Monday, July 30, 2007

Urgent Prayer Request For Noah

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


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:

American Red Cross

Blogathon 2007

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

Sponsor me!

Join me here at Gus’ Gang on July 28th 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...

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.

Sunday, July 29, 2007

Thanks and Farewell!

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!!

Thirteen Things About Gus

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.


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

More Gus Dreams...

From my journal:

FRIDAY, FEBRUARY 02, 2007 08:37 AM, CST
I've been blessed with another "Gus dream" 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'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!

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 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

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

RMH Rockin' Laundry Room!

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!!! made me go and talk "big"....

RMH Kitchen and Dining Room

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

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 was hard to do much of anything since I was sick with fear. Those were dark days....

I Have Nothing....

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

Until then enjoy this video:

Meet Tyler

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

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

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 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

One of my favorite places to visit...and the place I head 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

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

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

Share A Square

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

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 people like Mandy!

I Heart My Sponsors!

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

Judy Alford new Blogathon Buddy!!

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

Sponsor Me!!!

I Found the Good Stuff...Thanks Pete!

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??

Saturday, July 28, 2007

Writing Is Good Therapy

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 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 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 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 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!



Izzy Update!

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 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

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

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

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!

"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

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...

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 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!!


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

Thank you, thank you, thank you!!

G.U.S. Boxes

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 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.


Cool Camps!

Camps are great ways for medically fragile children to meet others just like them and that means a'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

Waiting list candidates96,885as of today 5:54pm
Transplants January - April 20079,217as of 07/20/2007
Donors January - April 20074,663as 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??


Gus' Friend Carter

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 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 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??

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!!

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

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....

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

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!

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

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'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!!