Apologies..and a request

[Blu]

Sorry for my long and sporadic abscence my freinds. A lot has been going on here, some good (a new Grandson) and some very bad. Heres the gist..



Well...after a few weeks of having our newest Grandson (Aydian James Perry 12/01/06) home with us and him doing pretty well we had to take him to Lutheran Hosp. in Fort Wayne to have his rapid breathing checked out.
 
He had been doing pretty well, holding his head up, eating and gaining weight and opening his eyes, and of course liking Pampaws beard agaisnt his head and grabbing it,etc. But, we had noticed that he would breath VERY hard and fast most of the time and at times would seem to stop breathing for a short time.
 
The docs requested he be brought in ASAP for tests and yesterday was the day. It turns out that he has the same syndrome (DesGeorge Syndrome) that our precious Grandaughter Allena was born with, and passed on from after 17 days a few years ago.
 
The good news... this ISN'T as bad as hers was. He ONLY (at this point) has a pretty serious heart defect (Allena had the same problem,and surgery, and came thru VERY well..just too much other stuff wrong). Holes and a lot of plumbing and valves in there that arent hooked up right, that requires his heart to work a lot harder than it should, pressure not good, etc., and docs were so worried that he could go into cardiac failure that they would not send him home last night and put him in Pediatric ICU. I guess weve just been fortunate so far that he hasnt experienced that since his birth.
 
He will be transported to Riley Childrens Hosp in Indy this morning via Lutherans ALS ambulance for heart surgery probably Tuesday.
 
The docs are pretty optomistic that this will go pretty well but caution that "it is still a very serious life threatening condition with severe risks".
 
Folks...again I ask you to keep our little guy in your prayers and thoughts.We have great hope and faith that this will turn out OK but of course still worry and...remember Allena.
 
Mom simply cannot got thru that again,( doubt any of us can really) and is now on her own as Dad cut out months ago and denies the child is his. (impossible to deny now...he is the carrier of DesGeorge and, and it can only be passed down from the father)
 
She is staying in the Ronald McDonald house during this time so at least that is taken care of this time.
 
If any of you feel lead to send a card it would be much appreciated to just let her know that folks are thinking and praying for her and Aydian.
 
The addy is: 
 
Riley Hospital for Children
702 Barnhill Dr.
Indianapolis, IN.46202
c/o Aydian Perry
 
Thanks folks, PLEASE keep praying ( We KNOW it works) and I will keep you informed of how things go.
 
Much Love, Randy

Please knowthat I am so sorry for my silence.

[Roswell]

Blu Sugar,
 You don't have to apologize for being with your family when they needed you. I am so sorry to hear about your grand son.  It's impossible to explain the love between a grand parent and a grand child. It's a "different' kind of bond than with our kids. Maybe because we've been though it and we know what's really important or maybe because we aren't struggling to make ends meet so much as when we were younger (hopefully) so we make the time to  just enjoy them. I can't imaigine how you must feel.
 OK folks, lets get on the prayer wagon and see if we can get a Christmas Miracle for this  sweet little baby boy.
 Ros

[sugar]

Randy,

I'm so sorry you and your family have to go through this very difficult time.  But I believe in the power of prayer and will certainly be praying for Aydian, his mom and all of you - including his father.  At our church we have a family that has gone through a tough time with their baby's heart - it was all messed up too - Surgery on December 3 and little Kailynn is doing fine now.  There's still some tough times to go through but she is on her way.

Thank goodness for Ronald McDonald and his houses!  I've known several people who have stayed at them in Columbus, OH; Morgantown, WV and other parts of the country.

Anyway, please know that this is in God's hands and keep us posted.

Sugar

[IndyCarzGo]

Randy:

Please never forget that you have someone watching your back at all times...If there is ANYTHING... ANYTHING at al, i can do for you and the wife an any time please let me know....

I will hope and pray thet The Source watches over your little one and keeps you all well....

Again, tf you need anything please feel free to call upon me...It is and will always be an honor and privlidge.

Indy

[racin_girl72]

Randy,

I'll make sure to keep you and your family in my thoughts!  May you get the best gift of all this Christmas, a strong healthy grandson that will bring love and joy to your family for many, many more years to come!

Best wishes to your family,

Cami

[nascarbabe2U]

Big Brother & Family...........Help & Prayers are on the way ASAP. If you NEED anything please email or call me. I'll be there as fast as the old silver bird can fly.

Much Love, Kim


I also thought I'd post a tab bit of info on the topic at hand. Also I have an web site address for the hospital. On the home page you can also send an email to the patients room. You can also send a post card to the room. Anything received after 10:30am will be delivered the following day.

http://rileychildrenshospital.com/

Click on email a patient: Family of Aydian Perry....little man Aydian's mommy's name is Erin



DiGeorge syndrome (also called congenital thymic hypoplasia, or third and fourth pharyngeal pouch syndrome) is a birth defect that is caused by an abnormal chromosome and affects the baby's immune system. The syndrome is marked by absence or underdevelopment of the thymus and parathyroid glands. It is named for the pediatrician who first described it in 1965.

DiGeorge syndrome is sometimes described as one of the "CATCH 22" disorders, so named because of their characteristics-cardiac defects, abnormal facial features, thymus underdevelopment, cleft palate, and hypocalcemia-caused by a deletion of several genes in chromosome 22.

If I get any ofther info I'll pass it along. I'm looking into the Ronald McDonald House where she will be staying and will let you know if there is a way anyone can send gift cards for the basics she'll need while she is there etc.

[sugar]

Shandera,

You truly are one of the Greats!  Thanks for the information.  I sent an e-card.  I think that's a great idea for the gift cards.

Thanks for your caring heart.

Sugar

[nascarbabe2U]

Oh now stop that will ya or I'll cry.

This is just me and what I love to do. Helping others is what makes me tick. I live by the rule....treat others as you wish to be treated.......it's simple & easy.......but thanks for the kudos.

I just talked with Randy, he was waiting for Erin to call. So far so good. Everyone is praying hard and doing ok. Grandmama Jay is going down on Sunday and stayin until Wednesday so Erin wont be alone.

[Busch Babe 899]

My prayers for all of you...It is so hard to find out a little baby has a life-threatening condition, and to have to go through a sick baby in your family more than once in your lifetime is terrible...makes you wonder how strong God thinks you are, if he only gives you what you can handle...and gives you this, yet again...

They have made great strides in pediatric heart surgery. Enjoy that little baby, and know that we are all praying for his recovery.

Let me know about the gift cards, too, I did that for a friend who was in a similar situation a few years ago, for food and groceries, as she and her husband had 4 other children at home, and between the 2 of them barely made enough money to feed them with both of them working full-time...but when their 5th baby was admitted for a serious heart defect, and she had to take time off work to be there, their financial status suffered immediately. That's a wonderful idea, even if this ISN'T the case here, you can spend a lot of money eating out when having to stay away from home near a hospital.

[nascarbabe2U]

I’ll keep doing more research but so far this is what I’ve found for those of you who want to send gift cards. With any luck when Jay gets there on Sunday she can give me a layout of what’s what.

I thinking a Visa Gift Card might be the most useful. You may purchase them at a local store, gas station or online. If you purchase the gift card from the URL below they will also deliver it to the recipient.

I spoke with the folks at the hospital who told me that other than the hospital cafeteria and the McDonalds also located within; there is nothing in walking distance. They couldn’t nail a person down to find out if the Visa Gift cards can be used at either place….sorry.

If you choose to purchase a Visa Gift Card…. double check and see if the person can take cash off of it or if it is strictly to be used like a Visa. I know there are 4 versions of the gift card.

I’d just like to Thank everyone and anyone who helps out. Randy and his family hold a very special place in my heart and to see them having to go through this once again and at this time of year just breaks my heart.

Peace To All

http://www.giftcards.com/

[Blu]

Thanks ALL,  it means a LOT and I do mean a LOT!!  Words to express my feelings right now escape me.... what incredible folks you are. We are TRULY blessed...TRULY.
 
 Not much new to report so far. The surgery was scheduled for Tuesday but yesterday they did some tests and found some blood in his stomach. 
Have run some tests and the docs were supposed to have a conference to decide WHICH problem thye need to address first.
 
Not sure as of this moment what the problem is exactly but will post more as I foind out and any other details.
 
He  is doing pretty well otherwise ,is eating and alert and VERY vocal !! LOL 
 
My wife (Jay) is going down there tommorrow and staying thru wed (at least), so shoudl,ahve good updates as things progress.
 
Thank you all, You have no idea what your just thinking of him means to us right now. It is just VERY difficult for us all right now. Keep praying 
 
Will update ASAP, Randy 

[6Taurus]

Will keep him in our prayers as well Blu!

[kelloggs5TLfan]

You, your family, and the baby will be in our prayers. God Bless

[flamehothead]

Gotcha covered here Blu.

And I would like to say Welcome to kelloggs5tlfan.

[IndyCarzGo]

Thanks ALL,  it means a LOT and I do mean a LOT!!  Words to express my feelings right now escape me.... what incredible folks you are. We are TRULY blessed...TRULY.
 
 Not much new to report so far. The surgery was scheduled for Tuesday but yesterday they did some tests and found some blood in his stomach. 
Have run some tests and the docs were supposed to have a conference to decide WHICH problem thye need to address first.
 
Not sure as of this moment what the problem is exactly but will post more as I foind out and any other details.
 
He  is doing pretty well otherwise ,is eating and alert and VERY vocal !! LOL 
 
My wife (Jay) is going down there tommorrow and staying thru wed (at least), so shoudl,ahve good updates as things progress.
 
Thank you all, You have no idea what your just thinking of him means to us right now. It is just VERY difficult for us all right now. Keep praying 
 
Will update ASAP, Randy 

Hey Randy:

As I have said countless times in the past months, Something I learned a long time ago in a small strange and eztremely beautiful country called Vietnam.....

DON'T SWEAT IT BRO... I'VE GOT YOUR BACK!!!!!

Indy