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

  1. #931
    Join Date
    Nov 2004
    Location
    Belgium, near Ghent
    Posts
    12,643
    Aw, what a sweet and very brave little girl she is! It is great to see how much progress she is making!!

  2. #932
    Join Date
    Apr 2002
    Location
    Munich
    Posts
    15,287
    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

  3. #933

    Sammy Tails & a *Snappie*

    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

    --------------------------------------------------------



    "Lookin Good", Kiddo!!

    /s/ Cinder, Smokey & Heidi

    R.I.P. ~ Boots, Bowser, Sherman, & Snoopy

  4. #934
    Join Date
    Apr 2002
    Location
    Munich
    Posts
    15,287
    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

  5. #935
    Join Date
    Oct 2000
    Location
    Los Angeles, CA USA
    Posts
    12,031
    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!

  6. #936

    Happy 4th of July !!!

    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

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

    --------------------------------------------------------------

  7. #937
    Join Date
    Jun 2006
    Location
    NE Pa.
    Posts
    3,190
    May peace reign and this baby be healed her parents calmed and life show its true joys this I ask of the quarters the seasons and the spirits that guide as it is below it shall be above so mote it be.

    consider all our altars lit and candles burned in their honor.

  8. #938
    Join Date
    Apr 2002
    Location
    Munich
    Posts
    15,287
    Sammy we hope you have all the fun at July 4th
    We are so happy that things are getting better with the trach site and that you don't have to go to the kidney clinic before September That's a good sign I think.

    And I am sure you'll manage these legs as well, sweetie.

  9. #939
    Join Date
    Dec 2002
    Location
    My life is God filtered :)
    Posts
    14,046
    I just want to bump this up. Any updates on this little miracle child??
    Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, champagne in one hand and strawberries in the other, body thoroughly used up, totally worn out, and screaming WOO HOO - What a Ride!
    --unknown

    Sometimes the most real things in the world are the things we can't see
    --Polar Express

    Until one has loved an animal, part of their soul remains unawakened.




  10. #940
    No news is hopefully Good News ...

    Mom Jessica hasn't posted an UppyDate since the July 02 message.

    Hope that All is Well and Sammy continues to make progress.

    /s/ Cinder, Smokey & Heidi

    R.I.P. ~ Boots, Bowser, Sherman, & Snoopy

  11. #941
    Join Date
    Dec 2002
    Location
    My life is God filtered :)
    Posts
    14,046
    Thanks Phred. I was just going over this thread and I have tears streaming down my face. My God Sammy, what an inspiration you are. Knowing what you have gone through gives me the strength to handle anything that's thrown at me.

    Much love to you little one.
    xoxoxoxoxoxo
    Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, champagne in one hand and strawberries in the other, body thoroughly used up, totally worn out, and screaming WOO HOO - What a Ride!
    --unknown

    Sometimes the most real things in the world are the things we can't see
    --Polar Express

    Until one has loved an animal, part of their soul remains unawakened.




  12. #942

    Look who *checked in* ~ HI, Sammy!!

    Sunday, August 13, 2006 at 10:17 PM EDT

    Where has the summer gone??!?
    Well, I guess the weather would indicate that it's still around,
    but I can't believe we're halfway through August.

    Sam was discharged the first time almost exactly 1 year ago today,
    and I'm amazed at the difference a year makes --
    and incredibly, eternally grateful.

    Okay, so we've been to Lexington twice since the last update,
    and I told them how the strap-on legs weren't really working out,
    so they removed the straps, and we've gone back to the original leg plan,
    with the liners and bolts, and they do stay on a lot better. Sam's still not thrilled with them, but we're not in any rush, so we'll let her adjust to them at her own pace. The liners fit very snugly, and squeeze the stumps a bit, so I think that's a little uncomfortable.

    I plan on starting her in PT again soon, and I've been told there's someone nearby who has experience w/prosthetics, so we'll work on it. We're still doing our daily stretches, but I want someone else to work on those exercises w/her too, at least weekly.

    We've applied for a home care waiver for her, and at this point she's been recommended, and we're waiting for state approval; this would mean she'd have secondary insurance (you can imagine that her primary insurance has taken quite a beating, and there are quite a few things that aren't covered, so this would really help her, as her needs are many, and she'll have these needs indefinitely. The only criteria for this waiver is medical need, and it's the only program available for her, so we're keeping our fingers crossed.)This waiver would allow for PT as long as she needed it, instead of maxing out after a certain amount of visits, as w/regular insurance.

    She saw the plastic surgeon this month, and -- tada! -- she's done
    w/the pressure garments! He said her skin looked really good,
    and he doesn't need to see her again for 6 months.

    We saw the immunology doc the same day, and he's going to be working in conjunction
    w/a doctor at the NIH (Nat'l Institute of Health, in Baltimore)
    who specializes in rare genetic disorders, such as Sam's HPS (her platelet defect),
    which caused her albinism; there are different types, and they will be working on
    discovering her subtype, as it might be the one that can cause immune problems. It can be a long process, but I'm glad we have a good team working on it. They will be examining her DNA, and possibly running some other tests at some point.

    For now, she is remaining on the daily dose of amoxicillin.
    She's finishing her TB exposure meds in a few days, so that will be one less medication.

    Sam had her first official dentist appt., too, and did really well;
    I had her practicing opening her mouth really wide for a week prior,
    and she was a champ. The dentist said everything looked normal;
    some staining from the antibiotics is there, but that's to be expected.

    Otherwise, she's doing well.
    She climbs on everything at home, is talking in sentences,
    is enjoying preschool, and eats and sleeps well.
    She's 3 and a half now, which is hard to believe.
    If you ask her where she's from, she yells, "China!!!"

    We see the kidney doc next month, but besides that, we're just trying to lay low and relax.
    Hope everyone's had a good summer.
    Check out some new pics in the gallery.

    Thanks,
    Jessica
    -----------------------------------------------

    WOWzer!!

    That's so much GOOD News all at once it's hard to digest!!

    THANKS, God!!

  13. #943
    Join Date
    Dec 2002
    Location
    My life is God filtered :)
    Posts
    14,046
    That's so much GOOD News all at once it's hard to digest!!
    You've got that right Phred. Thanks for posting the uppydate and I'm so glad thing are progressing. Way to go Sammy!!!

    Will have to find the link to the gallery. I could use some Sammy smiles right about now.
    Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, champagne in one hand and strawberries in the other, body thoroughly used up, totally worn out, and screaming WOO HOO - What a Ride!
    --unknown

    Sometimes the most real things in the world are the things we can't see
    --Polar Express

    Until one has loved an animal, part of their soul remains unawakened.




  14. #944
    Join Date
    Dec 2004
    Location
    Ban stupid people NOT dogs!!!
    Posts
    17,099
    wow! she looks SO much better! I am so glad she is doing better and continues to do better!!!
    Krista : Buster : Coonhound : Rudy : Airedale Terrier x : Dixie : Schnauzer/Terrier X : Miagi : Tabby : Tiger : Tabby/Bengal X : Angel : Russian Blue X

    Rocky, Jenny, & Ginger.. forever loved & always in my heart..

    I have been frosted!

  15. #945
    Join Date
    Mar 2002
    Location
    Santa Clara, CA
    Posts
    27,647
    I'm glad to hear that Sam's doing so well. This is wonderful news.
    Owned by Sky, Pearl, Ziggy Stardust, Alani, Blaze, Colby, Finnegan, and Summer.


    My Rainbow Bridge Babies:
    RB Pepper 3/17/97- 2/3/03 RIP Sweet Pepper
    RB Starr 3/22/05- 7/1/09 RIP Sweet Starr
    RB Sunny 8/25/00- 2/28/10 RIP Sweet Sunny
    RB Storm 1/11/96- 8/2/12 RIP Sweet Storm

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