Wednesday, December 12, 2007
Tuesday, December 11, 2007
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.
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!
Sunday, November 18, 2007
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....
Wednesday, November 07, 2007
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.
Friday, November 02, 2007
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.
Friday, October 19, 2007
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,
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!
Wednesday, September 26, 2007
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:
Tuesday, September 25, 2007
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...
Friday, September 21, 2007
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.
Tuesday, September 04, 2007
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!
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!!
Friday, August 03, 2007
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."
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!!
Thursday, August 02, 2007
Also, don't forget Noah's big sister and his Dad.
Wednesday, August 01, 2007
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!
Let's all pray for Logan today...pray that his bleeding will subside and that his life-saving transplant will happen soon!
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!
Monday, July 30, 2007
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...
Links about TRALI:
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.
American Red Cross
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.
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
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 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 incredible...so says his surgeon...Gus passed 5 of his sutures from his bowel resection!! And we still have them! lol!!
FRIDAY, FEBRUARY 02, 2007 08:37 AM, CSTI'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.....
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!
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!!
$30.....that's all, just $30 to reach my goal....PLEASE!!!
see...you made me go and talk "big"....
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.
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....
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!
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.
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!
Hey Cindy! There's even a section for you!!
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....
Click HERE to see the video!
source: Special Child.com
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.
..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!!
Sponsor me....help people like Mandy!
Thanks a million for your generosity! You all are the best!!!
Cindy...my new Blogathon Buddy!!
That puts the grand total at $270....just $30 more until $300!!! WoooHooo!!!
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
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!
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 (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!
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!!
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....
"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....
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.......