Any news?

This is Saturday's post from her website - be sure to go to her webpage & check out the new pictures - she's sure a cutie!!


Natalie's webpage


Natalie is turning fearless on me. I guess that this is a good thing, considering how timid she's been. Keeping in mind that she just had a liver transplant 7 short weeks ago, I guess it's amazing that she tried climbing in the fridge today! I had the door opened while arranging last nights grocery items and she tried climbing up the shelves!!!

Biliary drain tube saga:
We have had to replace the tube 4 times now in the last 3 weeks. It's getting a little frustrating. Grrr....
And we had to make the drive (2 hours each way) back to Children's 4 times this week alone.

Wed. - Replace tube. Wed. night tube leaking already.

Thursday - Clinic visit day. While she is no longer on the growth charts (she fell off - but since she was in the 1st percentile we saw it coming) her doctors are pleased with her liver. Her liver numbers look good again. Bili is normal, GGT is good - but with the bile tube leaking (thinking prograf leaked out with some bile), her prograf is too low so we need to get that fixed...
IR can't fit us in, so new tube is scheduled to be placed Friday.

Friday - Drive back to Chicago. Have larger bile tube placed. Natalie does GREAT with sedation and we are outa' there by 11:30am.

Today - Go back to CMH. Natalie's prograf level (immunosuppresant) was too low Thursday. Dose was increased Thursday and we had to go in for a blood draw today.

This child is just remarkable. Glad she keeps improving.

I saw the new pictures -- very adorable!! She looks like she is getting around pretty well. The prayers are continuing.

Becca,
Any update on the status of Natalie's rejection of the liver? Is the danger of that passed?

There will always be that danger of rejection. Which is why she'll be on Prograf for the rest of her life. Prograf is a potent anti-rejection medication. Her liver numbers continue to be stable. These usually indicate that there is a problem (i.e., rejection, or the bile duct problem that she had most recently). Rejection can then be diagnosed or ruled out with a biopsy.

But so far so good...knocking on wood.

Glad to hear it, Becca!

That is such great news. She appears to be a real trooper. You are truly blessed. There is much to be said for the power of prayer.

We'll hope for a nice quiet weekend for our little Bear and her family

Watching a child's eyes light up with excitement is one of the best sights in the world,especially after all that little bear has been through. Enjoy your new swingset!

What an adorable happy little girl. I wish I could help with the fence!

Just got back from Atlanta and ABA grad school to this wonderful news and the picture of Natalie. YEA!!!! What a beautiful little girl you have.

She is absolutely adorable! I'm so glad she is doing better.

Hey! How's our girl doing? How'd the last trip or two to Chi town go? You'll have to wean us off the daily updates a bit more slowly!

Virtual hugs and continued prayers.

I talked to Becca last night and her appointment yesterday went well - YEAH!! She got her PICC line out

Great news!

I am glad to hear the little bear is doing well!

OK here's an update. Tomorrow I'm going back to work...I'm a bit nervous though. G-pa and G-ma are going to watch the bear for the day. We'll see how everything goes. We've tried to get all her meds scheduled for 7:30 am and 7:30 pm. (But she's still got a few that they'll have to give her at noon.)

She is doing fantastic!!! Took her first bath in weeks today (we've been doing sponge baths due to the lines she had in). Oh, to see her splashing around, making a mess in the bathroom made me cry tears of joy (you have to understand what a neat-freak I used to be) but her happiness is WAY more important than some water on the floor!!!! And still no walking, but we're getting close!

VENT warning - the neat freak comment above reminded me of something yesterday. We were in a parking lot and a young "dad" was talking on a cell phone while his significant other was holding a toddler about Natalie's age. The toddler was talking (da, da, da, da, da) to the dad. The "father" looks at the kid and YELLS at the mom, "Can you shut him up? I'm on the phone!" Jason and I exchange looks and Jason hugs Natalie a bit tighter and says to me, "I guess some people just don't have their priorities in order." BTW - he said this in such a way that the "dad" could hear him. And since Jason is 6'3" and 250lbs and the other guy wasn't measuring up he just got in his car and left in a huff. Grrr....some people...don't appreciate the gifts they have in their kids.

Becca, what excellent news!!

In response to your VENT: There is an obvious difference between a "Dad" and a "Father". It's good to be both, but kids that age need there Dads!! There was a commercial (don't know by whom) where a man was making stupid faces and was wearing this headband with antennas sticking out, just being goofy. Anyway, it related that he was simply being a Dad. That's what it's all about.

I just got goosebumps and tears welling up all at the same time! Oh, Becca, what wonderful news. Thank you for sharing the bath story. Your little bear reminds us to cherish the little things. I'm so happy she's doing better.

Don't fret too much about the g-parents. Speaking as a charter member (with one granddaughter who's allergic to a bunch of stuff)we're a sturdy lot with a bit of experience under our belt. We follow directions to the letter and we won't let you down!

You could all use a bit of normalacy in your lives again. Go to work. Enjoy knowing your little one is finally well enough to be left in loving hands other than your's. And bring ice cream home for dessert!