Johanna (Cataholic) & Sister Jessica continue to Request Prayers for young Samantha

[Cinder & Smoke]

Christmas Day, December 25, 2005 at 06:26 PM EST


Merry Christmas, everyone. Sam slept late again,
but woke up in time for Grandma's visit,
and Mom and Dad had a nice Christmas dinner. S

Sam's a little quieter today, but still alert, and
smiling away at her Barney videos.
She opened a few gifts today, but still has gifts waiting at home for her
to enjoy when she's fully recovered.

They put the feeding tube back in today, and will start the feeds later;
we really couldn't wait any longer, and the nutrition is critical to her recovery.
Hopefully this will be short-term, and that once whatever throat issue
she has resolves, she'll eat again.

She still drools during the day, but we've noticed that when she's sleeping,
she's swallowing. It's possible there's a psychological component at work here,
and once she's home and more relaxed in her normal environment,
she can get back to "normal" things.

The immunologist stopped by, but he said he probably won't have more
results until mid-week; he also let us know he'll be consulting
w/the genetics dept. re: a chromosome study.

It's possible we'll move back to the floor tomorrow.

Hope everyone's holiday was happy;
thanks for all the Christmas wishes for Sam!

Jessica

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Thanks God, for sending Santy Claws to Sammy's room!


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[Barbara]

Hey Sammy, I am so glad you enjoyed some of these gifts Hope it gets better, now as they get a little food into you.

[Cinder & Smoke]

Monday, December 26, 2005 at 01:37 PM EST


We're back in A6 South.
Sam is tolerating her feeds well, which is good;
this will help get the belly back in gear.

Her BP is still running a bit high at times, so she's getting some meds
for that -- it's likely kidney-related.

Her mental status continues to improve daily.

Her antibiotics are finished, so the central line will be coming out soon;
right now they're still using it for some meds, so she doesn't have to
take them all orally, which would probably make her vomit.

And yes, Chantelle, tell Quinlan that Santa is amazingly flexible --
Sam has gifts waiting at home, plus received some here,
including a couple Barbie dolls, a big Pooh bear, miniature horses,
Weebles, cars, books, an outfit, and Lego Mega blocks.

Let's hope Sam has a short, uneventful stay in Building A,
so we can go home.

Thanks,

Jessica
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Sounds like Santa brough a sleigh-full to Sammy's room!!

Prayers that the stay in A6 is short and gets you ready for
the Trip HOME!

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[Cinder & Smoke]

Saturday, December 27, 2005 at 07:28 PM EST


Sam continues on that road to improvement;
she's much more alert and responsive now,
though still not quite back to her usual SuperSam self.

She greeted me w/a "Hi, Mom," when she woke up today at the crack of noon.
(I'm not sure if she's now calling me "mom,"
or if she's only doing half of "mama" during her recovery phase!)

No big news on the immunology front;
the complement part he was looking at checked out normal,
and other results aren't in yet, due to the holidays.

The genetics dept. is now in the game
(will there be a dept. we don't see in Children's?? )
and will be sending some bloodwork out of state for more tests --
there's a doc in Colorado, I think, who's going to take a look.
(They will be checking to make sure this isn't a certain subtype
of her platelet defect that's linked to immune system problems.
The doc at the NIH doesn't think it is. Anyway ...)

Her central line should come out tomorrow morning,
after everyone's had a chance to draw their labs.
She's tolerating the feeds really well, so she will go home on the tube
for a while, until we get her eating again.
She's drinking a little by cup.

She's allowed out of her room now, so we brought her stroller up,
and take her downstairs a lot ... nothing really exciting down there,
but it sure beats this room!

We're really hoping to be out of here before '06,
so think some happy new year thoughts for us.

Thanks,

Jessica

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*Home* for New Year's sounds good ...
We'll ask God to try to schedule that for Sammy!

[slick]

If there is one thread I check everyday, it's this one. Little Sammy, at Midnight Mass I said a special prayer for you and I heard God whisper that everything is going to be OK. What a wonderful way to spend New Year's Eve....home with your loved ones. Oh dear, here comes LES again....

Sending big {{{hugs}}} to Johanna, Jessica and the rest of the family.

[Barbara]

Ok, Sammy now we try to concentrate on New Year's eve! One step after another- and you come a long way

[RobiLee]

I think of Sammy everyday and read the postings daily.

Sammy, you are always in my thoughts and prayers and I'm hoping that you will be home for the New Year.

Hugs!