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

[Cinder & Smoke]

Sammy & the Easter Bunny - March 31, 2006




Saturday, May 20, 2006 at 06:15 AM EDT

Sam's scope was yesterday (a look at the old trach area/throat),
and the scarring is minimal; it hasn't closed completely, though,
so the ENT doc tried to help that along w/a cauterizing technique,
to encourage the area to heal over again.
But if it's not closed within a couple weeks, Sam will have to have surgery to close it. It's not a major deal, but she'd have to be in the hospital for a couple days, so we'll hope it closes.

She saw her kidney doc afterward, and she was pretty crabby (we'd been at the hospital since 6 a.m.), so he made it a brief visit, just adjusting a med after seeing her lab results.

Her hand has healed nicely, and Shriner's sent her 3 new pairs of gloves,
w/lace sewn on the edges, adding a feminine touch to her pressure suit.
Sam was pleased. She's using the hand normally again.

She's also making a little progress w/the legs; she doesn't complain as much w/them on, and is taking a few steps w/her walker. She wears them more at school now as well. We're really hoping to see a lot of progress this summer.

Thanks,
Jessica

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All Systems *GO*!

Your Fan Club is here to *Cheer* you on for a Fun Summer, Sammy.

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[Maya & Inka's mommy]

Aw, what a sweet and very brave little girl she is! It is great to see how much progress she is making!!

[Barbara]

In the NY Times they had an article about ballet classes for little girls in similar situations. I just had to think of it because looking at your face dear Sammy we can see that there lives a star in you

[Cinder & Smoke]

Tuesday, June 06, 2006 at 07:39 AM EDT

Nothing major to report, which certainly isn't a bad thing!
Sam's throat looks like it's closing this time, but we've been fooled before,
so it's still sort of a wait-and-see.

We're still moving right along with the legs, and she wears them a lot more;
she's a bit restricted in them, though, so they limit her activity, which is frustrating.
There's definitely been progress, however, so we're happy with that.

She's also made a lot of progress w/toilet training, and
uses her potty seat very regularly, letting us know when she needs to use it,
so that's a big step for her as well.

We don't return to Children's until the end of the month, and
then to Lexington the beginning of July;
Sam will see her eye doc this Saturday, and hopefully will get a good report.

I uploaded some more pics for your viewing enjoyment;
thanks for continued prayers, and enjoy the summer!

Jessica

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"Lookin Good", Kiddo!!

[Barbara]

Hey Sammy- it is good to see your smiling and beaming face! What a pretty girl you are! And you learn so many things- like using the potty seat!
That makes you a really big girl

[gini]

Oh Sammy, you have so many Aunts here that just love you to bits.

We are all so proud of the progress that you are making. You are using the potty seat now? Now that IS a BIG girl for sure.

I loved your picture - your beaming spirit just shines right through to all of us.
What an inspiration you are - how could any of us ever complain about one thing in our lives after all we have watched you go through?

BIG HUGS TO YOU!

[Cinder & Smoke]

Happy 4th!!!




July 02, 2006 at 03:54 PM EDTSam's doing well, and has her first pair of glasses now.
She's pretty good about wearing them some of the time,
but likes to take them off a lot, and wear them upside down.

Her check-up at Children's last Friday was fine, and her labs looked good;
we return to kidney clinic Sept. 1.

This Friday we head to Lexington, and discuss the legs.
Despite Sam's willingness to have them on more, they really restrict her,
and the straps aren't working out, as we have a lot of difficulty keeping them on properly -- I will be discussing all of this w/them at clinic.

Her old trach site appears to have closed completely,
so unless it somehow ruptures in the future, we won't be heading back
to the ENT doc; we're glad that surgery has been avoided.

Otherwise, Sam is feeling great, and talking up a storm.
She's really enjoying her summer.
There are some new pics in the gallery.

Hope everyone enjoys the holiday!

Thanks,
Jessica

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And a Hap, HAPP, * H A P P I E * 4th of July to you, Sammy!!

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