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

[Cataholic]

Sam is the guest of honor at a Benefit on Sunday! Phred- drive on down! It is in Felicity...I imagine that is about a 5 hour drive for you....LOL

[Cinder & Smoke]

Originally posted by Cataholic

Sam is the guest of honor at a Benefit on Sunday!

I had forgotten about the Benifit
Bad me!

You're about right on the 5 hours ... it's a bit far.

Hopefully there will be a BIG turnout of the more "local" folks.

[Cinder & Smoke]

Monday, August 29, 2005 at 12:54 PM EDT

Sam had a wonderful weekend, with last night being the highlight.

We attended a benefit for Sam, organized by many caring people.

Over 400 were in attendance, enjoying a nice dinner, concert and silent auction. Words can't express how touched we were by this event, and how moved we are by the generosity of so many --some of whom had never met Sam until last night.

Sam enjoyed it as well, having had a nice nap that day;
she was quite charming (in my totally unbiased opinion) and
had lots of fun. She was exhausted when we got home!

It was a very uplifting experience for us;
it helped to remind us how blessed we are,
which can be hard to remember when something devastating happens.

It was so nice to see everyone!

Thanks,
Jessica

[Barbara]

I am so glad that not only Sam was a charming hostess but that you as well profited a little from the warm atmosphere. Of course Sammy comes first but so many people also know what her parents do for her

[Albea]

It's so wonderful to read that the news about Sammy keep getting better and better every day.
Of course she was a charming hostess, she's getting back to being herself!
Even if the road ahead is a long one, with so many people praying for her and her family she'll make a full recovery. Best wishes...

[popcornbird]

So wonderful to hear the benefit went well. Samantha is such a precious little girl. How could this sweet soul NOT touch anyone's heart? How wonderful to read her updates, and to know she's getting better and better, day by day.

[Cinder & Smoke]

Friday, September 02, 2005 at 07:27 PM EDT

Sam had a pretty good week;
she continues to enjoy being outdoors, taking walks, running errands with mom and dad, and playing with all her toys and books at home--of course, she enjoys a daily dose of "wiggles" as well. She sings along to many of the songs.

She has managed to eat some crackers and peaches this week,
and she is now on her feeds for 12 hours, then off for 12,
allowing for a few more hours to build an appetite. The vomiting has improved a bit, now that she's on less meds.

PT was fine; Sam was more cooperative this week,
and did the stretches she needs to do. Soon she'll rotate PT and OT, w/one per week.

Her kidney labs are still stable, even w/less medication, so that's good.

She seems to be feeling pretty well, and looks great.
I will try to have new photos posted soon.

One new development is that Sam now requests back rubs by calling out "back"--she likes us to massage her back w/eucerin cream, which she gets daily for her skin. What's funny is that she hated it when we put her cream on in the hospital, and she still doesn't like it unless you're doing her back. She often calls out for a back rub at 2 or 3 a.m.; she knows one of us will wake up!
It's nice to have something that will comfort her; it seems like she has phantom pains quite a bit, and there's no easy fix for that.

I'll close this post by saying that we bought the cutest Halloween costume for Sam today--a fuzzy little chicken suit! Yes, it's early, but it's so nice to have things like that to look forward to!

Enjoy the long weekend!

Jessica

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Chicken Suit!??

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[DJFyrewolf36]

I am in awe of this miricle!! Way to go Sammy!!

[Barbara]

I am so glad to hear these kidneys work ok even with less medication.

Filou says he would like to share his renal food but I am not sure Sammy would want it

And we are even more happy to hear that there is fun in Sammy's life.

[Cinder & Smoke]

Friday, September 09, 2005 at 08:46 PM EDT

Sam continues to do well;
I'm really going to try to get new pics up soon!

Her kidney labs continue to be stable, so we won't go back down to Children's for 2 weeks, when we'll see the kidney docs again, as well as the plastic surgeon. If she continues to not need dialysis at this time, they'll remove the catheter early next month, when she also has a scope scheduled by ENT to have a final look at the trach site, to make sure everything healed well. (That way, she's only under anesthesia once; they try to double up on necessary procedures when they can, so as to avoid multiple surgeries.)

We're hoping her PICC line can come out in the next month or so, too, and then we'll just have that pesky feeding tube. She's lost a little weight since they cut the feeds down to 12 hours; she's eating a little more, but not near enough. They're not overly concerned, as she's still a healthy weight -- those of you that have seen her can vouch for that!! -- but of course, we don't want her to continue losing. They've suggested a shake, kind of like Ensure, but low protein, for her kidneys, but we're having trouble tracking down the one they suggested -- our pharmacist couldn't find it in the computer, so they'll have to give us another name. We can also up the feeds again, but it would be great to have her take something by mouth. She drinks a lot of water, but, alas, no calories in that. A lot of liquids she would drink -- OJ, milk -- she can't have, due to her kidney diet. So the eating thing is still a challenge, but each day she's more willing to try a little something, so we'll keep plugging away!

She continues to laugh and dance a lot, and loves to sing along with her new favorite -- Bear in the Big Blue House. Yes, the Australian guys finally have some serious competition. She's also counting a lot, and is pretty good at 1-5, and is learning some colors, too; she amazes us every day! She visited the library this week, and her friends at Precious Resources, too; it's nice for her to see people other than Mom & Dad, though Dad will be quick to tell you he's the fun one! Mom makes her do her stretches, and she hates it, but they must be done. We meet w/a rehab doc next month, at Children's, who specializes in limb deficiencies; we're hoping to begin early prosthetics training sometime this fall.

Sam's sleeping away right now, gearing up for the weekend;
hope everyone has a nice one!

Thanks,
Jessica

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Good to hear Sammy continues to Make Progress!!

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[Barbara]

Thank you Phred, I missed hearing from Sammy.

I am so glad she loves colours and the libraries. In my life, books is the number 1 thing to get me through bad times and you can't start early enough to learn what a world of wonders they contain.

[Pawsitive Thinking]

So glad to hear Sammy is still improving

[Cinder & Smoke]

Friday, September 16, 2005 at 08:42 PM EDT

Sam had a little virus this week, causing coughing and vomiting;
we ended up taking her down to Children's ER Monday night,
as I was afraid she might be getting dehydrated.
They ran a bunch of tests -- but everything came back okay -- and
gave her fluids for a couple hours, and she's been doing better since.

She saw her ped yesterday, and that went fine.
We'll go back to Children's a week from today, and
check in w/the kidney docs and w/plastics.

She continues to be her cute little self,
and it seems like she's learning more every day.
We were able to get out and about later in the week, to pick up more books and movies from the library--she's into Barney, now, too--and visit her friends at Precious Resources.

We're hoping to enjoy nice weather this weekend, and
then I return to work Monday,
so that will be another transition for us.

Thanks for keeping Sam in your thoughts.
Jessica

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Glad the *bug* went away ...
Here's Hoping for a Sunny Weekend!

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[popcornbird]

Awww. Sorry to hear you had a virus little Sammy! Hopefully you are feeling good now, and having a wonderful weekend!

[Cinder & Smoke]

Hey "Auntie" Johanna ~

Didn't SOMEbody take some *snappies* at the Sammy Benefit?

Any chance you could find a few and POST em??