Wow...What a great job you and your Mom-in-law did on the Bears room, or should I say Princess Bear? I LOVE it and am sure she does too. Did you free paint the scene at the head of her bed?

So then, correct me if I am wrong, but, pink ribbons are for breast cancer awareness, yellow ribbons are for the soldiers, and green ribbons are for organ donation?

You are not wrong Nanwa. This link has more ribbon meanings.

And thanks anon for the comments on the bedroom. My mom was the official painter, the rest was me. (I really really hate to paint!!!)

What a pretty room for a pretty little girl. I she thinking of becoming a mechanic?

Oh my goodness! The room is beautiful. Absolutely beautiful! I cried while reading your latest journal entry. What a touching photo of Natalie placing flowers on your sisters grave marker. God bless you and your family! You are in my prayers.

Lady I agree, even though you warned me, I still cried.

Becca, you should write a book. If your story isn't inspirational, I don't know what is.

What's the website? I wanna see, I wanna see...

Mom of PN - So precious, so precious! Your thread here is such a joy. Your child a doll. Her life a miracle. A lot of stress, but you are so fortunate and blessed. Thanks for sharing the sweet pictures.

MTnFull and everyone else,
Thank you for your kind words. Back when this thread started I could never have imagined what a world of difference the support of other bankers would make.

I can honestly say that I've never met some of my greatest friends!!!

Through the powers of BOL we've received cards and letters, we've received care packages, fantastic friends, a gifted person to create a beautiful webpage, our spirits have been lifted and our hearts filled by all of you my BOL friends.

Oh yeah, and because of the generosity of my friends at BOL this weekend I'm going to eat at a resturant in my area called - PARAGON .

I thank you all for all that you have done for my family and if you'll still read them, I'll continue to post updates about my transplant kid !

Oh pleeeeze Becca, keep us informed. God bless ya'll.

Heck, I added your web site to my favorites. I can't wait until the day you write about how the Bear is completely in the clear and the three of you have nothing but the ordinary life events to write about.

Yeah, you really have to keep posting updates about the Princess Bear -- it's on my favorites at home. I want to see the pictures when the Bear goes tripping off to kindergarten and starts her trek to med school!

We had some really good news yesterday – we don’t have to go back to the hospital for a clinic visit for 2 whole weeks. I guess it’s all relative. What is good news to us may not be to someone else.

Yesterday, after our hospital visit, we caught up with another liver transplant kid (he was transplanted at the same time as Natalie), but he has CF as the underlying cause of his previous liver’s failure. Anyway, they asked how the bear was and we said, “GREAT!” But being the observant ones, they asked why Natalie had a PICC line if things were great.

To which I said something like, well after transplant she had 3, or 4, rejection episodes. So we switched her to a stronger immunosuppressant. But then she developed PTLD (early lymphoma) and had to have a biopsy of some lymph nodes to determine if chemo was needed. It wasn’t. Then Natalie started having blood issues – her body was attacking her own red blood cells while at the same time her bone marrow was suppressed so she wasn’t creating enough red blood cells anyway. So she got blood transfusions every few days. Then they noticed a narrowing in her portal vein and we did an angioplasty of it to fix it. Then her liver numbers went up and it was determined that one of her bile ducts had significant narrowing. So we did a PTC (Percutanious Transhepatic Cholangiogram) to insert a tube in through her tummy, through the bile duct and into the bowel.

But it seems like right now things have settled down – she hasn’t needed a transfusion in weeks, liver numbers are improved, we’re at home and not in the hospital – so I say she’s GREAT! My friend and I hugged and said our favorite line, “We love seeing you, but lets hope we don’t get to for a while,” and we left for home .

Natalie also got to hang out with some other "liver kids" while at her checkup - there is more on her webpage on that.

That's wonderful news Mom. Thanks for sharing.

Becca, that is great news! (Although, I guess we can't hook up in Chicago... oh well, it is better to have it this way!) Yay, Natalie!!!!

Sounds like things are going GREAT indeed!!

Funny that you posted this Mom...I was just on the website this morning catching up on the latest entries into your journal. A remarkable child, and an even more remarkable set of parents. You are in my thoughts daily.

Becca
So glad to hear that all is going well with Natalie. I continue to check for updates daily and have kept all of you in my prayers. You have educated me in regards to transplants - helping me to understand what a little boy in our Sunday School class has gone through over the past 3 years. He received a heart transplant when he was just days old and has had good days and very bad days as well. After keeping up with Natalie's progress and setbacks - I now understand what this family has endured as well as the lingo that they use in the prayer partner updates. Thanks for sharing your beautiful daughter with all of us at BOL and continued prayers coming from PA.

You don't have to go back for two weeks! WOW...that must be such a feedom for you. Enjoy your time off from doctors and the hospital. We continue to pray that Natalie gets better and better

Congrats to you and your family. You enjoy your down time from the hospital visits.

Great news Becca, glad to hear it!