Nannie home! Yay!!!

Will keep you in my prayers, as well!

What a roller coaster of a year it has been. Thanks to all of you for praying us through it!!!

I have posted pictures of the livers on the bear's page. You are welcome to take a look, if it won't bother you.

Happy Anniversary!

Happy Anniversary here to! I had tears in my eyes as I read your account of last year on Natalie's website. What a story! What a way to glorify God and all He can do. "The Lord is good, a refuge in times of trouble. He cares for those who trust in Him." Nahum 1:7 You have definitely been an inspiration to many.

Happy Anniversary to my favorite little Bear. And to one of my personal hero's ... Mom.

To answer your question on the website ... I didn't get a lot done that day at work, but spent an enormous amount of time in prayer. Towards the end it was desperate prayer because news was hard to come by, but I remember the tremendous sense of relief when an update to the Caringbridge page finally came.

Wow Becca-

I can't believe the difference in the livers (I looked at your pictures). One of my friends passed away this year and was an organ donor. He supplied a liver, 2 kidneys, 2 lungs, and a heart!

Happy Anniversary

Thanks BC,
And God Bless the family of your friend that was able to make such an amazing decision (to save the lives of 6 strangers) at such a terrible time of grief.

This is one of those times I really hate my breast cancer history cause I am not allowed to donate any of my organs!!! I'm sad to read the latest struggle but glad your home and hopefully your little one is getting better. Prayers coming your way, as always.

I am essentially copying and pasting from our webpage, but wanted to give an update for all of you that have been gracious with your prayers over the past year...

Why is it we always end up having 3 options?
So we had our clinic visit in Chicago yesterday. We went straight to the lab for a blood draw ...and while at the lab, the phone rang. It was our nurse Joan, Dr. Superina (our surgeon) had found a few minutes to meet with us...so we sprinted upstairs. Our discussion went like this. He wants a better look at what is going on inside before making a decision, so we have scheduled an appointment in a month for a squirt of the PTC tube (with dye) in IR.

As a reminder - The site where Natalie's new liver's main bile duct is connected to the small intestine is becoming "elastic." (While it sounds like it would be a good thing, it's not) As it continues to narrow the "sludge" within the bile (everyone has this - but Natalie has more we think do to possible damage from the hepatic artery clotting after transplant) is clogging up everything and making her very very sick. It needs to be fixed with surgery.)

From there, there are 3 options we may have:

1. Surgery to correct the narrowing, if the problem is actually with the connection between the duct and the intestine.
2. Leave the tube in for another 6 months.
3. Retransplant - This one is causing me stomach pains. But the reason is that the good doctor has a theory; there may be lasting damage to the bile duct other than just at the connection between the duct and the intestine. This damage may be from when her hepatic artery clotted (2 days after transplant) and that surgery may not help. See the liver was not getting blood for a period of time, even if brief, and typically a repair of the hepatic artery is not successful. (That is why she was listed Status 1, after the transplant).

So for the next month, we will be hospital free and loving every minute of it.

Natalie's labs look good. And the EBV level is holding steady.

I wrote more about our little trip to the Shedd Aquarium at our webpage...

As always, your family is in my thoughts and prayers.

I keep up with you guys on your website and pray for you all daily.

Prayers still coming from Texas for the Bear and all involved.

And prayers are still coming from Oklahoma.

Thanks for the update.

More prayers from Texas.

Prayers, as always from the western suburbs of Chicago. I wish I could just fix it all for you, no doctors needed.

Praying and many hugs.

Prayers continue from here!

Should we put you in for a role in Miracle Workers? They don't build you a house, they just fix you. (Well, fix Natalie)

You are still an inspiration.

Thanks BF et al.,
Her surgeons and their hands working with the hands of God are the only miracle workers we need...

we keep praying for you folks. We know you will be guided to the "right" decision for Natalie.

Sorry...for this but I am just going to copy and paste from our webpage:

I don't want to post...
Have you ever not wanted to communicate happy news for fear of somehow "jinxing" it - and then causing it to not be happy news anymore. That's where I am right now. I want to shout from the mountain tops how great Natalie's labs are. I really do want to tell you that that despite the PTC drain still being in, or because of it, she is doing awesome. Really, I want to tell you. It's like jumping in a pool that you know will be cold. You know that you will acclimate to it eventually, and that everything will be fine, and the water looks gorgeous...

Here goes...

Lab results are in.
We started weaning prednisolone about 2 weeks ago, but I haven't really talked about it much since then in case it didn't work. I hate getting my own hopes up, let alone the hope of perfect strangers and web page readers.

And so far so good. We started it like this: 0.5ml on the first day (half of a normal dose), then 1.0 ml the next day, then 0.5 ml the next, then 1.0 ml the next day...well you get the point, for a week. We were told if her labs were good, we could go to prednisolone every other day. Pred. is not the easiest drug to wean, so many kids have problems, I've been so nervous.

Total Bili - 1.0 {1.1}
Conj bili - 0.2 {0.3}
AST - 35 {30}
ALT - 30 {37}
GGT - 44 (yeah, I'm crying...this is so good for her) {69}
Alk Phos - 267 {270}
Hemoglobin - 12.1 (holy crap, it's holding steady!) {13}

Back in January, she had some pretty good labs - those are in { } and these are even better. Then in February all he!! broke lose and bile got blocked up inside of her, and her bili shot up to 12. The current labs are the work of the PTC drain which I loath. I guess it's doing miraculous things.

So thanks for checking in on us. I promise to get the Easter pictures up from this past weekend. (They are there on the webpage now!)

What wonderful news, MOPNB!! Here's praying that the trend continues.. Stay Strong.

Go Bear!!!

MOPNB, get used to the water.

prayers and ((hugs))

Thanks for the wonderful update. I loved all the new pictures too!