Sorry these are late - we've been a lil busy ...

Friday, July 22, 2005 at 04:45 PM EDT

And we're on the move again...
we have left ICU and are now on a regular medical floor,
where Sam will have her rehab. The powers that be have decided that she really needs close medical attention along w/rehab, so we should finish out our stay at Children's where we're at -- hopefully!!

Sam is still on the antibiotics, and the infectious disease folks will be following her case, making sure they get rid of the bugs; nephrology will also be watching her, but she's under the "primary" care of general pediatrics.

Still no need for dialysis today, so that's encouraging.
Sam has been awake all day--same thing yesterday--and very alert. She fights her midday nap w/all her might, and wiggles around and reaches out for me when she feels herself nodding off. I guess she figures she's spent enough time sleeping these past few months. She's had some of her therapies as well.

I'm sure this latest transition will be tiring for her,
but it could be the final leg of our Children's stay,
so we have our fingers crossed!

Thanks,
Jessica

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Tuesday, July 26, 2005 at 04:30 PM EDT

Sorry for the delay;
All is Well w/Sam, and she's pretty much settled into her new room.

I'd like it to be her last room here, but there's still talk about
moving her back to the rehab floor... who knows.

She still hasn't needed dialysis, so things are okay w/the kidneys right now.
They are doing further studies on them, so we'll know more soon.

The vomiting is still an issue, but it's happening a bit less. Sam is sitting up really well now, and can roll over and pull up into a sitting position on her own. She also likes to pull on her feeding tube, so we really have to watch her.

It's so nice to see her sitting up and playing w/her toys.
They are still weaning her off the meds, but on Saturday night, she experienced some withdrawal, likely from the anti-anxiety med she's been on, and she screamed so loud I could hear her, and I heard "mommy" for the first time in ages! I guess if Sam gets upset enough, she can talk over the trach. I was upset, too, and made sure the docs realized the taper was a bit too quick, and Sam got a small dose to ease her discomfort. She slept until noon on Sunday, after such a hard night. They are continuing to wean her, but keeping close watch for any signs of withdrawal; they have a protocol, but there is no exact science.

Sam's also been having fun playing in the sink, and engaging in one of her old favorite activities--washing her hands! We're seeing lots of smiles from her these days, and her personality is really coming through.

We're also working on reintroducing food & drink. They looked at her airway today, and said it's fine to start working toward removing the trach; apparently, all looks okay in that area, so hopefully we'll have Sam talking again really soon. It would be nice if she could lose the new dialysis catheter soon, too, but they will likely want to wait a few months, just in case she needs dialysis.

So, all in all, we're moving in the right direction.
I'll have some more pics posted soon.

Thanks,
Jessica

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Sitting up, Playing with toys, *Hollerin* for Mom -
sounds like the Lil Kid is back!

Prayers for Continued Progress!!

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