Prayers Needed for Arianna

Please join me in praying for this sweet little one...Arianna. Her pediatrician has found that her thyroid is not working quite right and is going to be consulting a specialist to determine what treatment options there are for Arianna. Of course, Arianna's parents are worried about all of this. We need to pray for Arianna's complete healing and also for her parent's to be filled with peace and discernment about which treatment to chose.

Arianna is six months old.

Thursday Thirteen #2: Syndromes I Would Like to Know More About

Syndromes are diseases or disorders that have more than one identifying feature or symptom.

Here's a list of syndromes that I would like to know more about. This is not my entire list! lol!

• Prader-Willi Syndrome
• Turner Syndrome
• Kawasaki Syndrome
• Apert Syndrome
• Cri du Chat Syndrome
• Pierre Robin Syndrome
• Treacher Collins Syndrome
• Alagille Syndrome
• MoyaMoya Syndrome
• Progeria Syndrome
• Marfan Syndrome
• Klinefelter S Syndrome and....
  

• Short Bowel Syndrome--of course I will always be keeping up with what's happening with the treatment and prevention of this syndrome that affected Gus.

Plastic Blood

I knew that there were artificial blood products being tested but I had no idea about this plastic blood. Apparently, the plastic blood molecules have the same basic structure of hemoglobin molecules and the oxygen is released and used just like with the hemoglobin molecules. This blood alternative is cheap to make and light to carry...it can be reconstituted with water. It has been developed to aid people in emergency situations.

I think it's a good idea in emergency situations. Gus had several blood transfusions daily and I'm not sure I would want the plastic blood used then. However, if there was very little blood available for him I certainly wouldn't say no!

Interesting....

Friday Link Love

I usually do a link love post over on my main blog, Up the Hill Gang. This week I've decided to start a Friday Link Love here at Gus' Gang! These are a few blogs I found this week while out visiting...Enjoy!

Miracles and Dreams...chocked full of information and stories...very nice!
Our Journey...Miracles Happen...wonderfully written blog and the tag line is wonderful!
Sweet/ Salty...will make your heart weep and rejoice at the same time...you'll need tissue...

Share A Square!

Just wanted to let all of you crocheters know about Shelly's "Share a Square" project for Camp Sanguinity which is a camp for cancer kids. I'm going to be putting together a box from Gus' Gang to send out to Shelly.

If you want to join me for an afternoon of "hooking" (bwahhahhaa!!) let me know and I'll plan a day for us! Gus' Gang will supply the yarns so there will be no extra expense for you...just the gas money to get here! lol!! I'll even make sure we have chocolates for good eats...even better yet, I'll have Jake cook for us! He's a fantastic cook!!

If you want to by-pass the "hooking" with friends, the chocolates and Jake's tasty nabs and you just want to crochet on your own...by yourself...all lonely and such....with no one to talk to....and no chocolates....you can check out all the details over at Shelly's blog.

Well, actually, go check out her blog anyway because it's a gooder!!

Let me know if you want to join me.....

Urgent Prayer Request!

Earlier this morning I received a prayer request for a little girl named Emma who has a very high fever that will not come down. Emma's parents are missionaries in Haiti and there is no hospital near them. Please pray for Emma's healing and also that her parents will be surrounded in peace as they all go through this scary time.

I will update as I get more info....

Updates on all the Cuties!

Again...I have been a slacker...I promise to try to be a better up-dater!


Izzy continues to do very well. All of her therapies are working well and she is smiling and vocalizing a lot more. How exciting for her and her family! School is out for the summer but she will be attending a summer program! Continue praying for Izzy's complete healing!



Damon is two!!! And he got a tractor for his birthday!! I just know he was absolutely thrilled! Damon's liver numbers are looking fabulous and he now weighs 16 lbs. I am so happy with all these stats! I'm still praying for God's protection over this little guy's liver and I would love for you all to do the same!

I'm not sure why I can't fix this big ol' font...sometimes Blogger bites!

Grayson is now reading! He's like a genius or something! lol!! I've heard that he likes the ladies and has never met a stranger. Currently, Grayson is dealing with some fluid that is hanging out in his ears. He'll be going to an ENT soon so let's pray that this pesky little problem can be cleared up!

I'm sure each of these mommas would love to receive encouraging words from you all. You can visit their sites from the sidebar!

Re-Mission

I came across this link just a bit ago for a game geared toward teens and young adults who are battling cancer. This is a free game you download.

Basically, you lead Roxxi, the nanobot, through the body and she fights and destroys the cancer cells. I'm a little disappointed that Roxxi has a huge boo-tay and is very chesty! I also noticed there was a foul language warning on the label...hmmmm...

The game is called Re-Mission.

I haven't downloaded it because I'm trying not to load up my computer...it's new as of last week! lol!!

What do you think???

This Makes Me Sad

I'm sad for the families that lost their loved ones in this crash but my heart is just breaking for the family that was waiting on the organ for transplant. It's all just so really sad....for everyone involved...

UH.....where is the feed I embedded??? It has changed! This was the story about the transplant team that died in the plane crash...sorry that your getting a hotel fire feed. But, that is really sad too.....

It's Been a Year...and I am Well...

From Gus' CaringBridge site:

WEDNESDAY, MAY 31, 2006 03:21 PM, CDT
Gus is having a very hard day. Medically there isn't much more that can done. His blood pressure has continued to trend downward, his blood gas has not been good, it is a struggle to watch. We want to be alligned with God's will. Our hearts continue to yearn and we want things to be as we want them. We are struggling with how to pray.
" I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world"
John 16:33

THURSDAY, JUNE 01, 2006 08:21 AM, CDT
Gus won his long fight yesterday at about 7:00pm. We rejoice for him and celebrate his time with us. We are comforted with knowledge that we will all be together with our Lord Jesus Christ and our Father. Thank you again for all your prayers. Keep praying, Praise the Lord.

Make video montages at www.OneTrueMedia.com

This Day Last Year

From Gus' Caringbridge site:

MONDAY, MAY 29, 2006 10:22 PM, EDT

Gus is improved from where he was a few days ago. His blood pressure and his heart rate have been problems. Our hope is that enough fluid can be drawn off by this hemo-filtration that pressure can be relieved from his chest and organs so that it all will work more effciently and improve him. We had a little scare this morning, the doctors believe that Gus's tissues are holding alot of his sedation medicine. This is keeping him from moving, but we need some movement to get the fluid from his tissues back in his blood stream and be removed. His sedation was cut way back but we weren't getting any response. The doctor thought we may have had a brain bleed but an ultra-sound showed no signs of one and this evening Gus is giving us a little more movement. We cannot express our gratitude for your prayers and words of encouragement. We can feel ourselves surrounded by your love and prayers. "Don't be afraid" the prophet answered. "Those who are with us are more than those who are with them." 2 Kings 6:16

Waiting...

Please join me in praying for Brandon and his family. Brandon has been through a lot over the past eleven months. Currently he is awaiting his second small bowel transplant. You can read all about Brandon at his CaringBridge site and see a photo of him at Gifts From Heaven.

Heavy Heart

From a skinny little "gut baby" to a swollen, blood leaking out of his veins and into his tissue baby. I'm not mad...just very, very sad right now. I hate that he got so bad before he died. He was always so full of life but he died so lifeless...until the peace of the Lord washed over his face. I am convinced that I have never been as close to Heaven as I was at that very moment his heart beat for the last time and I laid him before the Lord.

Sometimes it is so hard for me to wrap my mind around the fact that he was here and now he's gone. I wish I could look through the kitchen down into the den and see him laying on his quilt trying to roll over...or playing with one of sibs...or plucking out his hearing aids...oh, how I miss those hearing aids! I miss putting the toupee tape on the aids so it was harder for him to pull them out....I miss feeding him those little veggie puffs that melt in your mouth...I miss finding cheese puffs behind his ears...I just miss him....and I always will. Yet, in a strange way, there's comfort in knowing that others have experienced the same thing.

It's good to not be alone in your suffering.

Updates

This past Wednesday marked three years since Izzy's accident. If you haven't visited her site and read her story, you need to! Her mom, Annie, is a wonderful mom and very devoted to Izzy's continued healing. We are praying for her complete healing and look forward with excitement to this happening!





Damon has gained some weight! WooHoo...this is a HUGE biggie for short gut kids! Good news concerning his broviac line too...they were able to draw blood! Another biggie...a lot of times an occluded line means that the line has to be replaced which means another surgery...not fun! Now...his Mic-Key button is causing him some problems so we need to be praying about that issue . Other than the button, Damon is doing well and visiting the docs in Pittsburgh on a regular basis. I'm sure his mom would appreciate some comments at his Caringbridge site!

Sonya goes to church with Aoife's family and she has told me that Aoife seems to be doing very well and the she looks good. I've asked Sonya to write a post with a current update so be looking for that soon!

The Interactive Body

I just found this Interactive Body that explains all about the different organs and tissue that are transplanted....neat!


Speaking of neat, I found this button over at The Wait and Wonder. Thanks Moreena!! Grab the button for your blog by right-clicking and saving to your computer. You'll have to upload it to your image hosting service...and then link to Share Your Life.

Grief Dream #1

Having strange dreams after your child has died is very common. At first, my dreams would completely wear me out. I was emotionally, menatally even physically drained after a night of dreaming of Gus. The dreams weren't scary...just hard work. It was my minds way of processing what had happened...the fact that Gus was no longer here with me. Grief is hard, hard work my friends so if you find yourself having these types of dreams and they are hard to get through...remember that you're not alone and that this is perfectly normal!

Grief Dream #1

I'm sure this is not my first grief dream but it is the first one I documented.

September 13th, 2006

We had taken Gus back to the NICU docs for his yearly physical. Dr. Nalle was supposed to see us...we waited for quite some time and then Dr. Wooldridge came in and told us that Dr. Nalle had the "trots" (aren't dreams funny!) and that he wouldn't be in to see us. He asked if it would be ok if Dr. GaLoop could see us and we said that would be fine....I have no idea who Dr. GaLoop is . When he gets there he tells us that they don't think the original sepsis that Gus had was still present...they couldn't find any sign of it in his neck. He told us that he wasn't sure the Gus would be able to think ot talk and the Gus rolled over and said "laryngiscope" and Dr. GaLoop was really impressed....then I woke up!

I'd love to hear some of your grief dreams!

Devastation

I saw this photo over at CNN and all I can do is shake my head...I can't even begin to imagine what this is like...what it is like to live through something like this. When I see natural disasters like these, I can't help but wonder about all the people who are dependent on medical equipment such as TPN pumps, oxygen, nutrition pumps, etc....most pumps have a battery back-up but sheesh...who wants to worry about a battery dying in the midst of all of this??? And TPN needs to be in the fridge...and what if your fridge has been blown away...and what if your meds have been blown away....too much, too much....

... though he stumble, he will not fall, for the LORD upholds him with his hand.
Psalm 37:24

Baby Gonzalez

I wrote about Baby Gonzalez over at Up the Hill Gang and wanted to share the post over here also. This is such a controversial subject....I have so many mixed feelings about this!

Damon Update

Damon's parents got a call from Pittsburgh but not for a transplant. The docs there are very concerned about a section of his small bowel that doesn't look too good. This is very discouraging news for this family because Damon doesn't have much small bowel to spare. The docs have also decided to change his TPN to see if that will help him gain more weight. Folks, we really need to be praying for this little guy...the lipids in TPN can permanently damage the liver. Please pray for his parents too...these people are soooo nice and it breaks my heart knowing that they are having to "ride this rollercoaster" as they wait for Damon's life-saving transplant.

Damon is driving his brother around! lol!!

Izzy Update..Finally!

I have been a complete loser when it comes to keeping you all updated about these kiddos...and I'm sorry for that. So, without further delay, I give you an update on Izzy!

Izzy continues to do well with her therapy and her and Bear, one of her therapists, are becoming good friends. Annie wrote that the IEP has been completed (woohoo!!) and it looks like Izzy will be in the classroom more often since it is believed that she understands much more than originally thought!! That is so exciting!!

Izzy is so blessed to have such a wonderful and caring family who refuses to give up on her. All her sibs are capable of helping with her exercises and such at home...I think this is so important for Izzy and for her sibs. People sometimes forget that the best therapy there is for children is that of their sibs. Annie is a very smart mom and knows this!!

I love seeing how God is working through Izzy!! Neat!

Truth or Lie??

Gus' "Nasty Dog"...he would rub this dogs ear as he went to sleep.

I just found this link in my favorites file... I think it's a good one!

Must Read Update on Izzy!

Go read Annie's neat post about Izzy's castings and the Chik-fil-a blessing! What a neat post Annie has written!! As always, she is inspiring....

Grieving...

I keep on going back to flipping through FOX...CNN...MSNBC. My heart is so burdened for the parents of the students who were killed at Virginia Tech. I'm almost a year into grieving the death of my son, Gus, and I know it is something I will feel until I am reunited with him. It just makes me sad to think about all the moms and dads who are just beginning this journey. People tell me that grief gets easier...I think it changes but doesn't really become easier...just different and the first few weeks after your child has died are tough. No matter how your child dies, it is shocking. One minute they are here and then the next they are gone. Gus was chronically ill and awaiting a transplant so we knew there was a possibilty that he may not survive...I can't even wrap my mind around one of my children being murdered. So sad...I'll be praying.

Izzy Update

Annie has asked us to pray specifically for Izzy's hip. Her doc wanted to refer her to an orthopedic surgeon for a procedure, but after much prayer, Izzy's family has decided to wait. Izzy's family will do exercises with her for the next couple of months...and of course everyone will be praying! I can't wait to see what the Lord is going to do!!

Also, you need to read this post. I just love the way God provides for us...always abundantly!!

Quilts for Kids

Grayson with his quilt

One thing that we do at Gus' Gang is create and send quilts out to children who are chronically ill. It is our privilege and honor to pray for the specific child as we are making the quilt especially for them. If you would like for us to send a quilt to a child, please e-mail me! We make these quilts and send them to the child at no cost.

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!!

Meet Isabelle!

Isabelle is a sweet little girl who is a "near-drowning" victim. She attends school and just this past week she took some really neat Valentines to her classmates! I can tell that she has a wonderfully attentive mother and family. I found the following quote from Isabelle's blog to be so sweet and touching:

Isabelle is so healthy, she is so beautiful and she is so sweet. She is a little doll. I feel like an expectant mother, waiting for the birth of the baby. I am waiting and expectant that she is going to blossom and that she is going to do great.


There's so much I don't know about near-drownings and what therapies there are to help these people. I am looking forward to keeping up with everything going on with Isabelle and her family and I know that we all can learn from their experiences! So make sure you visit Isabelle's blog and don't forget to add her to your Prayer List.

Here are a few sites I came across that you might find helpful:

• Article at The Doctor Will See You Now I found this article to be helpful in explaining the basics. I'm sure that there are other sites that are more detailed.
• HUGS Foundation This is a support group for families with children who have nearly drowned.
• Article at Answers.com

Lauren Myers..Resting in Jesus' Arms

Please join me in praying for the family of little Lauren Myers. She died this past Monday morning...she was only 16 months old. Lauren's grandmother, Betty, is one of Gus' Gang's supporters. You can read her obituary and leave your condolences here. Even if you do not know this family, encouraging words are aprreciated. I can't even begin to tell you how many "strangers" sent us messages when Gus died...they all meant so much to us. So, please don't be shy about signing guestbooks....

Valentines ...to Heaven

Alive! Unveiled Heart Series

Gwen Meharg

Valentines...... To Heaven

This Valentine is not of the ordinary kind,

Its still filled with love...and blessings inside;

But mine has to be sent on the wings of love...

You see its destination is the Heavens above.

Its not being sent to my parents so dear,

For they are still with me each day of the year;

Its being sent to my child...who left earth so soon,

Who's now in the Heavens with the stars and the moon.

The message is the same as your valentine,

"I love you...my sweet precious child of mine;

My love is still deeper than the ocean is blue,

And its sent with hugs and kisses...from me to you."

"I know you are with me each and every day,

You listen as I talk to you...and hear what I say;

For that is one thing that disease cannot do......

you'll always be apart of me...and me a part of you."

"I know God did not give you the awful disease,

Thank Him for His comfort He gives me...would you please?

I dont know what I would do without His undying love...

Sent to bereaved parents from the Heavens above."

"I know you are in the best of care,

But it's so hard for us left on earth to bear;

Could you put in a request from us left behind...

For God to send the knowledge..so a cure we can find."

"So that no other family has to go through this pain,

Our lives without you will never be the same;

When I get lonely I will look to the sky at night...

And see you shining down your big bright light."

"Happy Valentines day sunshine...I miss you so much,

I know you know how many lives you have touched;

You'll always be mine...I love you with all my heart,

I know we be together again...and then we'll never part."

So you see the meaning is still the same...

The method of delivery is the only change;

Mine must be sent by a little white dove...

On the wings of Love.

Author~ Laura/Heavenly Lights Childrens Memorial
Love~ Claire (Mommy to Laken in heaven)

Prayers for Damon!

I am so excited!! I received a letter from Damon's mom this past week...and they have set up a Caringbridge site for Damon!! WooHoo!! Damon and his family will be traveling to Pittsburgh at the end of February for a clinic visit...so let's keep this family in our prayers. I hope that I can post a photo of Damon really soon because he is such a cutie and you all need to see him! He has a swirl on his hairline...swirls make me melt! All my kids have a swirl..we call them "tornadoes"!! Click on over to Damon's Journey and leave a comment...it is so encouraging to get comments!!

Preemie Hat With Kanzashi Flower

I am so addicted to my Knifty Knitter blue loom....and I'm also addicted to making these kanzashi flowers! I first saw the kanzashi flowers over at One Hour Craft and I loved them. I'm trying to figure out how to make the flower detachable so that it can be added to the hat...or not. I don't want to use a pin back because it's a preemie hat. It will come to me....

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

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

Blood Donations...

Yesterday, Pete and I donated blood. We do this every three months. Gus received a gazillion blood transfusions before he died...so it's important to us to donate. We truly appreciate the others who have donated. Also, we really enjoy visiting these gals that work the blood mobile..they are a hoot!! Frankie was able to catch my roly-poly vein quickly which was a huge blessing! lol!!

Pete donating blood.

This is Frankie "staging" the donation....I finished quickly this time!

Gus' photo of him getting a blood transfusion was used at the sign-up area. It made me smile!

Tips for a Good Donation Experience

Wordless Wednesday...Dressing Change

See more WW over at 5 Minutes For Mom!

Prayers for Joel's Family

Please visit Joel's Journey and read about a sweet little boy that bravely fought Stage 4 Neuroblastoma. There are many wonderful posts that glorify the Lord through this huge trial. I will be praying for Joel's family and I ask that you do the same. Visit Joel's Journey and leave encouraging words for this grieving family.


This is from the St. Jude's website...

Current Research:

• Basic scientists continue to investigate what factors cause neuroblastoma cells to form in the first place.
• A new anti-neuroblastoma antibody is currently under production at St. Jude to provide an additional tool to destroy residual microscopic disease.
• We are also investigating new ways to remove tumor cells contaminating the bone marrow by using drug combinations or laboratory methods to filter out the tumor cells.
• New treatments with drugs that inhibit cell receptors (on-off switches on tumor cells) or cause cells to undergo differentiation (maturation) are under evaluation in early clinical trials.