Wisconsin named John. John has requested the four cans of Portagen. Great! And now here we go....that lovely grief monster has reared it's lovely head and I am at this moment bawling like a big ol' baby!! But, that's why "grief work" is hard...it sneaks up on you!! I'll be fine...I'll just lean into the pain and, more importantly, lean into God. He has always comforted me and I know He will continue to do so.
I am thankful that we were able to find a formula that Gus was able to absorb through his short little small bowel! I'm thankful that God provided this formula for us. I'm thankful that it didn't smell like Pregestimil!! And now, I'm thankful that John will be able to use these four canisters of formula....
Wednesday, March 14, 2007
Evan Early..book review

"For two days, Dad and Mom stay away. I'm scared and lonely. WillBut then, I love this one,
Evan Early be okay? What if Mom and Dad forget about me?"
"Finally, Mom stumbles in the door on the third day. Her hair isI KNOW you moms out there who have lived the NICU life can relate to that line! lol!! The book ends with Evan still in the NICU. The last two pages are devoted to questions and answers.
flat. She wears the same clothes she did the last time I saw her."
Friday, March 02, 2007
It's Party Time!

Welcome to Gus' Gang!! My name is Jenny (Jenny-up the hill) and this is a blog that I have started to journal about our family ministry, Gus' Gang. My husband and I started this ministry in memory of our son Gus who passed away May 31, 2006. Gus was waiting on a liver/small bowel transplant which would have taken place in Pittsburgh. His little body just was not able to hold out for organs and he peacefully went to Heaven. We miss him terribly but at the same time we rejoice because he now is living the life he so deserved!
It is our desire to come along side others who are caring for medically fragile children and of course, those families that are grieving the loss of a child. We do this by sending quilts to children, sending out grief packages(containing Heaven by Randy Alcorn and Treasures in Darkness by Sharon Betters, a blanket, journal book and chocolates), crocheting/knitting preemie hats for local NICUs and making "buddy dolls" and quilts for local children's hospitals. Of course, the most important thing we do is pray for these precious children and for the Lord to shower grieving parents with the peace that He has showered on us!
If you know of someone that you would like a "grief package" sent to, please e-mail me with their information. The "grief packages" are free. I will keep all information confidential. Of course, please let me know if there is a child we need to be praying for....I'd love to add them to the "gang"!!
Saturday, February 17, 2007
Meet Isabelle!
Isabelle is so healthy, she is so beautiful and she is so sweet. She is a little doll. I feel like an expectant mother, waiting for the birth of the baby. I am waiting and expectant that she is going to blossom and that she is going to do great.
There's so much I don't know about near-drownings and what therapies there are to help these people. I am looking forward to keeping up with everything going on with Isabelle and her family and I know that we all can learn from their experiences! So make sure you visit Isabelle's blog and don't forget to add her to your Prayer List.
Here are a few sites I came across that you might find helpful:
- Article at The Doctor Will See You Now I found this article to be helpful in explaining the basics. I'm sure that there are other sites that are more detailed.
- HUGS Foundation This is a support group for families with children who have nearly drowned.
- Article at Answers.com
Wednesday, February 14, 2007
Lauren Myers..Resting in Jesus' Arms
Valentines ...to Heaven
Valentines...... To Heaven
Monday, February 12, 2007
Prayers for Damon!
Thursday, February 08, 2007
Preemie Hat With Kanzashi Flower

I wish I could fix that little...skinny...petal there on the left!

Here's what I've made so far. Jake has made five I believe.
Blood Donations...

Pete donating blood.
This is Frankie "staging" the donation....I finished quickly this time!
Gus' photo of him getting a blood transfusion was used at the sign-up area. It made me smile!Tuesday, February 06, 2007
Friday, February 02, 2007
Prayers for Joel's Family
This is from the St. Jude's website...
Current Research:
- Basic scientists continue to investigate what factors cause neuroblastoma cells to form in the first place.
- A new anti-neuroblastoma antibody is currently under production at St. Jude to provide an additional tool to destroy residual microscopic disease.
- We are also investigating new ways to remove tumor cells contaminating the bone marrow by using drug combinations or laboratory methods to filter out the tumor cells.
- New treatments with drugs that inhibit cell receptors (on-off switches on tumor cells) or cause cells to undergo differentiation (maturation) are under evaluation in early clinical trials.
Tuesday, January 30, 2007
Monday, January 29, 2007
Manual Alphabet
courtesy of CeDIRUpdate on Aoife
"Aoife is at home! Mom and Dad brought her home last night. The doctors want her to continue gaining strength before heart surgery, but she's breathing fine on her own. Thank you for all the prayers."
- Gramma Rice
Please go check out her site...she is such a cutie. I absolutely love the picture of her with her Aunt Mindy. I hope I can meet Aoife one day!
Tuesday, January 23, 2007
Friday, January 19, 2007
Meet Aoife Evangeline

Aoife (ee-fuh) was born with Down Syndrome this past July. She weighed 6lbs 8ozs.
On January 8th of this year, she contracted RSV and on the 14th she stopped breathing and was rushed to the hospital. She was later airlifted to the regional Childrens Hospital where she is currently recovering from RSV and Double Pneumonia. During all of this, the doctors discovered that Aoife has congestive heart failure and needs surgery. Aoife needs to be bigger and stronger so the surgery can take place.
Aoife has three big sisters and one big brother. Please take a few moments to visit her site to read all about her and her family's needs. There are also banner codes you can add to your blog or site so that others can join in lifting this family up.
Let's storm Heaven with prayers for this sweet little girl and her family!
Thursday, January 18, 2007
In Memory... Happy Birthday Gus!
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!
Friday, January 12, 2007
Noah Steven "Crowned in Peace"
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!
Thursday, January 11, 2007

Samuel Finn Doriot
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
Tuesday, January 09, 2007
Happy 1st Birthday Grayson!!
Monday, January 08, 2007
Playing Catch-Up...

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!!
Sunday, January 07, 2007
Holland

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!
Saturday, January 06, 2007
I'm Special Too! Siblings of Special Needs Children
I found this article about siblings of special needs children and thought it might be helpful....
Tuesday, January 02, 2007
Remembering Emma

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!
Friday, December 29, 2006
Terran
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....

Saturday, December 23, 2006
Not Enough...
Transplants January-September 2006 22,016 as of 12/15/2006
Donors January-September 2006 11,194 as of 12/15/2006
--SIGH--
Tuesday, December 19, 2006
The Brave Little Soul

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.
Monday, November 27, 2006
Where's Asher??
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!!
Damon Hiett
Bye-Bye
That's what Grayson is saying! Isn't that the cutest little thing....I love when babies start saying words!

Wednesday, November 01, 2006
Thursday, October 19, 2006
Grayson: Before and After Surgery


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

Hip Hip Hooray for Grayson!!!
Tuesday, October 17, 2006
Eat, Monkey, Eat!!

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!!!
Saturday, October 14, 2006
Grayson is Struggling
So pray for the doctors as you continue to pray for Grayson and his parents.
Remembering Our Babies
Please light a candle on October 15th at 7pm (in all time zones) and let it burn for one hour in rememberance of our babies.
January 18, 2005 - May 31, 2006

Samuel Finn Doriot
January 9, 2004

August 26, 1996
January 2, 2006 - July 27, 2006
carepage..type in EmmaCody

May 9, 2006 - June 29, 2006

Grayson Update
Wednesday, October 11, 2006
Grayson's Going to Cinncinnati!
Tomorrow, Grayson will be heading to the Children's Hospital of Cinncinnati for the surgery to remove his hemangiomas. Please pray for travel mercies, that the surgery will go well and that he has a speedy recovery. Please also pray for Judi and Don, Grayson's mom and dad. His sister Olivia needs prayers too...it's hard when you have a sibling that is going through surgery. I'll update after the surgery...

Here's a picture of the hemangioma on his shoulder that will be removed.

Tuesday, September 26, 2006
I think Asher may have been extubated!!
Prayers for Stephanie
UPDATE:
Stephanie's surgery went very well and she is now recovering at home. She will have her bandages changed every two weeks. Thanks for all the prayers for this sweet little girl and her family!!

Stephanie has a rare condition called Arthrogryposis...it is a condition that affects her joints and muscles. This Friday, September 29th, Stephanie will be having surgery to shorten her left leg and to re-align her leg and foot. The natural growth has caused her leg to turn inward and her foot has rotated to the point that she is unable to place the bottom of her foot on the floor. Right now she has the nifty walker that you see above...and let me tell you this girl can fly! This walker has given her great mobility but hopefully the surgery will bring her much closer to walking without assistance. Please also pray for her family as she undergoes this surgery...anyone who has had a child go through surgery certainly knows how stressful it is...and if you haven't had a child go through surgery then just take my word for it!!
Thanks for your prayers and I'll update after surgery....
Thursday, September 14, 2006
Emma's mom and family....
Here's an article from the newspaper...
If you feel led to leave a note of encouragement for this family, please do ...I will make sure that they get it. Sometimes it's the little things, like an encouraging word, that make all the difference...






