Gus' Gang

Music Within

2009-08-17T21:06:00.003-05:00

I watched a really good movie the other night called "Music Within". I just kind of stumbled on it while looking for something....anything....to watch on tv. It was kind of a scary time for me because if I couldn't find anything it meant I would have to clean the kitchen! Anyway...I did find a good one...it's rated R so there's your warning.

Here's a photo I found of the real Richard Pimentel and Art Honeyman. I hope you all will get a chance to watch this movie!

Meet Aidan!

2009-03-03T19:09:00.004-05:00

I just found out about this little guy today. His name is Aidan and he's a complete cutie! Aidan has been diagnosed with Eagle-Barrett Syndrome (also known as Prune Belly Syndrome) and End Stage Renal Disease and, needless to say, he really needs our prayers. Recently, he has suffered a stroke which has left him without activity in the top portion of his brain. This has been heartbreaking news to his family. I encourage you to visit Aidan's Fight and let his family know you are praying for them...words of encouragement are so powerful!!

What I Want to Be When I Grow Up

2009-01-27T19:29:00.002-05:00

I've been away for awhile because I've been getting ready for nursing school (BSN at ETSU). Applications and other necessary paperwork has been turned in and all I have to do now is wait...for something like two months! Ack!! While I've been away, I have remembered all of our little Gus' Gang kiddos and families. I haven't kept up with all the blogs and updates though so I will be taking some time to catch up. I can't wait to hear about all the exciting things everyone is doing!!!

Also, I am looking for organizations and sites that offer encouragement to families who are suffering the loss of a child through miscarriage. I want to update my sidebar and there are a bazillion of these sites out there. I was hoping that one of my readers had a suggestion...

As always, if you have specific prayer requests let me know...if you know of child you would like for me to add to Gus' Gang then let me know! It's an honor to pray for and offer encouragement to these kids and their families!!

Urgent Prayers for Chloe and Family

2008-09-16T08:13:00.003-05:00

UPDATE: Chloe died Tuesday night at 10:51. Please continue to join with me in prayer for her mom, dad and little sister...

I just read this over at Chloe's carepage:

Chloe’s internal functions are slowing down and starting to not work as efficiently as they should be, and we have been given a possible time-frame of 2-3 days or maybe a week at the most. I really, in my heart, don’t think we have a week. We have all of our family coming tomorrow to visit.

Let's all remember to be prayer warriors for this family during this time. This news breaks my heart...not for Chloe because I know she will be fine...but for Mom and Dad. It's tough, folks. It's tough to have to let your child go...on one hand you want them to no longer suffer, but on the other hand you know you will miss them so profusely. At the same time, as parents, you hold out hope that God will miraculously heal your child...and He can if it is His will. There are tons of emotions, but in the midst there can also be God's peace and that's what I pray for them.....

Chloe's Journey

2008-09-02T03:43:00.004-05:00

Nessa asked me to add Chloe to our blog and prayer list...it my honor and privilege to do so! Chloe is a 7 year old little gal who was diagnosed with Stage IV Neuroblastoma awhile back. She received several different treatments, including a bone marrow transplant. Scans have been done on a regular basis and all have come back clear...until recently. Unfortunately, the last scan result was not what was expected and her parents received that much dreaded news...the cancer is back and has spread to her liver and back into her bone marrow. My heart just breaks for her and her family...I don't understand these things...can't even wrap my mind around it. God is the only thing that brings any kind of comfort during times like this. A friend had updated the Carepage with this:

I am so grateful to KNOW without a shadow of a doubt that GOD IS ON THE THRONE and nothing surprises Him. He has prepared Michele, Nathan, Chloe and Trinity for a time such as this. We, those who love and support them, can offer the greatest gift by lifting them up to The Father.

And that is what I am asking all of you Gus' Gang readers to do...pray for Chloe and her family.

I just love the photo above! Those bright eyes are just captivating...makes me think about what little warriors these kids are to endure all the hardships they face. Seriously, they seem to always be smiling...I think there is a lesson in that for all of us.....

You can visit Chloe's Carepage for regular updates and to leave encouraging comments for her and her family.

Sad Update

2008-08-24T12:03:00.002-05:00

It was my plan to post an update about Isaac Bowers...he is the little fellow I wrote about here. He and his family were awaiting heart surgery at Vanderbilt when he caught some type of infection. Pete received a call just a bit ago letting us know that Isaac had died. As many of you who have had sick children know, being in the hospital is both good and bad: good because our children are given medicines and therapies that give them a chance, but then on the other hand it's a place where germs thrive.

My heart just breaks for Isaac's family because I know how they feel and I know what lies ahead. As we have been praying for little Isaac's healing (which, by the way, our prayers have been answered!), let's now shift gears and pray specifically for the healing of his parents and the rest of his family. Pete and I will be dropping off a GUS Box when we go to the service. If you want to leave a message of condolence or of encouragement, please do so here and I'll make sure it gets to Isaac's family.

Prayers Needed for Kari

2008-08-21T07:07:00.002-05:00

Ok, Prayer Warriors...I've got a little gal that needs your prayers! Her name is Kari...she is just a few days old and she has an incomplete aorta, an aortic valve that is too small and she has a hole between the bottom 2 chambers of her heart. Needless to say, this little chick has some serious medical issues and she and her family need our ongoing prayers.

Kari was airlifted to CHOP (Children's Hospital of Philadelphia) last night. The docs there at CHOP are very familiar with the type of surgery she will need and are better equipped to handle it all. Friends of the family made sure that Kari's mom made it to Philadephia in a timely manner...they provided her a charter flight! Seriously, I think that is soooo nice....I was so pleased to hear that mom was able to get to her quickly.

Kari also has two sibling, I believe, so say some extra prayers for them also.

If you have a desire to send an e-card to Kari through CHOP, please e-mail me and I'll pass along the info.

Minkee-liscious Quilts

2008-08-05T10:12:00.014-05:00

I just wanted to share with you all these wonderful quilts that have been donated to Gus' Gang! They were made by my friend, Joy Smelser, and they are WONDERFUL....anyone who knows what Minkee is knows that I am not fibbing here! lol!! Joy has backed these quilts with Minkee and has even added a few squares to the front of some of the quilts....Minkee is soooo soft and I think the kids at the hospital will love to feel these quilts and will certainly want to snuggle up with them! Folks, these photos don't do these quilts justice...my design wall is falling down and I just am not a photographer...

Joy also made some little bitty quilts that I've been calling "Stim Quilts" which is short for stimulation quilts. These little quilts have lots of different textures on them which makes them great for the little NICU babies who are a little older and need the stimulation...there's the soft minkee, a waffle texture and satin. Just perfect!!

I am so thankful for Joy and I can't wait to share her wonderful quilts with the Child Life department at our soon-to-be open children's hospital in Johnson City. Pete and I are going tomorrow to the ER Open House and I'll be taking these with us.

Prayers for Baby Bowers

2008-07-30T09:59:00.002-05:00

Pete and I have recently taken over one of the local blood drives. While Pete was calling one of our regular donors, he found out about Baby Bowers.

Baby Bowers was born last night to Sam Bowers and wife (Sam is the donor we were trying to reach). He had to be airlifted to Vanderbilt because he needed emergency surgery to repair his heart. We don't have the details, but we do know how scary this all is to the family. Pete talked to the Grandmother who gave as many details as she could....as we get the info (I'd like his name!), I'll pass it along. Until then, just pray.

Needing More Help!

2008-07-29T05:14:00.003-05:00

Our son, Gus, who passed away at 16 months, was profoundly and bilaterally deaf. Most insurance companies DO NOT pay for hearing aids...ours was one of those that did not. We were fortunate enough to get help from a local group that flat out paid for Gus' hearing aids which were $10,000 a pair. A lot of people are not in the same situation that we were and they are having to pay for their child's hearing aids out of pocket. If that had been our case, Gus would not have had the hearing aids. I think it is very important for any child who has been diagnosed as hard-of-hearing or deaf, to have the equipment he/she needs.

The organization I blogged for this past Saturday is one that advocates for these kids....they too feel that deaf children should have the equipment they need. Seriously, it makes me sad that we even have to have an organization to do this....it should be an automatic thing that we do...take care of our children. I'm simple though...I guess it's much deeper than that....

Anyway, I know that money is really tight for all of us right now and that's why I am thrilled that Nessa has set up a way for you all to donate to Blogathon 2008 without spending a dime!! Please head over to her blog and read all the details...it takes less than a minute, won't cost you a single cent, and she's giving away prizes!! Woohoo!!

Of course, if you want to donate more you certainly can. All you need to do is click here and then send me an email at pdoriot(at)chartertn(dot) net or leave a comment and tell me the amount you've donated. I will post your name...unless you wish to remain anonymous. I only ask you to send me the amount so I can keep track goal-wise!

CURRENT DONATIONS: $155 only $345 more to go!!

Thanks:

Kidd Dynamite

Nessa and Gang in memory of Serena who recently passed away.

Crazy Tanya

Anonymous

Blogathon 2008

2008-07-24T10:07:00.001-05:00

For more information and instructions on donating, please click HERE!

AN EASY WAY TO MAKE A DONATION THAT IS ABSOLUTELY FREE TO YOU!!

Nessa, from Absolutely Moms and According to Me, has graciously offered all of her monies earned from her Lilaguide registrations!! Lilaguide is a new site with lots of different communities. Nessa has started a group for WAH or SAH moms where we can exchange tips and ideas, read product reviews and even find great blogs to read! This community is new and is growing daily...I know you don't want to miss out on this!! Even if you are not a WAH or SAH mom yet, you are still welcome...heck, even if you're not a mom yet, come on in! lol!!

Sign-up is easy-peasy. All you have to do is sign up here and when you do so, Nessa will make as bit of money which she will be sending to me as a donation for Blogathon 2008. So see, you can donate even if you have absolutely no money whatsoever...how cool is that!?

Seriously, this is so easy....just a smidge of time and you've joined a cool group AND you've helped make a difference in the life of a deaf child! So do it...ok?

banner: Shabby Fall Page set by Shabby Princess

Prayers for Maddie

2008-07-11T09:06:00.005-05:00

UPDATE: Maddie died late last night. Please continue to pray for this family....

I usually don't post information or photos without permission, but I felt led to do so this time. I think it is because Pete and I have been where this family is right at this moment and we know how the power of prayer can envelope us in peace. That is exactly what I want all of us to pray...that the family of Maddie Harrill will feel that peace of God that goes far beyond our own understanding.

Maddie has cancer and has been given a poor prognosis. I believe she is currently at East Tennessee Children's Hospital which is where we spent so much time. I know that the whole family is being cared for well by the nurses and doctors there...we were so I imagine they are too.

Her parents are hurting, yet they remain full of faith. Folks, watching your child die is so very hard so please, please, please make time to pray for this family today. I rejoice that Maddie will soon be seeing the glories of Heaven, but my heart is breaking for her mom and dad. Of course, there is always hope that Maddie will be healed her on earth, but sometimes the miracle of healing takes place not on this side of Heaven. Regardless, God has Maddie in his hands...

You can read more about Maddie...and see some great photos....over at her Carepage. Type in MaddieHarrill as one word. www.carepages.com

Johnny Jackson

2008-06-06T10:51:00.004-05:00

I just read about a little guy named Johnny Jackson who has died due to secondary drowning. My heart is heavy for this mom right now and I think we should all remember her and the rest of the family in our prayers. It breaks my heart that such tragedy has followed what started out to be a fun time...very sad.

Letter to Gus

2008-05-30T08:41:00.003-05:00

I am posting this letter one day early because I will not be on the computer tomorrow...it is Celebrate Gus Day! Gus died on May 31, 2006 and we will be celebrating his life this evening and all day tomorrow...

I have found it very therapeutic to write letters to Gus. The following is the letter I’ve written to mark the second anniversary of this death…or rather, his “homegoing”. I want to make it very clear that by writing this letter I am in no way trying to make contact with him. Contacting the dead is wrong and quite dangerous. (Deut. 8:9-12). There are deceitful spirits out there that yearn to make us think we are talking to our loved ones when in all actuality we are not. Besides…God has provided us with the only Spirit we need…the Holy Spirit. He will not deceive us nor misguide us. Since I’m certain that the Lord and Gus see each other daily, I have asked Him to share these letters if it is His will….I like to think it is!

Dearest Gus,

It has been two years since we said goodbye to each other. When I think about the time that has passed, I am amazed that it has been that long—yet, then again, sometimes it feels like it was just yesterday. I am still able to feel the weight of your little body in my arms. I can even still imagine nuzzling your neck and breathing in your precious baby smell. I know in time that will pass. God comforts me with these memories and I am thankful.

I still dream of you often. My hope is that I will continue to do so until we are reunited. My dreams of you are often funny. I can honestly say that I wake up from them feeling joy instead of the great dread that I could feel in knowing you are no longer here. God uses these dreams to bring me comfort and I am thankful.

Your dad is about to graduate nursing school and I’ve just started working on my three pre-requisites so I can start nursing school next summer. My time with you has shown me that I can handle the toughest things on this earth. Certainly I have not done any of these things—like holding you as your heart beat for the last time—on my own but only through the magnificent power of our Lord and Saviour, Jesus Christ. Because of this, I am praying that God will bless us with in-home opportunities to care for other medically fragile children—especially the ones that are abandoned in the hospital and have no one. This sounds crazy to a lot of people and I do understand. Who in their right mind would want to get attached to a child that may die?? Who would set themselves up for such heartache?? Well, your dad and I would…and we would be honored to have the opportunity to do so. I have been blessed and equipped with the experience of your death and as I start school, I look forward to the chances I will have to “give back”. God has empowered me to face the tough things and has given me empathy and I am thankful.

As I am aware of the fact that a righteous man’s prayer is powerful and effective(James 5:16), and you my son are as righteous as you can be since you are now with the Lord, I am hoping you will pray for me…well, for all of us Doriots! Seriously, this world is so beautiful yet so dark—so full of sin. I strive daily to live joyfully and I look forward with great anticipation to our reunion. It is hard here though so please pray that we will not grow weary and lose sight of Home. God uses the reality of Heaven and seeing you again to comfort me…and I am thankful!

I love you, Gus!

Mommy

Make an on-line slide show at www.OneTrueMedia.com

Katerpillar Kids

2008-05-27T21:20:00.003-05:00

The summer after Gus died, Nik and Jake attended Katerpillar Kids. This camp is held yearly for children in grades 1-12 who have lost a loved one.

Our good friend, Chaplain Sandy, sent us information about the camp and I'm so glad she did! Pete and I thought it would be good for the boys to meet others who were experiencing loss like they were. Some of the kids had also lost siblings, but some had lost parents. At the end of camp, there was a butterfly release. I missed it because I had gone on a scrapbooking retreat...in all honesty, I'm not sure I could have handled seeing the butterflies fly away. I could now, but not back then.

Katerpillar Kids will be held this September in Townsend, TN. The camp is free and fills up quickly so you need to get your application in soon!

Maria Sue

2008-05-22T18:51:00.001-05:00

Please join me in praying for the family of little Maria Sue Chapman.

The Special Mother

2008-05-11T18:20:00.003-05:00

I wanted to share this famous poem by Erma Bombeck. I can't help but think about all you moms out there who are daily living (and thriving!) with your wonderful special needs kids. Though Gus was only with us a short time, I was certainly plunged into that world and I know both the hardships and joys you all experience on a daily basis. My wish is for each of you to have the most wonderful Mother's Day ever!!

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard.
He's used to profanity."
Finally he passes a name to an angel and smiles.
"Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience,
or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today. She has that sense of self and independence
so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that.
This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occassionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

Elvin the Elephant Who Forgets

2008-05-07T20:23:00.005-05:00

I came across this book and I thought that some of you might like to know about it. It's about an elephant who suffers a brain injury after a tree branch falls on his head. He visits a therapist and finds out that he's not bad at all and that he just has an injury.

This sounds like a wonderful book and the illustrations are great...and not only because I love elephants! You can see for yourself by checking out some page excerpts. Very neat!

If anyone has read this, I'd love to know!!

Elvin the Elephant Who Forgets
by Heather Snyder & Susan Beebe, Illustrator 2005

Dragonfly Heart Camp

2008-05-06T21:19:00.003-05:00

Dragonfly Heart camp is a camp where children with heart disease and pulmonary hypertension can go and experience a lot of fun and adventure! Kids will be able to use a zip line, take field trips, nature walks, and much more. Of course, there are doctors, nurses and respiratory specialists who are part of the staff so campers are well care for.

Dragonfly Heart Camp is located near Chesapeake Bay in Maryland. The camp is almost free...there is a $50 registration fee that is non-refundable. For more info, you can visit their website here. Sounds like a lot of fun!!

Two New Friends

2008-04-24T19:01:00.002-05:00

We've got two new Gus' Gang friends to welcome!

First is a little fellow named Caleb. Right now he is hanging out at St. Judes in Memphis, TN because he is undergoing treatment for a rare cancer called ATRT. I hope to soon get permission from his family to post a photo and his carepage address. Caleb's parents live in Greeneville and take turns staying with Caleb in Memphis. Road trips are common in situations like this so we all need to be praying not only for Caleb's healing, but also for travel safety for this family.

Next, I'd like to tell you all about a gal named Cassidy. She is a nine year old girl who my parents have recently met...her uncle owns a restaurant that my parents eat at and she sometimes helps her uncle serve the food. Both of my parents have mentioned that she is just a jewel! Well, last week, she was diagnosed with Stage 4 cancer. We are still trying to find out what type of cancer and I'll let you all know when I do. She has already had her first treatment and became very, very sick. I hope that each of you will pray for this gal and her family. I hope to find out when her next treatment is so that we can just bathe her in prayer at that specific time. As with Caleb, I hope to get a photo soon.

So there you go....please don't delay in adding Caleb and Cassidy to your Prayer Lists!

Top Droppers

2008-04-17T22:24:00.003-05:00

Thanks to all these fine Entrecard folks who have been consistently coming by for a visit! These are the top seven droppers.

Easy Share ---Connie's going to be seeing Gregory H. Johnson (Major, USAF) soon!
LloydLopez.com ---tons of techy stuff here, folks!
Cheaper by the Half Dozen ---read a neat story about her son
The Sewing Mom ---read about a IRL meet-up!
Old Bitty ---see a hilarious IRS sign!
Nessa's Place ---read about Nannito Bandito
Struggling Parents ---find out about natural remedies for ADHD

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Trails Edge Camp

2008-04-16T00:13:00.003-05:00

As summer is quickly approaching, I thought I would share some camps I've come across lately.

This week's featured camp is Trails Edge Camp. This camp is for children ages 5-18 who are ventilator-dependent. It's a great opportunity for these kids to meet other kids like themselves and also a time where parents can take a break and know that their child is in good hands.

Of course, like any other camp, there are tons of activities planned like horse back riding and fishing along with all the other typical camp activities! I think it's great that camps like this give children the opportunity to be children...to be able to do things that other kids at camp are doing. They just have to do them a little differently! One thing I think is incredibly neat about this camp is that there is a tree house that the kids can go up into. They get hoisted up in a sling and harness!! Very clever!!

If you have a child who is ventilator-dependent you should check into this camp. It's located in Mayville, MI and is absolutely FREE to children and parents. See what generous donations can do!!

Let me know if you go!!

Great Resource for Tube-Fed People

2008-04-09T23:42:00.003-05:00

One of the resources I found early after being told that Gus would need to be tube-fed for awhile was the Oley Foundation. I did a search for tube-fed children and support groups and this foundation is what came up on the results page. I'm thankful that I discovered this resource because there is tons of info and tips. I encourage you to check it out if you have tube fed child!

I noticed too that there is a section on Omegaven now. This is the new drug that has had incredible results in repairing the liver. This is huge for those people who are on long-term TPN because the lipids in the TPN basically kill the liver. I found out about it a month after Gus died. It's not an easy medication to get, but there is info at the Oley Foundation site that tells you how to actually go about it. At the time I found out about the med, it was only being administered in one hospital...now there are at least 25 hospitals who are giving it. I can't even begin to tell you how happy this makes me. TPN induced liver disease kills infants...the adults seem to do better but not by much...so to know that this med is becoming more available to small ones with short bowel syndrome really makes me happy.

I still get the newsletter because I want to stay on top of the information. Hopefully, we'll be adopting medically fragile children in the near future and I'm sure most of them will have a g-tube, ng-tube or central line. I'll be a better caregiver if I stay informed!

Top Seven Entrecard Droppers

2008-03-21T21:17:00.001-05:00

Thank you, thank you, thank you!

Etsy for Autism

2008-03-09T19:02:00.004-05:00

Some of you all remember me writing about Betty Refour and her sister Rose who is an autistic adult. Well, I recently heard from Betty that there is a new blog(Etsy for Autism) that is being written by a team of artists who support and encourage Autism Awareness. I love to buy handmade items and I think it's wonderful to know that there are people out there who are using their talents to draw attention to things like autism, organ donation, etc. So head on over there to see some really beautiful art...and be inspired by these kind souls!

This is a piece created by Rose. Betty says that Rose has always been artistic and that she loves to go shopping immediately after she sells one of her masterpieces! Click on the artwork to go to the Etsy shop...

Book Report: Room of Marvels

2008-02-25T08:25:00.004-05:00

There are a lot of books out there to read. Some books are entertaining…some are boring…some are down-right awful…and then you come across a book that is just…well…beautiful! That’s exactly what I discovered when a church friend loaned me her copy of the Room of Marvels by James Bryan Smith.

This is a story about the author’s loss of joy after the death of his best friend, his two year old daughter and then his mother. Well, let me rephrase that: it is a story about the hope of Heaven and regaining joy! This is such a moving book, and I could so closely relate to the author, that I read it in one sitting. Yes, everything else was pushed aside so I could read this book and take from it the message God wanted me to hear.

You join the author on a journey through Heaven. As the journey progresses, the author meets acquaintances and loved ones from his past and yes, he does see his best friend, mother and his daughter. And yes, you will cry! Of course, the book is fiction because none of us know such details about Heaven, however, I do believe that God does reveal things like this to us and I do feel that God did just that with Mr. Smith!

If you have experienced the searing pain of losing a loved one, especially a child, then you certainly need to read this book! I was moved, inspired and filled with hope and joy for what is to come. I am thankful that Mr. Smith has shared his dream with us and I’m tickled to think that my children know his child in Heaven…I just know they do!!

Weekend Linky Love

2008-02-23T14:05:00.003-05:00

I was thrilled and honored to find our Gus' Gang button in the sidebar of a blog I came across today! It really touched my heart... Please be sure to visit Cheaper by the Half Dozen. You'll be sure to find a neat blog chocked full of good stories and lots of lovely goodness. And of course, Jo from Life with Heathens, has had our button in her sidebar for awhile now...thank you, friend!

Entrecard Top Droppers:

Parenting Squad
Sense to Save
Mommies Home
Momma Muse

A big "Thank You" to these fine folks who ran our Gus' Gang button on their blogs:

Comfort Joy Designs
Grammology
Parenting Diva
Mo Mhile Gra

Template Giveaway!

2008-02-07T23:19:00.000-05:00

Just wanted to let you all know about a cool giveway happening over at Doodlebug Designs! To celebrate the Grand Opening of her business, Judi (Grayson's mom!) has decided to give away a template...well, actually she's giving away several prizes! Here's the list:

1st Place Prize ~ FREE completely customized blog design for a blogger blog!
2nd Place Prize ~ FREE completely customized header for a blogger blog!
3rd Place Prize ~ 10% off any service!

Judi does great work...she designed my Up the Hill Gang blog and I absolutely love it! Make sure you head on over there to get all the details! Neato Mosquito!

Bob's House

2008-02-04T21:12:00.000-05:00

Hat tip to Karen from A Deaf Mom Shares Her World for sharing the link to the interview with Darren, the passenger in the commercial! Neat!

The Dales Walk

2008-02-03T20:38:00.001-05:00

As I was visiting Corey today, I read about the Dales Walk being pursued to raise funds for the Joseph Salmon Trust. This trust has been established in memory of 3 year old Joseph Salmon who died in his sleep. The money in this trust goes to help with the expenses when a child dies. I think this is a wonderful cause. Funeral expenses are so high and sometimes it is years before money can be saved in order to purchase a headstone for the grave. One of the best ways to help families who have lost children is to help with these kinds of expenses. We had someone donate money when Gus died and we were able to purchase his marker quickly....there are some graves around his that still have the little metal pokes used to id the graves that do not have markers yet. It would make me very sad if we had not been able to mark Gus' grave....

So...if you feel led, please consider helping this group raise some money to help these grieving families. Every donation makes a difference.

Happy Birthday, Gus!

2008-01-17T23:44:00.001-05:00

Henry Larsen Doriot

“Gus”

January 18, 2005 - May 31, 2006

I am happy!

I am happy that I got to meet Gus. I’m happy that I got to see his precious smile and his flirtatious ways. I’m happy that I was able to capture very expressive moments with my camera so I can continue to share Gus with others. I’m happy that we got to bring him home where he could interact with his siblings in a normal atmosphere. I’m happy that he would wiggle to get out of the arms of whoever was holding him when he saw me come in the room. I’m happy when I remember his fascination with a new plaything. I’m happy when I think about the special kind of communication we had since he was deaf. I’m happy when I think about how much he loved to get his central line dressing changed because of the smell of the chloraprep. I’m happy because he was such a complete joy to take care of and I’m so happy that he is mine!

My New Addiction

2008-01-17T22:01:00.001-05:00

I have decided to put together an album of our Gus' Gang kids so I can show our "locals"...mainly because I can't get any of them to visit the blog! lol! This is Leah Rose...isn't this an absolutely adorable photo of her?? I love it!

Anyway...be looking for more layouts...I'm kinda addicted! I've got Rhett's done and am looking for the perfect "paper" for Noah...

Design credit: Becky Smith's French Kiss QP (quickpage)

Healed in Heaven

2008-01-16T17:13:00.000-05:00

Tadhg Michael Kilgore
October 12, 2007 – January 9, 2008

I first read about Tadhg over at Noah's blog. I was so moved by something that Tadhg's Uncle Chris wrote that I wanted to share it with you all. Having experienced the death of a child myself, these words really touched my heart. As I approach Gus' birthday, I want to remember these words...

One would not say that a short story is incomplete because it isn't a novel. It takes all kinds and some stories by their brevity make their point all the finer.
----Tadhg's Uncle Chris Kilgore

Please join with me in prayer for this family and please visit Tadhg's blog and read his courageous story. Also be sure to read The Poet...it's beautiful and I'm thankful that the family has shared it....

Happy Birthday, Sam!

2008-01-08T23:38:00.000-05:00

Samuel Finn Doriot

January 9, 2004

born sleeping at 19 weeks

A Dream

A dream is a wish your heart makes,
When you are fast a sleep.
In dreams you will lose your heartaches,
Whatever you wish for, you keep!
Have faith in your dreams and someday
Your rainbow will come smiling through!
No matter how your heart is breaking
If you keep on believing
The dreams that you wish for,
will come true!

from Walt Disney’s Cinderella

One Small Sparrow

2008-01-04T15:35:00.000-05:00

I've just finished a book that I thought some of you would enjoy reading. It's called One Small Sparrow by Jeff Leeland and you can read my quick review over at my main blog, Up the Hill Gang. I have a hardback copy that I found in the free bin at our local book exchange place and I would love to pass it along to one of you! It's first come first serve...just make sure you leave me your e-mail or blog address so I can get in touch with you to get your mailing address!

Wordless Wednesday...Singing Gus

2007-12-12T17:00:00.000-05:00

Leah Rose

2007-12-11T20:29:00.000-05:00

Meet Leah Rose! She is a spunky 4 year old we are going to be praying for here at Gus' Gang. A geneticist at Shands Hospital in Florida has diagnosed her with Freeman Sheldon Syndrome. Her mom has put together a ton of information for us at her blog so instead of explaining the syndrome here, I'm going to send you over there!

I look forward to getting to know Leah Rose and her mom and I also look forward to praying for them. Please join me!

The Dying Child by Hans Christian Andersen

2007-12-11T20:18:00.000-05:00

We've been reading a good little story by Hans Christian Andersen called What the Moon Saw. As I was doing some research about this author, I came across this poem that really touched me....and yes, made me cry. It's the last stanza...the image of an angel kissing my sweet Gus just brings tears to me...good tears though. He is sorely missed....

The Dying Child

By Hans Christian Andersen.

Mother, I'm tired, and I would fain be sleeping;
Let me repose upon thy bosom sick;
But promise me that thou wilt leave off weeping,
Because thy tears fall hot upon my cheek.

Here it is cold: the tempest raveth madly;
But in my dreams all is so wondrous bright;
I see the angel-children smiling gladly,
When from my weary eyes I shut out light.

Mother, one stands beside me now! and, listen!
Dost thou not hear the music's sweet accord?
See how his white wings beautifully glisten?
Surely those wings were given him by the Lord!

Green, gold, and red, are floating all around me;
They are the flowers the angel scattereth.
Should I have also wings while life has bound me?
Or, mother, are they given alone in death?

Why dost thou clasp me as if I were going?
Why dost thou press thy cheek so unto mine?
Thy cheek is hot, and yet thy tears are flowing!
I will, dear mother, will be always thine!

Do not sigh thus – it marreth my reposing;
But if thou weep, then I must weep with thee!
Ah, I am tired – my weary eyes are closing –
Look, mother, look! the angel kisseth me!

Words of Encouragement

2007-11-18T15:45:00.000-05:00

As I was out and about visiting other blogs today, I came across a post over at The Not Quite Crunchy Parent blog which reminded me of all the words of encouragement we received and still do receive on Gus' Caringbridge site. MC Milker has written a post called "Caring Through CarePages" about how she has been lurking around one that has been set up for a child who has leukemia. This little guy goes to preschool with her child.

I can't even begin to tell you all how encouraging it was to us to find out that we had received comments. Some were short and to the point and others were long...all were refreshing and gave us so much love. Just that fact that someone had checked in on us was encouraging.

So, if you are ever at a CarePage or Caringbridge page, please be sure to leave a comment. It doesn't matter if you actually know the person or not. In fact, that is exactly how I met Judi, Grayson's mom...she had commented on Gus' page after he had died and we started corresponding. So, see...you don't have to really know the family to spread God's love and encourage one another.

I challenge you this week to find a Caringbridge or CarePage site and just leave a comment. Some pages are private, but there are plenty of ones out there that are not. Of course, you can always visit some of the kids we have listed in the sidebar.

You really can make a difference....

With Much Sadness

2007-11-07T11:14:00.000-05:00

I just got an update from Jon's caringbridge site with the information that he has died. Folks, we need to really just bathe this family in prayers right now because I can't think of a harder thing to go through than the loss of your child. I also know that the presence of the Lord during a time like this can be very evident and can give great peace. Though saying goodbye to Gus was the hardest thing I have ever had to do, I did feel that peace that goes beyond understanding and that is exactly what I want for this family...for Jon's mom, dad, well, his whole family because I know that they are all feeling his absence right now. I have included a photo from a family vacation...these are a few of the people that need our prayers right now. Of course, you can see Jon right there in the front.

May the God of Peace and Love bring comfort beyond measure to this family and may this comfort last until we all are reunited with our children in Heaven.

Jon Needs Prayers

2007-11-02T17:25:00.000-05:00

Jon is in need of our prayers. He was in an accident after work on October 29th. According to his Caringbridge site, he fell off of a moving golf cart and hit his head. Currently he is in the ICU...today has been a hard day and there have been some changes in his condition that may mean a different treatment plan.

Not only do we need to pray for Jon, but we need to pray for his family too. Those of us who have dealt with things like this know all too well how stressful it all is. I will be praying for the Peace and Calm that only the Lord can bring....

You can keep up with Jon over at his Caringbridge site.

I've Not Forgotten You!

2007-10-19T06:04:00.000-05:00

Dearest Noah,

ok..ok...I know, I know...I've been a horrible person because I've not been posting about all the wonderful new things you are doing...and well, some of the interesting things you are doing! But please...when you look at me that way, I feel so bad! I haven't forgotten you, really.

I think it's wonderful that you are rolling over and that your mom (well YOU!) dc'ed your ng tube!! That's exciting news. I know how icky those ng tubes can be for both mom and baby..not fun. And look at you gaining all that weight...You Grow Guy!!

So, I was wondering, what's the first thing you're going to do when you get to your "Home Home"??

Your Friend and Fan,
Jenny

ps...I know that you are not looking at me all sad like...it was your dad wasn't it? Bugging you while you were taking a bath...sheesh!

The Deaf Pilot...Cool!

2007-09-26T09:08:00.000-05:00

I was avoiding any kind of responsibilities this morning and I came across a wonderful post that Lillie had written over at her blog A Writer's Words, An Editor's Eye. It's about two people who have overcome great obstacles. Of course, I focused in one the video of Stephen Hopson because he is deaf. Gus was profoundly deaf and I found that, while he was here with us, I developed a heart for the deaf. I am amazed at these people...what heroes they are. Can you imagine for even a minute what it would be like to hear absolutely nothing?? It blows my mind...

Here's a video about Stephen. I hope you enjoy it as much as I did and I hope that you are inspired by his "can do" attitude! I also hope you catch that there was one person, his elementary school teacher, that encouraged him...and I hope that instead of just looking at people who are "different" that we all reach out and encourage and embrace these people...and appreciate them for the wonderful gifts they are! Enjoy!

Stephen Hopson links:

Obstacle Illusions
Adversity University

Little Rooms...All the Cool Blind Babies Have One!

2007-09-25T21:32:00.000-05:00

Really...I stole the post title from what the author of this neat site said because it completely cracked me up! It reminded me of how much it is necessary to have a sense of humor when you have a sick child...it's good therapy!

All that aside...if you have a blind baby or know someone else who has a blind baby, then you need to visit Wonderbaby support groups where you can meet with moms and dads who have "been there-done that"...it's . Not only will you find instructions for making your own "Little Room" but you will find a lot of resources for families with blind babies. Most importantly you can find severa moms and dads who have walked the path before...it's always comforting to know those who are farther along the path...

Look at This Squeezie!!

2007-09-21T20:03:00.000-05:00

Absolutely squeezable....really, I would have a hard time keeping my hands off this little guy!

I was thrilled to read that Noah and his mommy will probably be heading "home-home" on October 25th!! He is eating well and making great progress....his mommy is excited and so am I!

Let's remember to continue to pray for this little trooper, his family (his big sister!). Also, Noah's mom mentioned that her Aunt has had some medical complications and needs our prayers also.

Kindergarten Krazy!

2007-09-04T20:57:00.001-05:00

Word has it that Izzy is loving Kindergarten! And I'm sure those assisting her during school are loving her!! Lots of neat things going on with this little chick so be sure to head over to her blog and read all about all her school adventures...neat!

He's a Whooper, Folks!

2007-09-04T20:51:00.001-05:00

19 pounds! Let me tell you all, this is a BIG deal! Those of us who have taken care of a child who does not thrive know that even a few ounces is reason to cheer. Heck, there were times that we were thrilled that Gus had stayed steady and not lost any weight. I know Damon's mom has had that feeling too....

I am just thrilled that Damon is becoming a Whopper! Maybe he can give some lessons to Noah!

Noah "No-Tubes"!

2007-09-04T20:40:00.001-05:00

Ahhh....there's nothing like seeing your baby without tubes! I love his expression!!

Crystal's new chant is "Get Fat Noah!"...and that's exactly what I'm going to be praying for! Fat is good when you are medically fragile....sometimes, fat is everything. So grow big, baby, grow big!!

Celebrate Brandon Day!!

2007-08-03T09:00:00.000-05:00

And – this is very important – though you and I may wish a longer life for our loved ones, they don't. Ironically, the first to accept God's decision of death is the one who dies.

While we are shaking heads in disbelief, they are lifting hands to worship.
While we are mourning at a grave, they are marveling at heaven.
While we are questioning God, they are praising God."
~Max Lucado

Please go and visit Brandon's Caringbridge site to read about him and about his family who have so beautifully been grieving his death. The above passage was taken from his site and , in all honesty, it makes me weep....but only because it is completely true. Praise God that our children are now healed!!

Brandon's beautiful light still shines one...just much brighter in Heaven. I can't wait to meet him!!

No Rejection For Noah!

2007-08-02T19:36:00.001-05:00

It looks like Noah is NOT going through rejection and that is great news!! Praise God for that...but do continue to pray for Noah because he is still so very sick. The docs are just not completely certain what is going on with the little fellow. Let's pray that they figure some things out and that Noah's edema (swelling) goes down. He's so puffy that his little eyes are swollen shut...folks, that is so hard for a mommy to have to see so let's pray for Crystal too. Be sure to go read Crystal's complete update...

Also, don't forget Noah's big sister and his Dad.

Chest Tube For Noah

2007-08-01T12:11:00.000-05:00

UPDATE: Noah is on his way back to the cath lab so let's be praying about that specifically....you need to go check out his fluffy after-bath hair...so cute!!

The docs had to place a chest tube today. Hopefully, this will help Noah's lung. There will be a TRALI specialist stopping by to see Noah today...let's be praying for Noah's lungs and for the specialist to be able to figure out a great course of action!

Stable But Bleeding

2007-08-01T10:50:00.000-05:00

This little cutie is back in the hospital looking all cute...just hanging out and bleeding....being "stable"! These tough kids can go through the toughest of situations (I mean really, how would you do if you had bleeds often?!) and look up at you and just grin!

Let's all pray for Logan today...pray that his bleeding will subside and that his life-saving transplant will happen soon!

Cool Kidney!

2007-08-01T10:46:00.000-05:00

Kayden's mom has posted a great photo for Wordless Wednesday! It's a photo of Kayden's new kidney before it was transplanted!! Neat!

Are you an Organ Donor???

Let's Cheer Up Sammi!

2007-08-01T10:28:00.001-05:00

Sammi is not feeling well right now...let's all go over to her Caringbridge site(click on the link from the COTA page) and cheer her on! Comments can be so encouraging when things are tough....

BlogLand...We Have Eyes!!

2007-08-01T09:44:00.000-05:00

Look at those little sweet Noah eyes! They make me want to scoop him up and give him a big ol' squeeze...I think that would probably be frowned upon though since he is still on the vent and healing! lol!! Really, folks, that is one of the hardest things when your baby is sick...not being able to hold him all the time...

Be sure to head on over to the family blog and read Crystal's wonderful testimony. She is an amazing woman and so very strong. Noah is blessed to have her as him mommy!

Urgent Prayer Request For Noah

2007-07-30T21:49:00.001-05:00

Noah's mom wrote this yesterday. Please take some time to go encourage this family and let's storm Heaven with prayers for little Noah!! Noah recently received a heart transplant. Feel free to grab the "Pray for Noah" button to place on your blog...just make sure to save it to your computer...

Sunday, July 29, 2007

TRALI

Noah is back in the ICU on a ventilator. They are keeping him very sedated at the moment as they are trying to get an art line then tomorrow they will do another PICC (on top of the 2 IVs he currently has).
They believe the blood transfusion he received caused him to develope TRALI : Transfusion Related Acute Lung Injury. I'm typing this on my phone so I can't link to any information on it but if you Google ''TRALI'' it brings up lots of info on it.
Right now he' covered in hives on the inside and the outside. Benedryl doesn't help and they started Steriod treatment which will also treat the rejection they now believe he's been having (sometimes a mom just knows). The steriods are also causing high blood sugar so they have to give him insulin on top of all the other drugs.
He's in criticle condition and is super super sick. Infection, Rejection, Fluid imbalance, and now TRALI.
This feels like it did the day before he got his heart. When he was really sick and we didn't know when he would get a heart and if it would be in time... Feels more like a sick road instead of a recovery road. But Noah is strong. He's proven time after time that he can beat the odds and pull through. He's my hero. And if he can be strong, then so can I.

Links about TRALI:

TRALI--wiki
MedScape
American Red Cross

Blogathon 2007

2007-07-30T19:45:00.000-05:00

This is a sticky post. Scroll down for current posts!

Sponsor me!

Join me here at Gus’ Gang on July 28^th as I participate in Blogathon 2007! I will be raising money for COTA: Children’s Organ Transplant Association. This group diligently raises funds for families who have children waiting on transplants. Pete and I were very fortunate to not need their services but there are a lot of families out there who do. There are times that insurance does not cover a medical flight, lodging or even some meds and special formulas that these medically fragile children need as they are waiting for organs.

Please pledge money for these families(all pledged money goes directly to COTA)…they shouldn’t have to worry about finances during a time when their child is so very sick….

You can pledge here at Gus' Gang or over at Up the Hill Gang.

Whew...That Was A Lot of Work...

2007-07-30T16:52:00.001-05:00

Sponsor Me!

but very fun!! Blogging for 24 hours is quite an adventure...there were several times I thought I was going down but fortunately I didn't. Stephanie was a great monitor and would check in on me often and that helped! I also made several friends and we would visit each other and comment with words of encouragement.

My goal was to raise $300 and as of yesterday morning, I have raised $320. There is still one more day to donate so if you feel led to do so you can click on the "Sponsor Me" link at the top! I'm blogging for COTA--Children's Organ Transplant Association.

Thanks and Farewell!

2007-07-29T09:00:00.000-05:00

I just want to say thanks to my sponsors Judy, Cindy, Anonymous and Stacey...I really appreciate each one of you! Thanks also to Stephanie who checked on me throughout the wee hours of the morning!

Do we call it dying when the bud bursts into flower? --anonymous

Ahhh...I love this quote! That's how I think of Gus...he was a bud here on earth but now he is a flower in Heaven. It is only in Heaven that we are truly alive...this life here on earth is just a small prelude of what is yet to come. I love how God gives us glimpses of Heaven all around us...sometimes I'm too busy to notice. Look at the mountains, the bright green leaves , the bright colored flowers, and the list goes on and on. What is mind-boggling is that what we are seeing is just the tip of the iceberg! I look at flowers and it's hard to imagine that what I'll see in Heaven is far better than what I am seeing here!!

Make video montages at www.OneTrueMedia.com

Thirteen Things About Gus

2007-07-29T08:30:00.000-05:00

Thirteen things you may not have known about Gus...

His real name is Henry Larsen
His favorite show was the Doodle Bops
He liked to sleep on his right side
He has had 9 surgeries
His favorite book was "Lunch" by Denise Fleming
He had a huge meltdown Christmas morning!
His tears were yellow
He would go through @ 20 diapers a day
He loved to have his hair washed but not his body!
He would have trouble bending in the mornings
One night I failed to turn his TPN pump on and I starved him...but he forgave me! (I thought I had turned it on but the button had not been pressed hard enough...I didn't just forget him!)
He loved to have his central line dressing changed...he liked the smell of the chloraprep.

and...

This is gross but pretty incredible...so says his surgeon...Gus passed 5 of his sutures from his bowel resection!! And we still have them! lol!!

More Gus Dreams...

2007-07-29T08:00:00.000-05:00

From my journal:

FRIDAY, FEBRUARY 02, 2007 08:37 AM, CST
I've been blessed with another "Gus dream"....in this one he was sitting in his car seat and he was signing..."Listen mommy...I want to kiss you....feed me!" ....and the only place I could find to stop and get the little guy some food was a stinkin' Burger King!! Sheesh!!

MONDAY, OCTOBER 30, 2006 10:30 PM, CST

If you have experienced the loss of a child, then you have certainly experienced all the exchausting dreams too! I've read that it's our minds trying to "wrap" itself around the fact that our child is no longer with us. Right after Gus died, I would have these dreams where I was so busy trying to save him and get others to see that he was not dead but alive. These dreams would wear me out...extreme exhaustion! I still dream about Gus..almost every night. I'm glad to say though, that these dreams are not so exhausting anymore...well, except for the one where I was loosing my teeth after being diagnosed with wrist cancer...all this made worse by the fact that the only way I was going to survive was to have a kidney/heart transplant (because we all know that's how wrist cancer is cured! lol!!)...gee whiz!! maybe one day I'll tell you all about the dream I had when we had taken Gus back for a check up with the NICU doctors...it's funny! lol!!
Anyway, please keep me in your prayers this coming month as I write my novel about a mom, a little boy and Heaven....I want this writing to glorify God! This will be part of a project called NaNoWriMo and will last the entire month of November. Pete's writing too...our goal is to write 50, 000 words. I'm really excited about this...I have found that writing has been very therapeutic for me! Will this book be published?? Probably not! I've never been an impressive writer but I do think it will be good for me to get my feelings and thoughts down on paper!!

TUESDAY, FEBRUARY 06, 2007 07:35 AM, CST

Another dream...this one has drained me though. I am just so sad right now.
I had left the hospital room to find out about the man who had the bolt embedded in his head (maybe I watch too much Discovery Health! lol!!) and when I got back to the room, Gus was in a large isolette...looking really healthy! He was wearing a white onesie and he looked great. I was thrilled that everyone was wrong about him dying!! He looked over at me and with his eyes he said " There you are...come pick me up!" And so I did....and then I woke up.....

Great Grayson!

2007-07-29T07:30:00.000-05:00

Oh Grayson...what a dear sweet little guy you are!! Grayson's mom, Judi, has been such an encouragement to me over this past year. Not only has she helped me with Gus' Gang but she has been there for me as I have grieved the loss of Gus. We actually met through Gus' Caringbridge site and immediately became friends. God knew exactly what I needed!

Grayson is a micro-preemie and is doing really well. He recently had tubes placed in his ears and all seems to be going well now. His mommy takes very good care him and his big sister watches out for him too! Take a look at these photos....he's a miracle!

From this:

to this (one of my favorite photos...so sweet!)

to this! See what I mean? He really is a miracle kid!! I love his little toes in this photo...

Btw, Judi is responsible for this wonderful template from BlueBirds blogs and she is also my "button lady"....she makes all of our prayer buttons for sidebars! Thanks a million, Judi!!

RMH Playroom

2007-07-29T07:00:00.000-05:00

Of course, many hours were spent in this room. This is where Belle learned to work puzzles...good times! lol!

RMH Rockin' Laundry Room!

2007-07-29T06:30:00.000-05:00

I don't even think I can tell you how awesome it was to be able to do ALL of our laundry in under two hours!!! I'll have to admit, when we came back home to just one little ol' washer and dryer I was a bit disappointed....I had become spoiled! Wouldn't you?!

$30.....that's all, just $30 to reach my goal....PLEASE!!!

see...you made me go and talk "big"....

RMH Kitchen and Dining Room

2007-07-29T06:00:00.000-05:00

This is where I developed my addiction to brownies and learned to embrace lasagna! Almost every night, a local community group would bring in dinner for those of us staying at the RMH. It was so thoughtful...but they ALWAYS brought lasagna. We started calling it "Manna Two" because like the manna that God daily provide his people, we were daily provided lasagna. Needless to say, we got tired of lasagna after awhile...I felt horrible about that because the people bringing it in really were trying to take care of us. So remember...if you want to take a dinner to your local RMH, try to stay away from lasagna!!

This is the dining area. We met a lot of interesting people around that table. One of the fun memories I have is learning American Sign Language from one of the volunteers...we would meet at the table twice a week during our second stay at the RMH. Our tutor was named Hannah and she was so sweet...I'll always remember her and her willingness to help us learn ASL.

The Yellow Room

2007-07-29T05:30:00.000-05:00

This was one of the rooms we stayed in during our five and half month stay at the Knoxville, TN Ronald McDonald House. Our first room was dark and dreary...and way too small for five of us. When the kids came to stay, we asked for a larger room. It was tight but we learned to survive! There was a roll-away-bed in the hallway and the kids would take turns sleeping on it.

I put all of our school books up on the window sill and we would do schoolwork on the beds. I tried to keep things tidied up but it was hard...it was hard to do much of anything since I was sick with fear. Those were dark days....

I Have Nothing....

2007-07-29T05:00:00.000-05:00

nothing...I can't think of a single think to write about....maybe next time.

Until then enjoy this video:

Meet Tyler

2007-07-29T04:30:00.000-05:00

Tyler is one of our Gus' Gang kids! His mom, Nancy, has a great blog where she writes about life with a micro-preemie. Just a bit about this cutie patootie:

Because he was born so early he has developed a level 3 and level 4 Brain Bleeds, Hydrocephalus which required the placement of a reservoir, an unclosed heart valve (PDA), and stage 3 ROP eye disease with Rush disease.

Tyler is a bit older now so you'll have to go to his family blog to see some photos!!

This may just be my all time favorite photo of Tyler!

Welcome To Holland

2007-07-29T04:00:00.000-05:00

Emily Perl Kingsley is a writer for Sesame Street. In 1974, her son, Jason, was born with Down Syndrome. Her experience with her son inspired her to include people with disabilities in the Sesame Street cast.

Though Down Syndrome was not what we experienced, I really could relate to this story. I know a lot of other families do also.

by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Meet Sammi

2007-07-29T03:30:00.000-05:00

Sammi has Cystic Fibrosis and she is on the national liver transplant list. An estimated $85,000 is being raised to cover her transplant.

You can read more about Sammi at her Caringbridge site. Be sure to leave her messages...it is so encouraging when you pull up your Caringbridge page and see that people have left comments! What a beautiful young lady!

Sponsor me and help people like Sammi!

Charity Crafting

2007-07-29T03:00:00.000-05:00

One of my favorite places to visit...and the place I head first....is Bev's Country Cottage. This gal has every kind of charity pattern you could possibly think of! She has done an awesome job of letting you know if the pattern is a knit, crochet or sewn pattern. Of course, I frequent the preemie section often....

Hey Cindy! There's even a section for you!!

Remembering Emma

2007-07-29T02:30:00.000-05:00

Emma Cody
January 2, 2006 - July 27, 2006

Yesterday was a hard day for Emma's family. You see, yesterday marked the one year anniversary of Emma's death. I met Emma's grandmother and aunt in the waiting room at the hospital. I will never ever forget Emma's grandmother hugging me in the kitchen at the Ronald McDonald House the day after Gus died. Little did we know that in just a short time I would be the one hugging her. Loss and grief have a way of bringing people together and I'm very thankful for Emma's family and I will always hold them close to my heart.

I know the pain they are feeling right now and I want us all to pray that Emma's family will be surrounded with the peace of God. I know that Emma and Gus are friends in Heaven....and that makes me smile. Sweet....

CHARGE Syndrome

2007-07-29T02:00:00.000-05:00

Mike has posted this wonderful video starring several children with CHARGE Syndrome. He has done a fantastic job compiling this montage and he has picked the most perfect song for the background music.

Click HERE to see the video!

Features and Characteristics

The term CHARGE comes from the first letter of some of the most common features seen in children with CHARGE: C = coloboma, H = heart defects, A = atresia of the choanae, R = retardation of growth and development, G = genital and urinary abnormalities, E = ear abnormalities and/or hearing loss. There are several other features associated with the syndrome as well, such as cleft lip and palate, tracheo-esophageal fistula or atresia, facial palsy, swallowing problems, weak upper body strength, seizures, microcephaly, abnormalities of the pituitary gland, and poor immune system. The physical findings and symptoms of individuals with CHARGE syndrome may vary greatly.

Coloboma - This is a cleft or failure to close of the eyeball, which can result in abnormalities in the retina or optic nerve. Colobomas can result in significant vision loss, especially in the upper half of the vision field. Surgery cannot correct a coloboma, however, glasses may improve visual acuity. Children with CHARGE are often sensitive to light and may need sunglasses outdoors as well as indoors.

Heart defects - Approximately 80% of children with CHARGE are born with a heart defect, many of which are minor. However, some of the heart defects associated with CHARGE may be life-threatening. Tetralogy of Fallot is the most frequent type of heart defect.

Atresia of the choanae - Children with CHARGE may have blocked or narrowed passages from the back of the nose to the throat. Surgery can correct this feature, however, many surgeries may be required.

Retardation of growth and development - Most children with CHARGE are born average size, however, due to the heart and nutrition problems or growth hormone deficiency, children often become smaller than average. Most children with CHARGE are developmentally delayed, which is often the result of vision and/or hearing loss. Some children with CHARGE may have mental retardation, with or without brain abnormalities.

Genital and urinary abnormalities - Many boys have undescended testes and a small penis and girls may have small labia. Both may require hormone therapy to achieve puberty. They may also have kidney or urinary tract abnormalities.

Ear abnormalities - Children with CHARGE may have short, wide ears with little or no earlobe and they may be soft due to floppy cartilage. The outer portion of the ear may appear as though it has been snipped-off. Hearing loss is found in approximately 80-85% of children with CHARGE ranging from mild to profound.

source: Special Child.com

Share A Square

2007-07-29T01:30:00.000-05:00

Remember earlier when I posted about Shelly's Share a Square Project? Well, she was kind enough to send me a photo of one of the afghans that has been joined together with black yarn. I think it looks wonderful don't you?

..and here you can see a handful of the squares I've made....that I still haven't sent to Shelly....sigh....that need to be finished off...that's why I haven't sent them...yes! ...that's why!! lol!! I knew there was a very good reason floating around inside my head!

Please consider donating to COTA (Children's Organ Transplant Association)....if you donate, I'll send these squares to Shelly! lol!!

Mandy Is Waiting For a Liver

2007-07-29T01:00:00.000-05:00

Meet Mandy! Mandy has been diagnosed with Primary Sclerosing Cholangitis....she is awaiting a liver transplant. An estimated $50, 000 is being raised to help pay for her transplant. I love her smile!!!

Sponsor me....help people like Mandy!

I Heart My Sponsors!

2007-07-29T00:30:00.000-05:00

Hearts of Worship by the very talented Gwen Meharg!

Thanks a million for your generosity! You all are the best!!!

Judy Alford
Cindy...my new Blogathon Buddy!!
Anonymous
Stacey

That puts the grand total at $270....just $30 more until $300!!! WoooHooo!!!

Sponsor Me!!!

I Found the Good Stuff...Thanks Pete!

2007-07-29T00:00:00.000-05:00

Listening to Heaven by Salvador.....and now Go Light Your World sung by Chris Rice, who by the way, I met and he is really nice!

And here I thought Pete had just left me with a few egg rolls and a jug o'milk! Dear hubs didn't let me down....I have prepared my midnight feast: pizza and peach tea...ahhhhh!!

These are some of the things that people who have huge medical expenses have to do without...please sponsor me and help COTA give these families funding for the much needed transplants. ok...I know that made no sense whatsoever...just sponsor me...ok??

Writing Is Good Therapy

2007-07-28T23:30:00.000-05:00

This is from Gus' Caringbridge site. Writing has helped me so much in my grieving and healing journey. I will always grieve the loss of my precious little boy, but writing gives me a healthy outlet. I encourage anyone who is grieving any kind of loss to sit down and write....just write...it doesn't have to be fancy or even grammatically correct...just write!

SUNDAY, JULY 02, 2006 11:22 PM, CDT

This is a letter I wrote to Gus on June 6th...several days after he went home...I decided to post it here because I've been visiting other sites where mom's have written things that have been helpful and it's my hope that this will be helpful in return. I'm not sure how but yet I feel led to share it!
Sweet Yellow Dumpling Boy,
I have a lot of work to do around the house. It doesn't seem right to just bury your remains then hop right back into taking care of the house and everything else. There are bills to pay, phone calls to make, dirty clothes to wash....it sometimes seems so weird that life goes on. Yet I know for you that life is going on...and I know it's the good life!! I think satan is good at finding our weak spots and he may just be working on mine right now by making me feel guilty that I'm not devastated by your going home. I do miss you but I'm finding it very hard to be devastated because I know you are in the presence of the Lord and that you are safely home. It makes my heart so glad to imagine you with your brother Sam..with Ed Wheeler...with Bop...with Noah, David, even David's son. I look forward to the day when we all are reunited and will live together for eternity. Until then, I am going to strive to live each day with joy and not despair. I am going to strive to make our surroundings more heavenly...more beautiful and peaceful. Gus, God has used you to touch my life in such a special way and you will never be forgotten. Though I struggle with the fact that I will not feel the your weight in my arms, nor will I see your big grin or smooch your neck, I rejoice in the fact that you are healed. I miss you because of my selfishness...
Daddy and I have started a small ministry and we are naming it "Gus' Gang". We've had a lot of people respond...much more than we thought. I really need to sit down and pray and ask God to provide the details for this ministry. There are so many ways to encourage those families who are suffering...I just want to follow God.
Today I'm going to get a book titles "Heaven" by Randy Alcorn. Several people have mentioned it and I'm quite curious...you know I have that goal of reading 50 books this year and I've only read 10 so far! I'm also going to the thrift store to find a few dresses....I feel like trying to wear dresses for a complete week. I need to find my femininity again!! Though I completely loved taking care of you, there were a few things I let go to the side...my appearance being one of those!!
I miss you, I love you and I can't wait to be with you again. My day is starting and I will be loving on your Daddy, Nik, Jake and Belle but I will not have forgotten you!
Love,
Mommy

Izzy Update!

2007-07-28T23:00:00.000-05:00

I have to be the biggest heel in the whole world for missing Izzy's birthday! She's a big five year old gal now!! Here is one of the sweetest photos I've seen....this is her granddad singing Happy Birthday to her....how precious is that?!

For those of you new to Gus' Gang, Izzy experienced a near-drowning a few years ago. Her mom, Annie, has written Izzy's story and you can find it HERE. This family is such an inspiration to me....Annie is such a godly woman full of strength and love. She is collecting "Believe" signs because she believes that Izzy will be healed...I believe that too!!

Join us here at Gus' Gang as we pray for this special gal!!

Have I mentioned that I'm $30 away form $300?? Please consider sponsoring me! I'm blogging COTA (Children's Organ Transplant Association)

Belle Writes About Gus

2007-07-28T22:30:00.000-05:00

I'm listening to Darlene Zschech singing Agnus Dei.....Worthy is the Lamb!!

Belle (age 6) is going to be my guest writer now:

Gus was funny. I always used to ride him around in the hospital in the Gus Bus which was a wagon that had little tiny seats in it. I'm glad he liked it because he was giggling the whole time. I taught him how to sign mommy and daddy but he only signed daddy.

One time, I put him in my baby stroller and showed him around the house...oh, he liked it!!

He was my brother and it's hard for me to let my brother die. I'm glad he's in Heaven because he needs to have good health and now that he is in Heaven he is healed and doesn't need a new liver.

When I see Gus in Heaven, I'm going to hug him and say I missed you very bad! How about let's go play in your Heaven bedroom!

Break my heart....I really miss this little guy!

Journaling Therapy

2007-07-28T22:00:00.000-05:00

I did a lot of journaling while Gus was with us. I snagged an old book in the free bin at the local used book store and turned it into a journal. I altered it by taking some pages out and then covering the remaining pages with scrapbook paper. I used torn "scraps" to journal on. Sometimes I wrote out my thoughts in long-hand and then sometimes I would just print out what I had written on Gus' Caringbridge site.

This is the front of the book....

And here's a bit of the inside. I called this journal "Count Down to Transplant". It's still a work in progress!

Just $30 and I'll be at $300....please sponsor me! Every dollar helps!!

The Prayer Chain

2007-07-28T21:30:00.000-05:00

This is the Prayer Chain I made while Gus was in the hospital before he died. I keep it on our mantle as a reminder to me of God's answered prayers...He answered them all. Sometimes, He didn't answer in the way I wanted Him to but He did answer. If I had started this chain when we checked in the hospital the last time, I would have a much bigger heap of chain. I only thought about this toward the end of Gus' life. I had it taped to the wall and the nurses knew that when I came into Gus' room that I would want to know which links I could add to the chain. They were great and so understanding....I miss those gals!

Here's a link that says "Dopamine Down"...when Gus' Dopamine level was lowered, I added this strip of paper to the chain. I had a good twenty strips with specific prayer requests written on them. A lot of times, prayer requests were duplicated because his need for meds would be different hourly...I really wish that he could have gotten a transplant....

Sponsor me...please.

Brandon Needs a Liver!

2007-07-28T21:00:00.000-05:00

"One hundred years from now, it will not matter what my bank account was, how big my house was, or what kind of car I drove. But the world may be a little better, because I was important in the life of a child." --Forest Witcraft

Meet Brandon..isn't he a doll?! It seemed that Brandon was a healthy little guy when he was born. Just a short 8 weeks after birth, Brandon was diagnosed with Biliary Atresia. He is currently on the national transplant list awaiting a liver. An estimated $100,000 is being raised by volunteers.

Brandon is just one of the many children that need our help. By sponsoring me, you are helping COTA provide funds for these children and their families. Remember, your donation is not due until after the blogathon....

My Radio Station

2007-07-28T20:30:00.000-05:00

I've been listening to Pandora Radio...where you can create your own channel. Right now I'm building my KC & the Sunshine Band channel. You can click "thumbs up" or "thumbs down" on the different songs....for example, right now I'm listening to She's a Bad Mama Jama by Carl Carlton and I've given it a "thumbs up".

OMG!!!! Rick James just came on....gotta go and dance!!

Ok...I'm back....outta breath but back....just had to give some icky song the "thumbs down"!

When I come back I'll be back on topic...I promise! lol!!

Please sponsor me while I am gathering my senses.......

Where All the Crafty Goodness Happens...

2007-07-28T20:00:00.000-05:00

I thought you all might like to see where all of the "Crafty Goodness" takes place when we're working on Gus' Gang quilts. Disregard the clutter everywhere....no time to clean...I'm blogging!! lol!!

This is my main table...I got this from FreeCycle! It's perfect for working quilts and other crafts. I use a dish drainer to hold my pattern books and rulers.

And here's all the Gus' Gang stuff that we use to put together our G.U.S. boxes and quilts. See how I have everything labeled...I'm very proud of myself!!

These are some finished quilts that are ready to be taken to the hospital or mailed out. The shelves underneath are quilts that are in various stages that need to be completed so we can move them up to the "ready to go out" shelf!

We focus on making quilts for children who are chronically ill or medically fragile. If you know of child who would like a quilt, please e-mail me and let me know. It would be our honor and privilege to create a quilt especially for that child!!

Did you know that when you sponsor me that you don't need the money upfront? After the Blogathon, you will receive info about how to make your payment!! That's neat...I thought you had to have the money NOW!!

Thankful!

2007-07-28T19:30:00.000-05:00

High and Lifted Up by Gwen Meharg

I just wanted to take time out to thank those people who have sponsored me! Right now the donation total is $250!! I would love to reach $500!!!

Judy Alford
MoonBugster
Anonymous

Thank you, thank you, thank you!!

G.U.S. Boxes

2007-07-28T19:00:00.000-05:00

Shortly after Gus died, I received a care package with several books of encouragement. I was so touched by this that we decided to create our own package to send to families who are suffering the loss of a child. Linda, the TEIS coordinator for our area, called to my attention that Gus stood for "God Understands Suffering"....and she was absolutely correct! Who knows better than God who sent his only son to die on the cross so our sins would be covered...and so we could have an eternal relationship with Him!! We have seen firsthand, the comfort and love that He pours out on his children who are suffering and missing their own little ones.

It is our desire to send these boxes out to anyone who needs them...free of charge. If you know of someone who you think would be encouraged to receive a G.U.S. Box, please e-mail me with the address. I will keep all addresses private.

Contents:

Heaven by Randy Alcorn
Treasures in Darkness by Sharon Betters
A Journal
Chocolates
A "Cry Blanket"

Cool Camps!

2007-07-28T18:30:00.000-05:00

Camp Twin Lakes

Camps are great ways for medically fragile children to meet others just like them and that means a lot...it's always better if you know someone who has "been there, done that"! We were already planning on sending Gus to Camp Chihopi when he was older...he would have loved it I'm sure!!

Camp Chihopi: near Pittsburgh, PA---camp for children who have had intestinal and liver transplant
Camp Holiday Trails: VA---camp for kids with special medical needs including transplant recipients
Camp Sunshine: Maine---FREE camp for children with life threatening illnesses. Not only is the camp for the kids but for their entire family!
The Painted Turtle Camp: CA---This camp is part of Paul Newman's "Hole in the Wall Gang" family
Camp Twin Lakes: GA---camp for medically fragile children

Please consider sponsoring me and helping me raise money for COTA!

Organs and Tissue That Can Be Donated

2007-07-28T18:00:00.000-05:00

Waiting list candidates	96,885	as of today 5:54pm
Transplants January - April 2007	9,217	as of 07/20/2007
Donors January - April 2007	4,663	as of 07/20/2007

Organs that can be donated:

- Heart
- Lungs (2)
- Liver
- Kidneys (2)
- Pancreas
- Small Intestine

Tissues that can be donated:

- Skin
- Bone
- Ligaments
- Tendons
- Fascia
- Veins
- Heart Valves
- Corneas

Are you an Organ Donor??

source: Unos.org

Gus' Friend Carter

2007-07-28T17:30:00.000-05:00

Gus has several friends in Heaven. Carter is just one of many. I love to think about these kids playing in Heaven...they deserve carefree play and rest at the Lord's feet don't you think!?

Carter was born with gastroschisis which led to intestinal failure. He under went three intestinal transplants...one being a living donor bowel from him mom! This is a fairly new transplant so Carter and his family really were on the "cutting-edge" of research. I wish we could have tried living donor with Gus but it just wasn't the best option...we held out for the best and ultimately it was the best for him...not necessarily for me, but it was for him!

Carter's mom has been a huge encouragement to others, even when Carter died. You can read about Carter and his family at the Caringbridge site written by his mom.

Kayden

2007-07-28T17:00:00.000-05:00

Kayden is one of our Gus' Gang kids that we have been praying for this year. Kayden was born with Bi-Lateral Hypoplastic Kidneys and received his life-saving transplant in November of 2006. He is doing well but there are still medical expenses that build up. A transplant doesn't cure everything, it only makes things a lot better. There are still meds to take and symptoms of rejection to watch for...the adventure is still going on! Please consider donating to COTA so families like Kayden's can easily pay medical supplies and meds.

You can visit Kayden and his family at their blog, My World.

Oh my goodness, this kid is cute!!

Do You Crochet??

2007-07-28T16:30:00.000-05:00

I've been working on crocheting squares for This Eclectic Life's Share a Square Project. These squares will be put together to make afghans for kids with cancer. I'll have to admit, I've made quite a few but I haven't dropped them in the mail yet. My goal is to send these on the way first thing Monday....I'm really, really going to try to do that! lol!!

If you like to crochet, you might want to participate in this fun project!!

I Am Just Thrilled!!

2007-07-28T16:00:00.000-05:00

Look at what I won in the Dog Days of Summer Giveaway Carnival!!

I won a set of these wonderful notecards that were created by Rose Refour, an adult with autism! You can find these notecards over at Noteworthy Crafts. I just love them and can't wait to use them!!

Be sure to visit Betty Refour's Etsy shop! Neat!!

Our Experience With Oral Aversion

2007-07-28T15:30:00.000-05:00

A lot of kids who are medically fragile also have trouble eating...this is known as oral aversion. In a nutshell, they just are not interested in eating and a lot of times they just don't like the way food tastes in their mouths. There's a lot more involved with oral aversion that I just won't be able to address in this post so I'll leave you some links.

With Gus, I worked very hard to avoid oral aversion and I think he would have done well if he had survived. From early on, I had encouraged him to "feel and taste" different textures. He loved chewing on things and I was very pleased with this.

When he was a bit older, we started giving him little bites of food...not much because we didn't want to cause him to stool too much which is common with Short Bowel Syndrome. Two of his favorite things to eat were Gerber Vegetable Puffs and cheese puffs! I know, I know....cheese puffs are not healthy but keep in mind here that Gus was not able to absorb anything so there was no chance he would have absorbed anything "bad". In fact, the cheese puffs were great because of the saltiness. Veggie and Cheese puffs are good because the melt away. When he would suck all the flavor out of the cheese puff, he would often tuck it behind his ear! I miss that!! lol!!

Of course, you'll want to check with your docs before trying these things out!

Mealtime Notions
Solid Foods
Help For Kid's Speech

Meet Logan....

2007-07-28T15:00:00.000-05:00

Meet Logan...isn't he a cutie?! The docs discovered that Logan had necrotizing entercolitis (NEC) when he as just two weeks old. Currently, Logan is in the hospital with off and on bleeds. He is waiting for a life-saving transplant.

Logan is one of the kiddos who is needing monies to cover transplant expenses. Surgery alone is estimated at $840, 000 with $80,000 of that being raised by friends and family members. Even after transplant, Logan and his mom will have to stay in the Pittsburgh area for up to a year depending on how Logan responds to the surgery.

Moya Moya Disease

2007-07-28T14:30:00.000-05:00

Awhile back, I listed some syndromes and diseases that I wanted to learn more about. One of those was Moya Moya Disease.

I was thrilled to get DJ's comment to my post. DJ has put together a fantastic site just chocked full of information about Moya Moya. I am really impressed at the amount of work that DJ has put into this site and I encourage you to check it out. Be sure to check out his link lists too...

I think it's a good thing to learn about these syndromes and diseases because you never know when you may met someone who is affected by them...and when that happens you will be an encouragement to them just because you took the time to learn something new!!

Quick facts about Moya Moya: This does not mean that you can skip DJ's site!!

It is a progressive disease that affects blood flow to the brain.
There is no known origin of Moya Moya
In children it causes strokes or seizures.
In adults in causes bleeding or strokes.

Contest Ending Soon!

2007-07-28T14:00:00.000-05:00

Hurry...don't delay! You only have a little more time to enter in the contest over at Mom2Mom Magazine!!

This month Mom2Mom Mag is giving away a Signing Times package!! If you haven't seen these dvd's you need to check them out...they are great...catchy tunes and easy to follow signs....great for kids and parents! We still sing the "A is for Alex and Alligator" song!!

All you have to do is sign up for their e-mail newsletter...that's it! Easy Peasy!!

Damon Update

2007-07-28T13:30:00.000-05:00

Ok...I'm just a little bit jealous that Damon got to go to Myrtle Beach!! No, really...I think it's great that he and his family got to go on a vacation. I can't even begin to tell you how much stress there is when you are caring for a medically fragile child...it's an honor and privilege but it is stressful!

Damon is continuing to take his formula orally and this means that he is off his g-tube feeds during the day! He is gaining weight and is around 17 lbs now. Him momma says he's almost ready to walk!! Go Damon!!

Continue prayers for Damon...he is doing well but he is still on the transplant list for a liver and small bowel. Let's not forget him even though he is fine for the moment!!

Sweet Hannah

2007-07-28T13:00:00.000-05:00

I've been really thinking about this family lately and I wanted to share them with you. My heart breaks for her family because I know the heartache of no longer having your child. I'm thankful that Hannah's mom shares her feelings on her blog...I know it's both therapeutic to her and so helpful for others who are grieving the loss of a child. Hannah reminds me of my Isabelle. Seeing Hannah's photos makes me want to squeeze my Isabelle much tighter...

Hannah was a beautiful girl who was so full of life and a true joy to her family and friends. Remember this family in your prayers....

From My Journal

2007-07-28T12:30:00.000-05:00

August 21, 2006

These dreams of Gus are wearing me out! I wake up and sometimes I have to jog my memory a bit to realize that he really is not here anymore. Last night I dreamt that I had signed up for a literature class which was right next door to the NICU where Gus was. I had decided to not check in on him for some reason but instead asked one of the mom’s I ran into in the hallway to tell me how Gus was doing. (I would NEVER have done that! LOL!) She told me that he was doing ok..that he had would desat into the 20s (this is a very big deal..not good at all!) on a regular basis but then he would recover and when she left he seemed to be fine. So I went in and the doctors told me that they didn’t know what to do with him so I could just take him home and feed him and see what happened. So that’s what I did…however, I was only able to feed him sterile ice cubes so he didn’t grow very much!! He did babble and had a hard time keeping his diaper on though!! Then the phone rang….and I was yanked out of dreamland….

Dreams during grief are very common.

Last night I had a dream that I was trying to convince people that Gus was truly deaf. One of my friends from church was in the room and was begging me to explain to her what is meant by "good people"....I was really bothered by her because she just wouldn't take any of my explanations! Finally, I told her that "good people" were deaf...so she turned to the rest of the people and told them what I had said. All of a sudden everyone understood!

I woke up feeling like I needed to make sure that everyone at church understood that Gus was deaf and that we were going to be signing until he got his cochlear implant...and then reality hit. Gus is no longer here. I had to smile then because even though he is no longer here with us, he is healed and is in Heaven...and I just can't wait to see him!!

This is important....NO ANALYZING MY DREAMS!! lol!! I know I've got issues and I like that way! lol!!