Great News! About the tube tho...sounds like the bear wants it gone as much as ya'll do!!

Doin the Happy Dance in my office! Great news Becca.

Becca, you poor thing you, how do you put up with a child that stubborn and that dog gone CUTE?!

Those pictures are soooo adorable! I love the little pool pic's. I am glad to hear about the labs coming back good, sounds like it's getting better for you and yours!!!

Wonderful, wonderful news!

My little pony picture is the best!!! I'm grinning ear to ear and doin the happy dance with deppfan long into the night. Will keep on praying for continued progress for the bear and her parents too.

What wonderful news and again, what beautiful little girl you have. Thanks for the update and the pictures, the pool pictures make me want to join her!!

Great pictures Becca. She is a doll. She just makes you want to give her a hug.

Love those big eyes! She is just adorable!

Fever of 102.5 yesterday (already back to normal today)...home nurse came out to take blood, but we haven't gotten results yet. grrr....

It must be so frustrating, like living on a rollercoaster with so many ups and downs. Hopefully this is just one of those small dips

OK here's an update.
We're going back to the hospital Wednesday at 7pm. Little miss Natalie's hemoglobin dropped again. So we need another blood transfusion. Then on Thursday we will pull the PTC (bili) tube in her tummy (WOOHOO) and do a CT scan of her lymph nodes. (She needs the transfusion before she can be sedated for the CT scan). Then we're hoping to come home Thursday.

May God be the pilot on your roller coaster ride!

PS: You mean she hasn't pulled her tube on her own again yet?

Godspeed.

LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS
LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS
LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS
LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS

Lots of BOL friends are with you

Happy 4th of July to the entire Bear Clan! Hope all went well and you're back home watching the fireworks.

Hugs & prayers...bjp

They're home

There's an update on the Website

Hey, PL your link isn't working:

Thursday, June 30, 2005 09:06 PM CDT

"You take the good, you take the bad..." I've got the "The Facts of Life" theme song running through my head right now.

The good:
*Natalie had a blood transfusion last night which slightly bumped up her hemoglobin. This morning she then got her PTC line pulled (WOOHOO!!!) and had a CT scan. And we were actually able to coordinate the IR team with the CT team and only needed to sedate for the CT scan.

*The CT scan showed mixed results. Some of the lymph nodes appear to be smaller (that's what we want), but some of them look the same or a hair larger - further analysis needed. Larger is not good and can mean that the PTLD condition is progressing badly. We were told to remember that it takes time (perhaps a month even) for these things to start to shrink back to their normal size, and we should still have hope.

*And we're home now, so that's always a good thing.

NOTE: For any of you liver parents that frequent 6 west at Children's - ask for room 684!!! It's the only room on the floor with a SHOWER!!! And of course we only stayed for one night.

The bad:
*Bile is leaking out of the hole where the tube was in her tummy. When we got home a few hours ago, Natalie (as usual) pulled the dressing - in this case steri-strips and liquid-stitches - off.

*We still don't know for certain what is making her hemoglobin act like a roller-coaster, so we'll probably be back for a transfusion in the near future again.

Quote:

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Hey, PL your link isn't working:

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Duh! Helps to add the link

So glad you get to be home for the holiday weekend. I hope you do something relaxing for all. Thinking of you and yours!!!

1st things, 1st...The red cross is in a full emergency for blood. Here is the website where you can schedule an appt: Please give blood or For info in your area.
Natalie has had at least 11 transfusions (we've lost count, honestly) please give a little of yourselves.

OK now to the fun stuff.
Phew...what a whirlwind of a weekend!!!!

Our friends from "up-north" (the creators of our AWESOME website) drove 5.5 hours each way for a weekend visit. And my parents graciously offered to let all of us use their pool - well everyone but Natalie (I'll get to that).

On Sunday the home nurse came out to take labs (late...argh!). Natalie was in a great mood - that is until I called Children's. Her bili tube site was still leaking - hence no swimming in the pool - it needs to heal from the inside-out but they told me to try putting an ace bandage around her tummy to apply pressure. I guess I applied too much pressure, because Natalie threw up on me! The rest of Sunday was spent playing and re-dressing the ever leaking wound. Then it stopped. Sunday afternoon I changed the dressing with my mom and a nurse friend and that did the trick, no leaking since - WOOHOO!!!

Natalie LOVED the fireworks (as long as she was sitting on her daddy's shoulders) last night.

In medical news:
The labs from Sunday look terrific!! Bili is steady, AST and ALT are normal, GGT is up a bit...and drum-roll please...hemoglobin is actually up to 10 !!!!!!!!!!!! Thanks so much for the prayers - they are working.

I was just considering donating blood tonight. I think I definitely will now!

Great news! I'll continue my prayers!

Up until I went on Methotrexate and Remicade, I gave blood regularly. Now they won't let me

What awesome news! Thanks for the update!