Izzy's New Smile!

Check out Izzy's new smile!! I'd be smiling too if I had such awesome siblings that would take time out to read to me!!!

Cry Blanket

This is the blanket that we include in our G.U.S. Boxes.

The “Cry Blanket”

When I was in the hospital with my son, Gus, I cried often. The nurses would come running with boxes of tissue. My tears were constant and the tissue didn’t last long so I asked for a blanket. I was brought a crib blanket which was fine…later in the day I found a small pretty blanket left for me to cry into. I’m not sure who left the blanket but it soon became known as the “Cry Blanket”. I loved this blanket and still use it often! I realized , with this blanket, that the tears of a broken-hearted mother are much too precious to fall into a mere tissue…these kind of tears need to fall into something soft and pretty. So, this is your blanket to cry into…..

You’ve kept track of my every toss and turn
Through the sleepless nights,
Each tear entered in your ledger,
Each ache written in your book.
Psalm 56:8

G.U.S. Box

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"

Cry Babies!

This is what my nurse practitioner and I did today at my appointment!! I went in for my six week after-delivery check up....several years late! lol!! The FNP was so sweet...she told me there were no words she could say to me to make any difference...and then her eyes welled up with tears...and we cried. Ahhh...but she did make a difference! She didn't need words...just the fact that she would cry with me and allow me to share with her a few memories of Gus. I consider my visit with her a "hug from God"....she truly blessed and encouraged me today!

Thank You!

card from Harris Communications

I wanted to take time out to tell Kay thanks for her gift to Gus' Gang! Kay, you are so thoughtful and kind...we appreciate your generosity immensely. May God bless YOU!!

Weekend Reflection

Because I love Judi so much for encouraging us to reflect over the past week, I've decided to start posting WR here at Gus' Gang!

• Grayson still has his ear infections but he has gained a pound!!

• Damon returned home from the Children's Hospital of Pittsburgh...for one day only! He and his mom returned due to Damon spiking a high fever. His mom says he seems to be feeling better and a new nutritional regimen has been started. Sometimes the smallest changes can make the biggest differences!

• Izzy had her dental surgery this week and all went well!! Praise God!!

I Timothy 1:17
Now to the King eternal,
immortal, invisible, to God who alone is wise, be honor and glory forever and
ever. Amen.

See more WRs over at Judi's!!

Grayson's Ears

Carol Kramberger

"Corn Harvest at the End of Summer

Get it?! Bwahhahhhaa!!! Really, all joking aside, Grayson needs prayers for his ear infections that will just not clear up. On a good note...he has gained some weight!! WooHooo for Grayson!

Damon is Back in the Hospital

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

Neurostorming

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






Fact sheet about Neurostorming

Izzy's Dental Procedure

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

This Thursday, Izzy will be having dental procedure. Let's all remember to pray, especially on Thursday, that Izzy will be comfortable, that the doc will perform the procedure well, and that all of Izzy's family will be at peace while she is undergoing the procedure.

Please visit Izzy's blog to read all about this sweet little girl. Feel free to grab the button at the top to place on your blog or website!

Damon Update

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

I am thrilled!!!

Look at this wonderful button Judi has made for me!! Isn't she the BEST!?

Thank you soooo much, Judi!!!

Damon Update

See that sweet little boy there standing on the sled with his big brother and mommy?? That's Damon and he is a complete cutie patootie!! Right now, Damon is in the hospital with a nasty infection so we all need to be sending up some extra prayers. Pray that his line does not have to be replaced, that he doesn't lose any more weight, and that his family will feel God's peace in this hectic time. Pray especially for his big brother, Cole. Siblings have a tough time when things like this are going...it's scary for the parents so try to imagine how it feels to someone young.

Damon is on the waiting list for a liver/small bowel/ pancreas transplant at Children's Hospital of Pittsburgh. Pete and I met Damon and his family when we shared a room during transplant evaluation.

Hopefully, tomorrow, I'll have a good news update for you all!!

If you like, you can send a card to Damon (Hiett) through Children's Hospital of Pittsburgh.

Izzy's Button

I you haven't been to Izzy's blog you need to go there and read all about this wonderful little girl and her family. Her mom, Annie, is so good about explaining the different therapies that Izzy is undergoing. I am so excited to see what God has in store for this sweet little girl and awesome family.

Be sure to check out Izzy's new wheels...in raspberry! How cool!!! I would pick raspberry too! I think that color is perfect for Izzy!!! I'm looking forward to seeing a picture of her in it...neat!

I'm sure Izzy's mom would love for you to place this "Pray for Izzy" button in your sidebar. Prayer is powerful, healing and so encouraging!!

Portagen and Grief

After Gus died, I decided to offer the rest of his Portagen on the Oley Foundation's website. Portagen is really expensive and I hoped that someone else could use it. We were very fortunate to have Gus' Portagen covered by insurance but I know some people have a really hard time getting their insurance companies to cover things like this. So, it was important to me to pass this formula on...besides, it is not my Portagen but God's! I posted the cans about four months ago.

This afternoon I got a phone call from a man in Wisconsin named John. John has requested the four cans of Portagen. Great! And now here we go....that lovely grief monster has reared it's lovely head and I am at this moment bawling like a big ol' baby!! But, that's why "grief work" is hard...it sneaks up on you!! I'll be fine...I'll just lean into the pain and, more importantly, lean into God. He has always comforted me and I know He will continue to do so.

I am thankful that we were able to find a formula that Gus was able to absorb through his short little small bowel! I'm thankful that God provided this formula for us. I'm thankful that it didn't smell like Pregestimil!! And now, I'm thankful that John will be able to use these four canisters of formula....

Evan Early..book review

Isabelle finally found a book at the library about a baby in the NICU. She has been asking me to find her one for quite awhile...I'll be honest, looking for a specific book in the kid's section at our local library is like looking for a needle in a haystack. Everytime I go there, I fight the urge to put everything in alphabetical order...drives me nuts!! Well, this past week, Isabelle pulled Evan Early off he shelves and ta-da....she had found her book!!

Evan Early is a book about a little girl who is counting down the days until her little brother Evan comes home from the NICU. Natalie, the big sister, gets to visit her brother in the unit and she sees what a preemie looks like, sees the nurse weigh the diapers and hears the beeps and alarms. The author goes on to write about the time when Evan is really sick and things are really scary for Natalie...

"For two days, Dad and Mom stay away. I'm scared and lonely. Will
Evan Early be okay? What if Mom and Dad forget about me?"

But then, I love this one,

"Finally, Mom stumbles in the door on the third day. Her hair is
flat. She wears the same clothes she did the last time I saw her."

I KNOW you moms out there who have lived the NICU life can relate to that line! lol!! The book ends with Evan still in the NICU. The last two pages are devoted to questions and answers.

Evan Early is written by Rebecca Hogue Wojahn and illustrated by Ned Gannon.

It's Party Time!

It's time to Party!

Welcome to Gus' Gang!! My name is Jenny (Jenny-up the hill) and this is a blog that I have started to journal about our family ministry, Gus' Gang. My husband and I started this ministry in memory of our son Gus who passed away May 31, 2006. Gus was waiting on a liver/small bowel transplant which would have taken place in Pittsburgh. His little body just was not able to hold out for organs and he peacefully went to Heaven. We miss him terribly but at the same time we rejoice because he now is living the life he so deserved!

It is our desire to come along side others who are caring for medically fragile children and of course, those families that are grieving the loss of a child. We do this by sending quilts to children, sending out grief packages(containing Heaven by Randy Alcorn and Treasures in Darkness by Sharon Betters, a blanket, journal book and chocolates), crocheting/knitting preemie hats for local NICUs and making "buddy dolls" and quilts for local children's hospitals. Of course, the most important thing we do is pray for these precious children and for the Lord to shower grieving parents with the peace that He has showered on us!

If you know of someone that you would like a "grief package" sent to, please e-mail me with their information. The "grief packages" are free. I will keep all information confidential. Of course, please let me know if there is a child we need to be praying for....I'd love to add them to the "gang"!!

Head on over to 5 Minutes for Mom to visit other parties!!