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

[Maya & Inka's mommy]

What a miracle girl Sammy is!! It feels so good to see that little girl smiling and playing. She has gone through so much already... !

Where will she have to wear that pressure suit on? Body & arms??

[ramanth]

Yay Sammy! You are looking good girl! :D And I love your adorable smile and cute outfits. So happy to hear you are doing better day by day!

[anna_66]

Phred I've been keeping up with her progress through carepages and I missed the pictures:o Thanks so much for posting them! She's looking wonderful...and happy:D

[Cataholic]

Lut- Sam will wear a custom made pressure suit for at least 6 months, up to 2 years, and it will cover her arms, body and thighs. ;)

[Tubby & Peanut's Mom]

Lut- Sam will wear a custom made pressure suit for at least 6 months, up to 2 years, and it will cover her arms, body and thighs. ;)

Oh Sammy, you look so wonderful! I, too, am experiencing major LES while jumping up and down with joy at your progress. :D

Jo, I guess I missed something, but just what is this "pressure suit" for? It doesn't look like she has anything special on in any of the pics, so will it be something that she wears under her regular clothes? Also, what is the tube in her nose for? Just curious because it's in some pics and not others and more importantly, how in the world do you get such a youngster to not pull that out?!!? :eek: Sorry for all the questions and if I missed some of the explanations earlier in this thread....

[poofy]

Prayers for Baby and family.. :(

[Cataholic]

Debbie,
The pressure suit is to help with the integrity of the skin, having so many grafts, to help with the healing of the scars, to help with the legs, etc. She will wear it underneath her clothes.

As to the tube..well....some of the pictures were taken earlier, and some later. The tube was removed at some point, and all she has left of portals is the PICC line, which is on her arm. ;) That might come out next time around.

[poofy]

They are in myprayers.. :(

[Cinder & Smoke]

Wednesday, December 07, 2005 at 09:40 AM EST

Sam's visit to Shriner's went well;
she was measured for her pressure garments, which we will p/u on the 20th.
Her plastics doc says her skin looks pretty good, and she'll probably only have
to wear the suit for @6 months; the initial estimate was 6 mos-2 yrs, so we're pleased.

She's also on the surgery list for a tendon release procedure on the finger on her left hand, as scar tissue has tightened it to the point where it can't be extended.
All that will take place at the Cinti Shriner's, as well as any further skin issues; prosthetics & anything else orthopedic will be handled through the Lexington Shriner's--the Cinti folks are contacting them to make arrangements. They are willing to help Sam until she's 21, so we are very grateful.

Sam continues to do well and is really enjoying herself, and makes us laugh constantly.

She had her picture taken with Santa over the weekend, and she wasn't scared at all.
She also had pics taken at Sears, and I must say--with total objectivity--that the pics are very, very cute.
(It was rough going at first, though, as she thought it was a medical appt., and the photographer was wearing white! Also, "picture" to Sam means x-ray.)
When we got back home, she was all smiles, though, and kept saying, "picture taken. cheese!"

She's also singing "Jingle Bells",
in preparation for her Christmas program at preschool this Friday;
some of you have heard her already!

Thanks,
Jessica

-------------------------------------------------
*Pictures*

We want to see Sammy's Christmas Pictures!!
http://petoftheday.com/i/our_smilies/biggrin.gif
---------------------------------------------

[Pawsitive Thinking]

Bless her little heart - have a lovely Christmas sweet little Sammy xx

[Barbara]

We want pictures of Sammy with Santa! I am so full of admiration for this little girl. She has the heart of a lion- well surely of a very impressive cat :)

[Cataholic]

Sammy sings Jingles Bells like this....

Jingle bells, jingle bells, jingle all the way......HEY!

It is hysterical. You first press the phone really, really close to your ear to hear her saying the first part, then BLAM! The HEY sets you back a foot or two... :D

[wolflady]

Oh my gosh! She is just the most precious and amazing girl EVER!!!!! It's so nice to see her doing so well after enduring so much. It really makes me appreciate all of the things I have and take for granted every day. I too hope to see some of those Christmas pictures!

Continued prayers for you and your family, Jo. May you all have a fabulous holidays! :D

**hugs**

[popcornbird]

Sammy sings Jingles Bells like this....

Jingle bells, jingle bells, jingle all the way......HEY!

It is hysterical. You first press the phone really, really close to your ear to hear her saying the first part, then BLAM! The HEY sets you back a foot or two... :D

SO CUTE. I want to hear that!!! :D Sammy's progress makes me so happy. What a wonderful, sweet, miracle child!

[Cataholic]

99 December 10, 2005 at 07:32 PM EST

This is Johanna, posting on behalf of Jessica and Rob. Sadly, earlier this morning, Sam returned to the PICU. She seemed to have a cold/flu the last day or so, and was feverish this morning, about 830 am, EST. No matter how many blankets Rob put on Sam, she wouldn't stop shivering, and her upper extremeties and lips were blue. Jessica was already at work, and Rob called the paramedics. After some consult, Sam was air cared to Children's, where she remains now. Sam is stable, on a vent again (to give her all the assistance she needs to focus on other organs, she did not 'need' the vent for breathing purposes), has the fever and BP under control, and is medically sedated. Her urine output (always a concern with the kidney problems) remains good. The doctors think it is some sort of bacterial infection, but, probably not meningitis again. However, with Sam, everything is very precarious, medically speaking. The doctors will remove the older PICC line, and insert a new one in the groin. It is **possible** that the PICC line became infected. The majority of the tests/cultures won't be back until tomorrow or the next day. Sam is on antibiotics, to fight the infection, from whereever it is from.

Needless to say, Samantha needs lots and lots of prayers again, to fight the infection, return to her spunky self, and be home for Christmas! Keep Jessica and Rob close, too!

Johanna

[Cinder & Smoke]

Dear God ~

Please Help Dear Sammy bounce back from this setback.

We'll all Pray she's Home for Christmas.

<Amen>

[jenluckenbach]

What terribly distressing news.:(

Prayers for Samantha.

[Craftlady]

I just read the update. Will keep good thoughts and prayers for baby Sam.

[popcornbird]

Poor little Sammy. :( Feel better soon sweet child! Prayers that she is able to return home soon.

[rosethecopycat]

Come on miracle baby girl, keep amazing us all.

Prayers rising tonight.

[shais_mom]

This certainly puts my whining about my life in perspective.
Thoughts, prayers and lots of hugs and love sent to your family Jo, from the bottom of my heart.

[K9soul]

:( Samantha is in my prayers, as well as Jessica and Rob.

[kimlovescats]

I am so sorry to see that our Sammy has had this setback. :( Many prayers coming her way and for Jessica and Rob as well.

Kim

[captain]

Johanna,

So sorry to hear about Sammy ......... {{{{hugs}}}} and prayers coming your way.

[Uabassoon]

I'm so sorry to hear about Sammy. You will be in my thoughts.

[krazyaboutkatz]

I'm so sorry to hear this. :( Lots of prayers and positive thoughts are being sent Sammy's way.

[RobiLee]

Thinking and praying for you Sammy.

[Barbara]

Oh no!!!!! I am so sorry. Deep breath.
All my best thoughts for the Sammy girl.

[Cinder & Smoke]

Monday, December 12, 2005 at 04:17 PM EST

Thanks, everyone, for continued prayers and support
during this sudden and scary setback;
after nearly 4 months of constant and amazing improvement,
this has been a real blow,
but I'm happy to report that Sam is rallying back like the fighter she is.

http://petoftheday.com/i/our_smilies/smile.gif

She is stable, and they are beginning to wean her off the vent, and
will wean her off the sedatives as well.
It is quite possible that she will be awake by mid-week.

An initial concern was whether or not she had an immune system problem
that would lead to a second bout of septic shock in so short a time,
but nearly all the docs we've spoken to feel that the "hardware" (belly catheter
and esp. the PICC line) she came home with facilitated this infection,
and that in the absence of those, she likely would not have become ill again.

(Other facts against the immune system problem theory:
she survived a serious case of one of the worst pediatric infections, and
she remained healthy for the nearly 2 years she spent in a foreign orphanage.)

They still suggest a consult w/immunology, just to be safe.
The PICC has been removed, and the kidney team is going to come up with
another way to handle labs. Up to this point, they haven't needed dialysis;
we pray that this will continue.

She's a bit puffy, but that was inevitable, in light of the sepsis;
she is on a lasix drip to help pull liquids off and reduce swelling.
They will start running some nutrition through her line tonight,
and then we're on a wait-and-see.

They are hoping to extubate by Wednesday -- late tomorrow if we get really lucky.

She seems to be past the worst of it, and is working her way out --
there can't be a stronger little girl in all the world!!
I'll try to update each day --
please keep Sam in your prayers!!

Jessica

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

Whttp://petoftheday.com/i/our_smilies/smile.gifW ~ GOOD NEWS all the way!!

WAY to GO - SAMMY!!

KEEP on Gettin Better!!

http://petoftheday.com/i/our_smilies/smile.gif

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

[Pawsitive Thinking]

Prayers for you sweet Sammy - you are an inspiration to us all xxx

[Barbara]

Sammy, what a fighter you are!
I am so glad to hear you are better.

If you appreciate cat nose kissies, Filou and Tigris send some fresh and cold ones :)

[Cinder & Smoke]

http://petoftheday.com/i/our_smilies/biggrin.gif

Wednesday, December 14, 2005 at 12:59 PM EST

Sam is improving each day, and was extubated yesterday;
she's breathing great on her own, and slept through the night. http://petoftheday.com/i/our_smilies/smile.gif
She has opened her eyes, but doesn't stay awake for long --
her sedation is now off, but it will take a little time before she's fully awake.
She has managed to cry, though!

Her arterial line has been removed, and though she was puffy yesterday,
the fluids are coming off, and she's "deflating" as I type.

Dialysis won't be necessary, which is great.
She has bled a bit into some old wounds, so some of her scars are darker,
and she's had a little blistering/bleeding, but plastics has been alerted,
and we'll wait to hear what they have to say.

She did mouth a small kiss to me yesterday, and
gave her Barney a brief hug.
She received a shampoo & hairstyle (pigtails), and
is nearly ready to leave the PICU -- maybe tomorrow!
She will need to finish the course of antibiotics,
so she'll recover on a regular floor for a week or so, at least.
They are lowering the lasix as well.

They identified the bacteria; it's a GI bug, and a pretty uncommon one.
It's not an esp. resistant one, luckily, and
they feel they have it under control.
The PICC did not appear infected, but the fact that she had a
line in increases the chances for infection, so they still think it's involved.

We're hoping Sam will be hungry when she wakes up, and
have the menu in front of us, to order some of her favorites.

Thanks, everyone, for your support and prayers;
Sam plans on being home as soon as she can!

Jessica

PS: Yesterday was one year to the day when Sam was
first placed in my arms!

---------------------------------------------------------
Happie *Gotcha Day*, Sammy!!

Now let's see if you can make it Home to see Santa!

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

[ramanth]

Phew!! So glad to hear you are bouncing back from that scary setback Sammy! :D

[RobiLee]

Keep on fighting, Sam! I am praying for you and hoping you will be home for Christmas with a big smile on your face.

{{HUGS}}

[chocolatepuppy]

Sammy, you will be in my prayers.

[sasvermont]

Sammy and family must be so exhausted and confused. What more must they endure? It seems as though they had things on track and now must re-join the hospital scene. Hopefully they will be home soon, just in time for Santa to arrive. If not, I bet Santa will come to the hospital to visit Sammy and family.

You are in my thoughts day in and day out.

((((((((((((((((((((((Sammy and family))))))))))))))))))))

[gini]

Yes, my thoughts exactly..........how much more? How my heart goes out to this family.

Continued prayers are being offered that Sammy will conquer this latest challenge and be home in time for Christmas.

[slick]

My apologzies for not keeping up with this thread. I've only learned about the setback this morning. Sammy, you and your family are an inspiration to us all and seeing what you've been through makes our own lives a piece of cake.
This certainly puts my whining about my life in perspective. Isn't that the truth Staci?? You and me....we have absolutely nothing to complain about.

Speaking about "piece of cake" was that on the menu??? ;)

[Barbara]

Big relieved sigh! Sammy I can't get over what a fighter you are- sweet girl.

{{{{{{{Hugs}}}}}}} for you and your family.

[Cinder & Smoke]

Thursday, December 15, 2005 at 05:25 PM EST

Today hasn't been a good day for Sam,
and she won't be leaving the PICU yet. http://petoftheday.com/i/our_smilies/frown.gif

She's been in and out, but when her eyes are open,
she doesn't seem cognizant of anything or anyone -- even us.

She's begun having seizures, and has had 5 episodes today.

They did a CAT scan, which looked fine, but doesn't always offer a complete picture.
They have her hooked up to an EEG, and
will put her on anti-seizure meds. They're not sure why she's seizing,
as she never has before; the immunology folks have been by,
and will be doing some testing to rule out an immune deficiency problem.

They are also going to do a spinal tap to see if the bacteria managed
to cause any swelling or inflammation upstairs.

Her kidney function is stable, and they expect it to continue to improve,
now that the acute period is over, which is good,
but now we have this new set of worries.

Please pray hard for Sam, as her battle continues.

Jessica

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

Dear God ~


Please, can You give Sammy, Jessica, and Rob a break?
We'll Pray that tomorrow is a Better Day for Sam.


Thanks God

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

[Craftlady]

Keeping continued good thoughts and prayers for a speedy recovery.

[slick]

I agree Phred.

God:
I do think it's time to put a stop to all this heartache. This family has been through enough and I pray that little Sammy will get well can be home for Christmas Day! Please, can you place your healing hands in just the right spot to bring peace to this family. Thanks God.

[krazyaboutkatz]

I'm so sorry to hear about Sammy. Lots of prayers and positive thoughts are being sent to both her and her family.

[gini]

I simply hurt for this family............Dear God, please, this is now too much to ask of all three of this family.

I continue to pray HARD for Sammy.

[sasvermont]

Such sad news for such a lovely family. I hope that things settle down and Sammy turns the corner for home, soon. She needs our good thoughts, vibes, prayers and toss in a little luck, can't hurt. Oh my.

[Barbara]

Oh- it is so sad to hear that. Sending all my love and hopes that Sammy is going to better soon.

[Cinder & Smoke]

:)
Friday, December 16, 2005 at 11:27 AM EST

Today is a better day! ~~ Sam had no seizures overnight,
and they suspect the seizures were from a drug she's been on;
the spinal tap was negative, thank God,
so there's no reason to think a more "sinister" reason lies behind the seizures.

She's much more alert today, and has spoken to us!!!
When Daddy held her favorite toy school bus in front of her,
she said, "Hi, school bus!"

She also looked at me and said, "Mama",
and when Daddy handed her something,
she said, "Thank you, Daddy",
so we think she's back!

She's still very tired, as seizures wipe you out for a while,
plus all the testing and meds, so nobody expects her to be overly perky,
but we're so happy and relieved to see her responding appropriately
and interacting a bit.

Thanks,

Jessica

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

Thanks God!

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

[gini]

With that excellent news (thanks Phred for posting it), I can now begin the day not quite so worried about little Sammy. But I won't stop the prayers.

I can just imagine, when she says "Mama" or "Daddy" under these circumstances you must just fall apart with your heart singing at the same time.

[slick]

Thanks God! I knew you would let them down!!

[Anita Cholaine]

Great news!! :) I'll still be sending prayers for you, little Sammy.....

[Uabassoon]

That's great news! Thanks for keeping us updated Phred.

[Cataholic]

This is like nothing I have ever known before. We go from the lowest of lows to the highest of highs nearly every day. I am not sure how Jessica and Rob remain so strong and focused, when the rest of us fall apart so easily. Thank you for your continued support and prayers. It means more than you can know.


Johanna

[sasvermont]

What good news. I hope things for Sammy start to turn around for good!


((((((((((((((((((((((Sammy)))))))))))))))))))))))


With love,

From the campers and Sas

[Barbara]

Just a big smile here- I also am following that up and down movement.
I am so sorry the littlemgirl needs spinal taps. The ones I had ten year ago were bad enough.

But I'm so happy she recognized her school bus. Some extra hugs to Rob and Jessica :)

[popcornbird]

So glad to hear Sammy's doing better. Still sending prayers and lots of love to sweet little Samantha. {{{hugs}}}

[Cinder & Smoke]

Saturday, December 17, 2005 at 03:16 PM EST

http://petoftheday.com/i/our_smilies/smile.gif
Sam continues to improve, and we've relocated --
we're over in A6 South,
the same floor where we finished our last tour of duty.

Sam was pretty perky this morning, and is sitting up for longer periods;
she has taken a few bites here and there, and is drinking juice.

They took her off the oxygen this morning.
She is talking a little more, but is still groggy;
it will take a few days, at least, for her to get back to her usual self.

She will stay on anti-seizure meds for a few months, and
will probably have an MRI before she leaves, just to be on the safe side.

The meds are slowing her down a little, too.
The antibiotics will be a 14-day course,
so we should finish a minute or two before Christmas --
and can hopefully go home!!

Thanks,

Jessica
---------------------------------------------------

HOME for Christmas sounds GOOD!!
Keep on Progressing, Sammy!!

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

[krazyaboutkatz]

I'm so glad to hear that Sammy is doing much better. More prayers and positive thoughts are being sent her way. :D

[Karen]

New update, new prayers needed:

105 December 18, 2005 at 08:41 PM EST
Today was not a good day; Sam is extremely lethargic and basically not responding to us at all. It appears that the anti-seizure meds are the cause, and they are working on modifying that. She also has diarrhea, a nasty fever blister on her mouth, and a fair amount of discomfort/bleeding from her old graft sites. It's very hard to see her like this and not be able to comfort her at all. Please say some extra prayers for her tonight, in the hopes that tomorrow will be a better day.
Thanks,
Jessica

[jenluckenbach]

Oh that poor baby. :( Many prayers for you Samantha, we all need to you stop hurting. I am crying for you and your family, but I am also trying to send you all some strength to get through this.


{{{{{{HUGS"}}}}}

[slick]

Karen, thank you for posting this. As much as I've been wrapped up with my own issues with Speckles, I've never stopped praying for this little girl in the hopes that she will be home for Christmas. :(

[Uabassoon]

Sending many prayers your way.

[krazyaboutkatz]

Poor Sammy. :( Lots more prayers and positive thoughts are being sent her way.

[Barbara]

Ok, Sammy, we all know that you and your purrents and all of us were happier if you could come home- but if you don't there will be a Christmas party in the hospital and we all will be there with you- in our thoughts.

Most important is that you get over that nasty infection and over the meds side effects.

[jenluckenbach]

Ok, Sammy, we all know that you and your purrents ........

Since laughter is the best medicine and humor cures all ills, I would like to point out that Samantha has PARENTS not purrents.......:D :D Isn't it funny how we "animal people" think?? I have been know to say that I had a vet appointment (when I meant a doctor appointment.....LOL)

I am not making light of the situation, I am praying hard for Samantha and her family, but I think we could all use a little giggle. :)

[Anita Cholaine]

Sending prayers on your way, little Sammy...:(

[lbaker]

Jen, when you meet small children do you give them head and ear critches? I've been known to ;) Have a better day dear little Sammy :)

[popcornbird]

Precious Sammy, please get well again soon. :( Sending more prayers, and lots of love your way. God will help you through this as He did before, little one.

[Barbara]

Maybe I forgot how that word was written :o
Anyway purrents sounds even warmer and I am sure Sammy girl can need all warm feelings we can send :)

[sasvermont]

I keep wanting to know more about how she is doing, all the while, knowing that it is taking so much energy just to see her through the daily routine of testing and medicating etc. that that probably leaves little time to sit down and type on a keyboard.

I just cannot imagine the strength it takes to get through difficult times like these. Sammy's parents are so terrific. My gosh.

((((((((((((Sammy and parents))))))))))))))))))))

Merry Christmas you three. I hope Santa stops by and is good to you.

Bless you hearts.

SAS

[Cataholic]

SAS- there is still no change. Sam went for an MRI this morning, and I haven't heard from my sister yet. :(

[gini]

Sammy and your entire family have my deepest prayers.

[Edwina's Secretary]

I love the mental image of "purrents"....I see Samantha's loved ones purring for her....as am I.....

[Cinder & Smoke]

Tuesday, December 20, 2005 at 04:16 PM EST

Well, Sam is still pretty out of it, but the good news is that
all the major disasters have been ruled out --
her MRI and additional EEG looked fine, and none of her labs are suggestive
of anything that would knock her out like this,
so we're still probably dealing w/anti-seizure med side effects.

She should come back around within a few days.

While in recovery after the MRI, she did stir suddenly and say, "Daddy."
(Of course!)

We're relieved that all the tests have checked out fine,
but we miss Sam terribly, and are anxious to have her back.
Wake up, Sam!

Thanks,

Jessica

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

Yuppers, Time to Wake UP, Sammy!
Hey - you don't want to s;eep through Sandy Paws coming to Town!
;)

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

[AmberLee]

Any new updates?

Anxiously,
A.

[Barbara]

Anyway- that's good updates. I think it is obvious that any infection will attack Sammy much much more than any healthy child who has not gone through so much in the last year.

Our thoughts are with you all the time.

[Cinder & Smoke]

Wednesday, December 21, 2005 at 01:41 PM EST


One word yesterday, two today:
"Wiggle" (a Wiggles ad was on TV), and
"Barney," when her "I love you" Barney was singing to her.

She appears a little less glassy-eyed. Right now I have her sitting up,
propped on pillows, and an OT was working w/her, stretching her arms;
PT will work w/her, too, to get her moving around again.

She had a slight fever this morning, so just to be on the safe side,
they're culturing for infection. Immunology came by, and the doc's been
reviewing her blood counts/bloodwork over the last year, and he thinks
something might be up w/her white blood cells -- her lymphocytes,
specifically. They will be sending bloodwork to the lab, and we hope
to know something a little more conclusive within a few days.

Please pray that anything they find is of the minor variety --
Sam has enough on her plate.

Otherwise, we are just watching and waiting.

Thanks,

Jessica
-----------------------------------------------

We're all Watching, Waiting, and Praying right along with you!
Come on, Sammy - Time to Get Better!

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

[Barbara]

Oh that is something to keep fingers crossed about. I hope so much all these lymphocytes are just a little varying....

[Cinder & Smoke]

"Daddy!"

:)

December 21, 2005 at 04:31 PM EST



Well, three words ... when Daddy came in after work,
she cried out, "Daddy!"


So we have the Wiggles, Barney and Daddy ...
could Mama be next?


I'm going to be upset if it's "Baby Bop."

/s/ Jessica (aka Mommy) ;)

[Cinder & Smoke]

Wednesday, December 21, 2005 at 07:53 PM EST


Yes, three updates in one day...it's been a busy one.
Around 5:00, Sam started throwing a HUGE fit,
complete w/screaming and flailing.


They had to bandage her stumps, as she was kicking and thrashing
so much, scabs broke and she started bleeding quite a bit.

This went on for a good 30-45 minutes; she was not easy to sedate.
It seemed like fear/anxiety to us,
but she's likely in some discomfort as well.


They wound up calling one of her ICU docs down to take a look;
he suggested blood pressure meds, as her BP was getting a bit high,
lasix, a chest x-ray and a blood transfusion,
as she's been seeping a bit from the wounds.

Hopefully the x-ray shows nothing.


She's quiet now, but not sleeping -- she's huddled under her red
blanket, looking quite mad.

It was a very unpleasant thing to see --
it took 3 people just to hold her down
while a plastics doc bandaged her up.
(We were helping, but it didn't comfort her at all.)


We don't know if this means she's really coming out of it,
and realizing where she is, or if something else is going on;
the ICU doc doesn't think it's any type of withdrawal from sedation
or anything, and neuro says it's not a typical response
to the removal of an anti-seizure med.


So....more waiting and wondering.

Let's hope Sam sleeps soundly and peacefully tonight.


Thanks,


Jessica

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

Prayers for a quiet, restful night;
and a Better Day tomorrow.

{{{Hugs}}} for Sammy, Jessica, and Rob.

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

[jenluckenbach]

How frightening and sad. :( More prayers for you, Samantha.

[Craftlady]

I get notification of updates via email from the hospital site. I always hold my breath when I see an update has been made that it is a positive one. This had got to be a stressful time for her and the family, this little gal sure is a fighter that has had to endure way more than any child should ever have to experience. Will continue to keep good thoughts and prayers for the days ahead that the doctors will find the answers.

[Barbara]

Yes- that sounds frightening. I hope they can do something to get her feel better- and find out what is happening. I am so sorry- I hope Sammy is soon on a better way.......

[Cinder & Smoke]

Thursday, December 22, 2005 at 04:13 PM EST



Late last night, the decision was made to monitor Sam closely
in the ICU for a couple more days;
her BP remained high, and her breathing seemed a bit labored.

Both issues were resolved overnight,
but she'll remain in ICU until at least tomorrow.

Nothing is growing out of any cultures so far, and
they did another cat scan last night, which was normal.

It's possible that her kidneys aren't getting enough acid out,
which could cause some of her symptoms, so they are addressing that.

She's a little more alert today,
and we're trying to get her to eat and drink,
as that's one of the criteria for discharge;
if she's unable to eat by tomorrow,
we'll have to consider a feeding tube again, at least temporarily.

I've gotten a couple smiles out of her today,
but she is not happy to be here at all.
Please keep her in your prayers.

Thanks,

Jessica

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

A "couple smles" is better than none.

We'll make sure Sandy Paws knows where to find you on Christmas Eve. ;)

[momoffuzzyfaces]

Little Samantha is remembered every morning in my prayers!
Bless you little one!

[Alysser]

Aw! Poor lilttle Samantha. Your in my prayers. Good luck!

[Cinder & Smoke]

Friday, December 23, 2005 at 11:40 AM EST


Sam continues to be a bit more alert each day;
she's been laughing and giggling a lot today, mostly at Daddy.


The main issue right now is nutrition;
because she's been drooling constantly and unwilling to swallow,
it's assumed there might also be a sore in her throat.
Until that heals and she's ready to eat again,
she'll go back on a feeding tube;
it doesn't make us happy, but it's a necessary measure, at least temporarily.


We're still in the ICU, and there's no word yet as to when
we'll go back to A6 South, but I suspect it will be soon.


The immunology doc stopped by to collect more blood samples, and
said he might have some more information for us later today.
He did say that her immunoglobulin assessment was normal -- but
he didn't go into specifics, and he's testing for a lot,
so I'm not sure what that means at this point.


Thanks for your continued prayers and support,


Jessica

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

Santa will *find* you no matter where you are Sammy ...
we just wish it was going to be at Your House this year.

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

[Cinder & Smoke]

Friday, December 23, 2005 at 11:40 AM EST

Sam continues to be a bit more alert each day;
she's been laughing and giggling a lot today, mostly at Daddy.

The main issue right now is nutrition;
because she's been drooling constantly and unwilling to swallow,
it's assumed there might also be a sore in her throat.
Until that heals and she's ready to eat again,
she'll go back on a feeding tube;
it doesn't make us happy, but it's a necessary measure, at least temporarily.

We're still in the ICU, and there's no word yet as to when
we'll go back to A6 South, but I suspect it will be soon.

The immunology doc stopped by to collect more blood samples, and
said he might have some more information for us later today.
He did say that her immunoglobulin assessment was normal -- but
he didn't go into specifics, and he's testing for a lot,
so I'm not sure what that means at this point.

Thanks for your continued prayers and support,

Jessica

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

Santa will *find* you no matter where you are Sammy ...
we just wish it was going to be at Your House this year.

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

[slick]

Have never stopped praying for this precious baby. You are right Phred...."Sana" won't let her down.

[Barbara]

I'm there with you- thinking of Sammy and hoping they'll find soon how they can help her. And that everything what turns out NOT to be normal is only a little bit of something- and nothing serious.

I am so full of admiration that giggling and laughing is still a part of Sammy's life. Kids and cats are better in dealing with things you can't influence than we are.

[Cinder & Smoke]

Friday, December 23, 2005 at 08:57 PM EST


It looks like we won't be relocating during the holiday weekend,
so we'll be in the PICU for Christmas.

The feeding tube experiment was short-lived;
Sam vomited shortly after it went down, so we're going to
try to get her to eat & drink over the next couple days,
while she still has a line in to receive basic nutrients.

It really seems like the mouth sores are responsible, so she's on a special mouthwash
to help numb the areas, and maybe then -- hopefully! -- she'll be willing to swallow.

In other news, the preliminary immunology bloodwork showed
nothing abnormal, but he's still checking a few things;
let's hope the rest of it comes back okay, too.

That's it for now, as we head into the holidays;
I know Santa will find a good little girl like Sam wherever she is!

Thanks,

Jessica

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

Maybe PICU is the best Home away from Home for Christmas -
Sammy has LOTS of Buddies in there that worked with her before ...

We'll Pray she *perks up* and can enjoy Santa a bit.

{{{HUGS}}} to the whole Family!!

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

[Anita Cholaine]

Good thoughts for you and your family, Sammy... Hope you enjoy your Christmas... I'm sure that Santa will come for you...

[CagneyDog]

I hope you have a great Christmas Sammy! Enjoy your presents. :D

[Barbara]

I am sure Santa will have his navigation system right on Sammy's code ;) so he'll find her wherever she is.

I wish you all the happiest of Christmas- even if it is under not-so-good circumstances.

[Cinder & Smoke]

Christmas Eve, December 24, 2005 at 06:25 PM EST


Sam's more alert every day.
Today we sang "Jingle Bells" to her, and she supplied the "hey!",
which is her favorite part.

She enjoyed Barney videos and Christmas visits from some of our family;
Mom and Dad enjoyed the food! (We enjoyed the company, too.)

Sam drank a little juice today, which is a start,
but we still have lots of work to do in that area.

She's napping now, hopefully dreaming of candy canes and reindeer.

Wishing everyone a nice Christmas Eve,

Jessica
-----------------------------------------------

Wishing Sammy, Jessica and Rob a Joyus Christmas!

Sing it again, Sammy ... "Jingle Bells, Jingle Bells ..."

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

[Tubby & Peanut's Mom]

Oh little Sammy, I'm so sorry you had to spend Christmas in the hospital, but I just know Santa will find you there. There's no way he could miss such a strong special little girl. :)

[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

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

Thanks God, for sending Santy Claws to Sammy's room!
http://petoftheday.com/i/our_smilies/smile.gif

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

[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
----------------------------------------------------

http://petoftheday.com/i/our_smilies/cool.gif

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!

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

[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

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

*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!

[Cinder & Smoke]

Wednesday, December 28, 2005 at 03:19 PM EST


Sam's napping now; she was actually up by 9 today,
as the OT came in to work with her.

They're removing her central line momentarily,
so her nap will come to an abrupt end.

We strolled around downstairs today, which she really enjoyed.
She's been babbling quite a bit, and smiling a lot, which is wonderful to see.
She's still holding saliva in her mouth, though, which is an obstacle to
both talking and eating; hopefully once we're home, that'll resolve. ..

And we might be going home tomorrow! http://petoftheday.com/i/our_smilies/biggrin.gif
It's not definite yet, but it's the latest word;
I suppose if they change their minds, we can just stroll on out --
it's not like we don't know where all the exits are.

All immunology work thus far has come back normal.
They are going to look at a few more things -- really unusual stuff --
as most of what they typically see insofar as immune dysfunction has been ruled out. The genetics testing will take some time, so we likely won't know anything for a while, unless, of course, they're looking for the cuteness gene!!!
We're very sure that one's dominant in Sam! (Our unbiased opinion, naturally.)

Sam had her first set of kidney labs done by finger stick today,
and hopefully it will match up w/labs pulled from her line,
as after today, she won't have a line anymore.
We'll still be seeing our kidney friends regularly after discharge.

Well, that's the latest ...
hopefully I'll be typing my next update from the heart of Brown County, OH.

Thanks,

Jessica

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

We'll all Pray that Sammy is HOMEward Bound tomorrow!

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

[sasvermont]

As I am sure everyone would..... I am putting my money on Sammy and family being home today, for the weekend and to start the new year off on a positive note. I surely hope my dream comes true for them. Gosh.

I think if we could "buy" good health for little Sammy, she would have a million dollars from all of us, in five minutes.

Here's to 2006!

[Cinder & Smoke]

:)
Friday, December 30, 2005 at 08:54 PM EST

Sam's had a good first day at home;
she slept through the night last night,
and didn't wake up until nearly 11:00 this morning!

I spent the morning catching up on nearly 3 weeks of housework,
but it sure beats being at the hospital.

It was so nice to peek in her crib and see Sam curled up on her side,
snoozing away. She's enjoying lots of new toys,
and she's been sipping juice, and even had a bowl of Honeycombs.
We are still going to supplement her diet w/her formula,
and have her "on the tube" overnight,
but let her eat and drink whatever she will during the day.

I was pleasantly surprised that she was willing & able to eat by mouth
her first day home; the drooling has stopped, so that could be a factor --
I noticed that it had nearly stopped her last day at Children's.

She's more and more herself each day.
I think she's just resting up for all the great things she has planned for '06!

Thanks,

Jessica

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

HOME, Sweet HOME!!
:D

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

[Barbara]

Sammy! Way to go! :D :D :D

[sasvermont]

Such great news Jessica, Rob and Sammy.

Here's to great health and happiness in the year 2006!

I think about you Sammy and family, every day. Happy New Year to you and your extended family.

From all the campers here in South Hero, Vermont! :)

[AmberLee]

What wonderful news, I'm so happy for you all!

[krazyaboutkatz]

This is wonderful news!!!! :D

[Cincy'sMom]

Yeah Sammy!! May 2006 be a Happy and HEALTHY new year for you!!!

[sasvermont]

I hope you have fun filled days and your health is steadily improving.

Love from Camp Vermont

:)

[Vio&Juni]

I hope this New Year 2006 will bring you health, Sammy!

[Corinna]

January 04, 2006 at 02:56 PM EST
Well, '06 is off to a decent start; Sam is home, and improving more each day. She continues to eat by mouth, but only what she wants...it was Honeycombs for a couple days, then hot dogs, and now Cheetos. She is definitely her father's daughter!! She's still not crawling around, but is turning herself around while sitting, so I know she'll be zooming around again in no time. She's pretty much back to herself in all other ways, though, and is busy cracking us up. I'll update again after her Children's check-up on Friday.
Thanks,
Jessica

Since Phred can't be here to do this I will fill in.
Go Sammy

[gini]

Corinna, thanks for the update.

Sammy, bless your little heart - what a joy to hear that you are
demanding only the foods you love - now that sounds pretty normal to me.

And that you are making Mom and Dad laugh............they need that and you know it, don't you?

[lbaker]

Honeycombs, hotdogs and Cheetos! :D Sounds like a good snack to me :D Lord love you Sammy.. and so do we.

[Barbara]

Sammy if I was you I also would take advantage of the situation regarding snacks ;) Now they are happy for every bite and healthy veggie time will come soon enough. :)

[slick]

She continues to eat by mouth, but only what she wants...it was Honeycombs for a couple days, then hot dogs, and now Cheetos. She is definitely her father's daughter!!
My gosh...this sure brings a smile to my face. Corinna, thanks so much for updating us.

[Corinna]

January 07, 2006 at 06:18 AM EST
Sam was a big girl during her check-up and didn't cry once; the visit included a finger stick and a shot, so we were impressed by how brave she was! I won't know about the lab results until Monday, but her BP was fine and so is her weight. She will continue to take some formula through the tube over the next couple weeks, but it should be out this month, as we begin to give her less and less, allowing her to develop a bigger appetite during the day. She enjoyed some chicken nuggets last night. The spots on her skin that took a hit during this last illness are healing up nicely, and each day she's stronger.
Thanks,
Jessica

She's so incredable. such a strong spirit.

[sasvermont]

Hope she is thriving.

Good vibes coming from Camp Vermont! :)

[Barbara]

I hadn't seen the last report. I hope Sammy is continuing to get better and better. Her little soul is already one of the strongest :)

[slick]

I want to bump this up. With all the attention on Phred, I didn't want little Sammy to be forgotten.

Still thinking about you sweetie and hoping that you are improving everyday. There have been no more uppydates since the 7th.

[Cataholic]

I happen to know a little girl that is making her first trip to Shriner's Orthopedic tomorrow (Friday)! This will be the phase of the journey where Sam will be outfitted with prostheses. I don't know how long this process is, but, it is exciting. Shriner's is in Lexington (or, Louisville!) Kentucky- about a 2.5 hour trip for Sam.

May tomorrow be the start of something big!

[Corinna]

Catahoilic thanks for the up date. I am keeping it posted here while Phred is unable too.

[Barbara]

Oh that's exciting news! We keep our fingers crossed for Sammy. One good thing: during her life prosthethics will continue to develop. She is in a much better situation than a child would have been ten or twenty years ago and it will continue to improve.

[Vio&Juni]

Oh, good luck with that, Sammy!

[CathyBogart]

I thought of you yesterday Sam!! There is a young man in one of my college classes who was born with a birth defect and had to have both of his legs amputated above the knees shortly after he was born. He gave a presentation about it and showed off his prosthetics.

I was so impressed. I actually didn't notice the prosthetics (Even though they don't remotely look like legs) at all because he walks normally. He said that his parents were an enormous support to him growing up, and helped him find a way to do whatever he wanted to do, and now he plays basketball and baseball competitively and he'll be running a 100 meter dash in the paralympics!

You're a vey lucky girl to have such a wonderful family behind you, and I know you'll be able to do whatever you set your mind to as well! I'm so glad to hear that you're back to yourself, though I don't get it about the Chee-tos, ick! ;)

[slick]

Johanna, I'm sorry I didn't see this update sooner. Thanks so much for the great news. Go Sammy!!! You are still in my thoughts and prayers sweetie.

[Pawsitive Thinking]

I want to bump this up. With all the attention on Phred, I didn't want little Sammy to be forgotten.

Sammy will never be forgotten - so small but so brave, she is an inspiration!

[gini]

Sammy forgotten? Bless her heart, with all of these "Aunties" and "Uncles" praying for her there is little chance she will ever be forgotten.

Sammy, we love you........... and I say a prayer for you and your Mommy and Daddy every day.

[Corinna]

New update
January 13, 2006 at 08:48 PM EST
We had a nice trip to Lexington, and were very impressed w/both the facilities and the staff. Sam was up at 6 a.m. for the journey, and stayed up until the trip home, so it was a long morning for her. She only cried during the x-rays, something she hates. We discussed the general game plan, and they gave us stuff to do at home w/her to desensitize her stumps, which mainly consists of touching/massaging them w/lotion, wash cloths, our hands, etc., to get her used to being touched there again. We will also continue hip stretches with her. We'll return in @6 weeks for molding/casting, to allow time for the final scabs (from this last bout) to completely heal; if they heal sooner, we may return sooner. Then after the molds are made for the prosthetist to use to make the first legs, I'll return w/Sam for about a 2-week inpatient stay, so she can be fitted and they can work w/her. Most of Sam's "therapy" will be done by us at home; they show you how & what to do. They don't fit children w/"full" (knee-jointed) legs until @age 4, so Sam will have the shorter version to practice on until then. We also discussed the possibility of bone overgrowth w/child amputees, and the potential need to go in periodically and "shave" back part of the bone in the stumps, so it doesn't cause pain/problems for her; this is a problem they anticipate w/most kids in these circumstances, and they watch for it and treat it accordingly. All in all, it was a hopeful and informative visit; it was inspiring to see other children getting around on their prosthetics, and we're so glad that experts in the field will be doing all they can for Sam.
Sam is feeling better each day, and continues to eat (what & when she wants!); we are not keeping her on the feeds all night long anymore--instead, we let her eat what she's going to at each "normal" meal time, then supplement after the meal accordingly, to make sure she's getting enough calories/nutrition. We're heading in the right direction, and the tube should be out soon. I still haven't heard anything about her labs, but I assume if the news was bad, they know how to track us down! We will see them next week, and see her plastic surgeon as well, and maybe have her fitted w/her pressure suit. Sam's starting to scoot around a little, and is definitely more active each day.
Thanks for the continued support.
Jessica

[sasvermont]

I truly hope Sammy and family's lives stay on this positive turn and only ordinary problems come up from time to time. They have had their quota of big problems.

Sammy, you have so many folks thinking and praying for your health and welfare. I hope some day, you will be able to understand all of this and it will give you comfort.

[Barbara]

I am very impressed about this visit. Modern medicine is amazing, isn't it. But not as amazing as Sammy and her parents.

I hope the little girl is continuing to improve. :)

[slick]

Way to go Sammy!!! Not a day goes by that I don't think about you and say a silent prayer. Jessica, I think it's great that you can perform the therapy at home....even with furkids, being at home is so much better. :)

[Cinder & Smoke]

Monday, January 23, 2006 at 05:48 AM EST


Sam's doing very well, and is once again scooting all over the place.

Her feeding tube is out, and her last labs were fine;
her iron was a little low, so we're giving her iron drops in her juice.

The plastic surgeon said the last scab should be gone in a couple weeks,
and she can start wearing her pressure pants then;
meanwhile, she's wearing the top part, which is like a long-sleeved onesie,
and includes gloves. She won't wear a glove on the left hand until after her tendon-release surgery, which should be sometime in the next month or so.

There's nothing new from immunology; they are going to check a couple more things, and are then thinking about putting Sam on long-term antibiotics just as a safeguard.

Sam was able to visit her friends at preschool last week,
and she really enjoyed that;
she also had a playdate w/her friend Jillian two doors down.

It was so nice to see her having fun with other children.

Other than that, she's enjoying each day, and
especially likes her daily baths!

Thanks,

Jessica

http://www.carepages.com/usr/G26254/P265919_FS.jpg

http://www.carepages.com/usr/G26254/P265928_FS.jpg

[Corinna]

Glad your back Phred I was just going to add the latest glad you beat me.

[slick]

Oh my Lord....just look at the sweet face. That smile lights up my heart. Sammy, it's good to hear that you are being a "normal kid" again and enjoying some quality playtime. If only you knew what an inspiration you are to me.

Phred, good to have you back.

I have to go now....major LES here.

[gini]

Boy oh boy, does that do my heart good to see that precious smiling Sammy!

Such a good report - and special prayers being said that the reports will continue to be excellent.

We sure do love you Sammy!

[Cinder & Smoke]

Saturday, February 04, 2006 at 06:35 AM EST

Sam continues to do well, and had a good visit yesterday at Children's;
she won't go back until next month.

Her final scab finally fell off in the tub a few days ago,
so she was also fitted w/her "pressure pants."
She doesn't seem to mind the suit very much.

She's all over the place now, and likes her home therapy sessions w/Mom
--
she's constantly flipping over on her belly and saying, "good stretch!"

She does the same in the tub, and enjoys pretending to swim from one end to the other.

She has a little cold, but it's not affecting her too much,
and she continues to eat and drink well.
She's also had some success on the potty seat a few times.

She may start antibiotics soon, just as a precaution, even though her immunology testing didn't show anything;
her kidney doc also added a few meds --
mostly vitamin supplements, like calcium.

She's getting out and about regularly, to the library and coffee shop,
and we're hoping she can rejoin her preschool friends, at least part-time, in the near future.

Have a great weekend,

Jessica
-------------------------------------------------------

Seems like Sammy is starting to enjoy Normal Kid Stuff -
another Blessing to be Thankful for!!

Go Sammy!!

{{{Hugs}}} from us all.

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

[sasvermont]

Sammy, I am so happy for you and your family. I hope your progress will be unlimited and you sail through the next surgery on your hand.

You seem to know that you are loved by many.

We are all cheering for your speedy recovery and success.

Love from Camp Vermont :cool:

[Barbara]

I was close to missing these adorable pics of our Sammy! What a pretty girl she is and what a strong girl she is!
No adult would look that happy and mischievous after a year like hers.

I'm so glad she's having fun - Sammy, you rock!!!!!!!

Kissies to you :)

[Cinder & Smoke]

Valentine's Day, February 14, 2006 at 07:02 AM EST


Yesterday was Sam's first afternoon back at preschool;
she had a great time!
She also enjoyed a Valentine's Day/American Girl Tea party at the library on Saturday,
and a playdate with her pal Jillian the day before
--
she's been very busy!

It's so wonderful to see her back to her usual self.

I also wanted to point out an article in last Sunday's Enquirer,
for anyone who didn't see it or lives out of the area:
a boy named Dustin was profiled;
he's a high school wrestler who survived meningococcemia in '94,
and lost all his limbs. He lives in Hillsboro, not far from us.

It's a wonderful article, and can be accessed via the paper's website: www.cincinnatienquirer.com (http://www.cincinnatienquirer.com/) (Sunday, 2/12/06). It's in the sports section.

We head back to Lexington late next week;
thanks, as always, for prayers and support.

Happy Valentine's Day!
Jessica

[Killearn Kitties]

It's just amazing to hear that Sammy is doing so well and back at pre-school.
Keep getting better, sweetie! :)

[Pawsitive Thinking]

Beautiful pictures of a fantastic little girl! We could all learn a lot from Sammy

[Cinder & Smoke]

Here are a couple of the Cinci Inquirer articles about Dustin Carter -

the 16 yo high school Wrestler who lost his limbs to a rare blood infection known as meningococcemia, which is from the same bacteria that causes a severe form of meningitis.

http://news.enquirer.com/apps/pbcs.dll/article?AID=/20060212/SPT0301/602120409/1078

http://news.enquirer.com/apps/pbcs.dll/article?AID=/20060212/SPT0301/602120409/1078

http://news.enquirer.com/apps/pbcs.dll/article?AID=/20060214/SPT0301/602140386/1078

http://news.enquirer.com/apps/pbcs.dll/article?AID=/20060212/SPT0301/602120410/1078

Photos >>>
http://news.enquirer.com/apps/pbcs.dll/gallery?Site=AB&Date=20060212&Category=SPT0301&ArtNo=602120802&Ref=PH&Profile=1069

Dustin will be an inspiration for Sammy. ;)

[Anita Cholaine]

You're a total cutie, Sammy..... I'm really really happy to know that you're doing so well....... (((hugs)))

[Logan]

Happy Valentine's Day, sweet Samantha!!!! :) What a special, miracle girl, you are!!! :D

[Cinder & Smoke]

Friday, February 24, 2006 at 09:00 PM EST


Sam's doing well, and enjoyed her trip to Lexington today;
she was able to play with some other children, and was measured by the prosthetist.

Even though she had a late night last night -- and was up at 3 a.m. for a while --
when I woke her up at 6:00 to leave, she stayed awake for most of the ride,
watching a Wiggles DVD.

She was quite the social butterfly at Shriner's, greeting everyone,
responding with "fine, thank you" to all who asked how she was,
and she's also telling people she'll be 3,
which -- unbelievably -- happens next week!

The casting takes place at our next visit, which should be within a couple weeks, and then the inpatient stay for the actual fitting will follow a few weeks later, and I'm now told it will be 3-5 days, instead of 2 weeks. (The longer stay will occur when she gets legs w/knee joints.)

She slept nearly the entire way home.
She had a cold and cough most of the week, but is feeling better;
she went to preschool one afternoon last week, but rested up at home the remainder.

I also wanted to let folks know that a local motorcycle club,
headquartered in Bethel, will be having a benefit for Sam on Saturday,
March 11th, starting at noon, and it sounds like it'll be quite the affair,
with news crews, a D.J., food, raffles, and lots of people;
for those of you in the area, it's at 2845 SR 133, in Bethel, at Hardtail Cycle.
These very generous folks have put lots of effort into this for Sam,
and we can't adequately express our gratitude.

Next Friday it's back to Children's for the kidney check-up.

Thanks for the continued prayers,

Jessica

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

Things just keep getting BETTER and BETTER!!

Go SAMMY!!

[poofy]

I was reading all the post I could about Sam and and the stuggles and then I read about Dustin, and I asked God to forgive me for complaining of the small trials ihave had..Dear God they are an inspiration and their family to..I never did find that Photo gallery for little sam..I hope and pray all continues to be well for her..

[Cinder & Smoke]

Saturday, March 04, 2006 at 01:53 PM EST

http://www.carepages.com/usr/G26254/P265919_FS.jpg

Sam's check-up at Children's was fine yesterday, and her labs look good.

She's now a big 3-year-old, and will tell anyone who wants to know.

She enjoyed some cake, and Daddy helped her blow out her candles --
and she loved all her presents, too.

She had a great week at preschool, and seems to be feeling good.

The silicone "pockets" for the top part of her prosthetics have arrived at Shriner's,
and we'll go back to Lexington on the 14th for the casting;
her first legs may be ready in April!
Lots of excitement for Sam as we head into spring!

Thanks for the continued prayers,

Jessica

[Cincy'sMom]

That happy smile brought tears to my eyes! What an amazing story it has been following dear Sammy. I'm glad she continues to do so well, and pray that it continues!

[Pawsitive Thinking]

Sammy, I've said it before and I'll say it again..............you are an inspiration to us all. Feeling pretty low right now but your happy smile has made me count my blessings one more time - thank you sweetheart, you are a star!

[Cinder & Smoke]

Tuesday, March 21, 2006 at 07:07 AM EST


Sam continues to do well.
She was a trooper during the casting last week,
and her first pair of legs are on order!

The prosthetist called me at home later that day to tell me her shoe size will be 7.5,
and that she needed to bring shoes for our next visit,
so over the weekend she got a cute pair of shoes! We will be called when her legs are ready; I expect it to be sometime next month.

She's also having her tendon release surgery on her left hand next month,
and will spend at least one night at Cinti Shriner's. It will be good to have that
finger straightened out, and then she can start wearing a pressure glove on that hand. Her skin is really looking good, thanks to the garments.

The benefit in Bethel was lots of fun, and we met lots of great people --
many thanks to the Aeolus Motorcycle Club.

And, to top off all the excitement,
Uncle John bought Barney tickets for us for Sam's birthday,
and we will be going to see the big purple guy on April 2nd.
I'm sure Sam will be beside herself!

Thanks for continued prayers;
also, there are some new pix in the photo gallery.

Jessica


Sam with her Best Friends
http://www.carepages.com/usr/G26254/P245280_FS.jpg



Sam and Barney at Lexington Shriner's >>>
http://www.carepages.com/usr/G26254/P310872_FS.jpg


Sam posing w/members of the Aeolus at the benefit.
What a great group of people!
http://www.carepages.com/usr/G26254/P310896_FS.jpg

[Corinna]

There is also a picture of Sammy and Jonah so cute cusins.

[Pawsitive Thinking]

Wonderful little girl

[Barbara]

Hey Sammy, I missed you at the beginning of this month but here you are again, looking very much alive and kicking with Barney under your arm.

I think that leg thing is very exciting. It must be a good sign that we don't hear about you that often any more but we for sure think of you and keep our fingers crosse. :)

[sasvermont]

Dear, sweet Sammy-girl!

You are one very lovely human being, and your parents are so very blessed having you in their lives. I know that you all have had immense hurdles to overcome and there may be a few left for you, hopefully not.

I have enjoyed your photos - love the one with your colorful friends - humans and stuffed!

You brighten up so many lives, Ms. Sammy.

(((((((((((((((((((Sammy))))))))))))))))))

Love and furry kisses,

Sas and her campers in Vermont ;)

[Kenley's Cat Lady]

What a beautiful girl, and what a fighter, glad to hear you're doing better! The challanges you face will be nothing compared to what you and your family have already been through! Best of luck to you all!

[Cinder & Smoke]

Sammy on December 5, 2005

http://www.carepages.com/usr/G26254/P265928_FS.jpg


Happy 3rd Birthday

http://www.carepages.com/usr/G26254/P310873_FS.jpg


Opening presents w/Grandpa and my dog Houla

http://www.carepages.com/usr/G26254/P310875_FS.jpg


Sam and cousin Jonah reach a stalemate.
Neither wants to share.

http://www.carepages.com/usr/G26254/P310897_FS.jpg



'Sup, dawg?

http://www.carepages.com/usr/G26254/P310887_FS.jpg

[Anita Cholaine]

It's so nice to hear about you, Sammy! I loved seeing your pics too, you're such a beautiful girl!

[slick]

Sweet Sammy:
Thank you for bringing a smile to my face and showing me what life is all about. I look at your sweet face and I just melt and tears come to my eyes. You are such an inspiration to us all. So glad that things continue to improve. Continue prayers come out to you sweetie. God sure has his loving hands on you. :)

[Cataholic]

Isn't Sam just absolutely the most precious child, ever?

This is getting to be an exciting time for her, and her parents.

[shais_mom]

Isn't Sam just absolutely the most precious child, ever?

This is getting to be an exciting time for her, and her parents.

2nd only to Jonah! ;)

[Cinder & Smoke]

Friday, April 07, 2006 at 03:10 PM EDT

Well, we spent most of this past week in Lexington,
and Sam now has her legs at home.

It was a little scary for her, and she still doesn't love having her legs on, but that's perfectly normal. For the next couple of weeks, she'll practice standing and walking--with a walker--for a couple hours a day, and we'll gradually add time until she's on her legs for most of the day.

The prosthetist and therapists were great, and she actually enjoyed most of her time at Shriner's, as they have a wonderful playroom and really good hotdogs! They decided to go w/the strap-on legs as opposed to the type w/bolts, as the latter proved difficult to secure. I have photos and will put them in the gallery asap.

Before we left for Lexington, Sam was able to see Barney, BJ & Baby Bop live at the Taft Theatre, and she LOVED IT. Thanks, Uncle John, Aunt Toni, and Cousins Jamie & Jordan!!! I actually had tears in my eyes at times during the show (no, not because of the songs, though that was certainly a possibility!) because it amazed me that not even a year after her illness, she was able to enjoy something like that. I never would have thought it possible last spring or summer. I felt the same way seeing her w/her new legs. Unless there's a problem w/the legs, we won't return to Lexington until early June.

Her visit at Children's went fine today, and her kidney doc doesn't need to see her for a couple months, unless something unusual pops up in the labs. She will be admitted to Cinti Shriner's next Wednesday for an early Thursday morning tendon release, so it's a busy time for Sam. We should be home later Thursday or early Friday.

Please keep Sam in your thoughts as she works hard to walk again and
makes this next transition.
Look for photos soon!

Thanks,
Jessica

---------------------------------------------------------
WOW!!
NEAT-O !!

GO, Sammy, GO!!
We're with you all the way!! http://petoftheday.com/i/our_smilies/wink.gif
----------------------------------------------------

[sasvermont]

Can't wait for the photographs.

What great parents little Ms. Sammy has...... it brings tears to my eyes everytime I read about this little tyke and her family and friends.

Sammy is so loved by so many people, but especially her Mom and Dad!

You go girl! :cool:

[gini]

Nothing quite brings me to tears as easily as a Sammy update.

I cannot tell you how thrilled I am that we can read about such incredible progress being made.

May God continue to be with you each step of the way.

[prechrswife]

I was just thinking about Sammy the other day, so the update came at a perfect time. It is good to see her making so much progress. :)

[Cinder & Smoke]

Friday, April 14, 2006 at 09:19 PM EDT



We checked into Cinti Shriner's Wednesday afternoon, and came home early this morning;
the surgery was yesterday morning, and it went fine.
Sam has a pin that will be removed from her finger next Friday,
and a big splint on her left arm that will be downsized next week as well.
The plastic surgeon grafted some skin from her groin to use on her hand,
and it usually heals quickly. After a couple weeks or so, she should be splint-free.

She can't use her walker for a while,
but we hope to help her w/her legs during this recovery period,
mainly so she stays used to the idea of having legs and being "up."
She doesn't seem to be in any pain, but I know she hates dragging that splint around everywhere.

She was happy to come home; she kept saying, "go home, see Daddy."
Her plastic surgeon said her skin was looking pretty good as well.
She received lots of presents and an Easter basket from Shriner's,
and enjoyed their playroom the day before surgery.

I will post a couple of post-op pics of her.

She can return to preschool Monday,
as long as she avoids "rough play and contact sports."
No football and hockey for Sam for a while!

Hope everyone enjoys a nice Easter weekend.

Thanks,
Jessica
http://www.carepages.com/usr/G26254/P323014_FS.jpg


Walking - with a little assistance >>>
http://www.carepages.com/usr/G26254/P323015_FS.jpg


"She's not happy - but she's Trying!!"
http://www.carepages.com/usr/G26254/P323016_FS.jpg


Riding on the Hospital's Cart - a favorite activity!
http://www.carepages.com/usr/G26254/P323034_FS.jpg


HAPPY EASTER, Sammy!!

[poofy]

Happy Easter Little One.. :)

[sasvermont]

Boy, these photos brought tears to my eyes, for sure. Such a brave little girl and such wonderful parents.

Happy Easter to all from Camp Vermont.

[Randi]

I'm so glad to hear about this progress - what a trooper Sammy is! :) Seeing the pictures of her smiling face is wonderful.

I will be sending positive thoughts to sweet little Sammy and her family, and hope she'll be spoiled for the rest of her life.

Happy Easter girl! You deserve the biggest Easter egg there is. :D

[Barbara]

Sammy- you rock! I still can't believe how happy you can look at us.
I understand well that walking with these things is not that much exciting- but it will be nothing compared to what you've been through.

Wish you a good visit of the Easter bunny :)

[gini]

Tears flowing on the West coast as well.............bless her heart!!

I wish your entire family the Happiest Easter - and all of the many blessings that come with this religious holiday.

[Cataholic]

Sam is such a stinker! The things Jessica doesn't share with the world....Sam woke up, ready to greet the day, at 3 am on Friday morning! They checked out of Shriners sooo early that day, and were home by 830.

Once this tendon issue is behind her, I expect Sam to be full speed ahead. :D

[Cinder & Smoke]

Wednesday, May 03, 2006 at 10:10 AM EDT

Well, the pin came out yesterday; they elected to keep it in an extra week.
The graft seems to have taken, and Sam only has to wear a splint
overnight for a while; Shriner's gave her gloves for her left hand as well.

She's not used to having that hand free again, and still holds it up when she
scoots around, but I'm sure it won't take long for her to realize she can use it.

The legs are still not high on her list, and we haven't been pushing it too hard
due to the hand surgery, but now that she can use her walker again,
we're going to make it a priority, and walking will be a major goal for this summer.

Otherwise, Sam's doing well and feeling great!

Thanks,
Jessica

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

Sing along:
A WALKING we will go, a WALKING we will go;
WALKING is *phunn*!!

[Pawsitive Thinking]

Major LES here - such courage and determination in someone so tiny!! God bless you sweet Sammy


http://www.carepages.com/usr/G26254/P323016_FS.jpg

[king2005]

Such great news :)

[Barbara]

Sammy good to hear from you! You'll soon be soo glad you can use that pawsie :)

[sasvermont]

I surely hope things are running smoothly for you and your family, sweet child.

I think of you often and wish you only the most fun things in life from now on.

You are such a special girl to all of us.

Love,
Sas and her campers :)

[slick]

Thanks for bumping this up SAS. I just noticed that this thread was started a year ago and just look at the progress that Sammy has made.

I hope you are doing well Sammy and I'm blowing you kisses from Canada.

{{{hugs}}} for Jessica and family.

[Cinder & Smoke]

Sammy & the Easter Bunny - March 31, 2006 http://petoftheday.com/i/our_smilies/smile.gif

http://www.carepages.com/usr/G26254/P351874_FS.jpg


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

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

All Systems *GO*! http://petoftheday.com/i/our_smilies/smile.gif

Your Fan Club is here to *Cheer* you on for a Fun Summer, Sammy.
http://petoftheday.com/i/our_smilies/wink.gif
---------------------------------------------------------------

[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!!http://users.pandora.be/bernardgabriels/images/smilies1015_Iloveyou.gif

[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

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

http://www.carepages.com/usr/G26254/P376358_FS.jpg

"Lookin Good", Kiddo!!

http://petoftheday.com/i/our_smilies/wink.gif

[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!!!

http://www.carepages.com/usr/G26254/P403646_FS.jpg


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!!
http://petoftheday.com/i/our_smilies/biggrin.gif
--------------------------------------------------------------

[DrKym]

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.

[Barbara]

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.

[slick]

I just want to bump this up. Any updates on this little miracle child??

[Cinder & Smoke]

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.

;)

[slick]

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

[Cinder & Smoke]

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!! http://petoftheday.com/i/our_smilies/smile.gif

That's so much GOOD News all at once it's hard to digest!! http://petoftheday.com/i/our_smilies/biggrin.gif

THANKS, God!!

[slick]

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. :)

[luvofallhorses]

wow! she looks SO much better! :D I am so glad she is doing better and continues to do better!!!

[krazyaboutkatz]

I'm glad to hear that Sam's doing so well. This is wonderful news.:D

[Barbara]

That's really a lot of news. And the best of it is that Sammy's life now has some normality in it. I'm glad to hear about these pressure wear that isn't needed anymore and keep my fingers crossed for that insurance.

[Pawsitive Thinking]

Beautiful child! We can all learn so much from you Sammy

[Cinder & Smoke]

http://petoftheday.com/i/our_smilies/smile.gif

Sunday, October 15, 2006 at 09:31 PM EDT

After a fun summer, Sam's ready for all the holidays.
She continues to enjoy preschool and is learning a lot.
Her last kidney check-up showed some elevated numbers, but her doc isn't concerned yet,
as they expect the numbers to jump around; it's not an issue unless it becomes a trend.
Our next kidney clinic is November 1st, so we'll see how things look then.

Sam has started weekly PT with a nice therapist named Kate, who has experience w/prosthetics, so we're hoping to make more progress in that area. She still doesn't like having the legs on, but I'm able to get her to practice standing and walking a little each day.

She enjoyed a visit with cousin Jonah on his 2nd birthday, and she also has 2 new girl cousins--Addison and Alexis--so she won't be so outnumbered by boys at family gatherings! Despite some rain, she managed to ride the merry-go-round at the Brown County Fair again, and she also got to sit on some real horses, courtesy of the McKeown family. She wasn't afraid at all. And, just like last year, she threw a royal fit when we had to leave!
I'll try to get pictures in the gallery asap; some new poses from Sears are in there as well.

Thanks for keeping Sam in your thoughts and prayers.
/s/ Jessica

Here's the August Flower Child >>>

http://www.carepages.com/usr/G26254/P525093_FS.jpg

[cyber-sibes]

What an amazing child! Prayers for Sammy and her family, for her doctors and specialists, for the insurance coverage, her PT, and continued healing of her body. Her story is so inspiring!

[Dorothy39]

What a Beautiful and Couragious Child. She has gone through so much and has made remarkable progress. Her story serves us with inspiration and Gracious Blessings!!!

Prayers for Sammy , her family , as well as for all the Wonderful People who are cheering her on!!!!

[DJFyrewolf36]

I'm glad to see and update! I'm still amazed at little Sammys progress.

I've been keeping up with this since day one and it makes me happy to see how well things are going for Sammy now.

Her continued good health will be in my prayers

[sasvermont]

Oh Sammy, you dear heart you. You are my hero.

We are all so happy that you have been doing so nicely. We all love you and want only the BEST for you.

Happy Halloween to you! What are you going to be this Halloween? A princess? A kitty? We would love to see photos.

Love and hugs from Sallyanne and all the campers!

[ramanth]

What a wonderful update and gorgeous photo. :D

[mugsy]

Well, 4 1/2 hours later....I am finally up to date...WOW...I'm gone for a year or so and miss so much!

I am so glad (and so is my student teacher who has been reading along with me) that Sam is making such wonderful progress. What a tough little cookie she is! She is an inspiration!!!

Keep up little one! I just wish I could see more of the pictures...most of them are now little boxes with red "x"'s I will look at home and see if they are there.

Jessica...you are unbelievable! What strength you guys have...you are heroes in my book too!

[kimlovescats]

It is so wonderful to see how far Sammy has come and what a happy well-adjusted little girl she is! Absolutely precious!!!! :)

[momoffuzzyfaces]

http://petoftheday.com/i/our_smilies/smile.gif

Sunday, October 15, 2006 at 09:31 PM EDT

Here's the August Flower Child >>>

http://www.carepages.com/usr/G26254/P525093_FS.jpg
Prayers have been continuing daily from me.

Now doesn't this picture just make your heart sing? :D

[cyber-sibes]

I'll try to get pictures in the gallery asap; some new poses from Sears are in there as well.Is there a link to another page ? Not sure where the "gallery" is :confused: Thanks!

[Cinder & Smoke]

Is there a link to another page ?
Not sure where the "gallery" is http://petoftheday.com/i/our_smilies/confused.gif

http://petoftheday.com/i/our_smilies/eek.gif Me BAD - I didn't scroll down far enough to see these two >>>

Here's Sam with "Barney" >>>

http://www.carepages.com/usr/G26254/P525094_FS.jpg



Sam in her cute glasses >>>

http://www.carepages.com/usr/G26254/P525095_FS.jpg


For some reason, all Sammy's "OLD Pix" keep being removed from the Gallery ...
don't know if there's a time limit - or WHY the older pictures vanish. http://petoftheday.com/i/our_smilies/confused.gif

Sam's Care Page HAS a "Photo Gallery" ... but the last time I tried to *link* to it ...
it didn't work ... you really need to be a "member" to see their stuff "directly".

Here's a few *links* to try >>>

Sam's Photo Gallery =
http://www.carepages.com/ShowPhotoGallery?seed=453023&ClusterNodeID=jb03&tlcx1=cincinnatichildrens&tlcx2=490925

Samm's HOME Care Page is =
http://www.carepages.com/ServeCarePage?cpn=Sammypotts&seed=589205&ClusterNodeID=jb03&tlcx1=cincinnatichildrens&tlcx2=490925

But I don't think they'll "work" - they're "cookie linked" to my puter.
I'll try to find the "How to Join" page ...

[Freckles]

Read posts 189 through 191. That explains how to get to Sammy's care page and view the pictures. (I think)

[Cinder & Smoke]

FOUND IT!! http://petoftheday.com/i/our_smilies/wink.gif

Here's how to set yourself up to "join" CarePages and be allowed to
"visit" Sammy's Pages ... GO TO >>>
http://www.carepages.com/cincinnatichildrens (http://www.carepages.com/cincinnatichildrens)

* Click on the "New Visitors & Returning Members" clicker box - upper right ...

* Fill in the correct ID which is SammyPotts
... capitalization doesn't matter - but the NO SPACE between Sammy and Potts DOES MATTER!

Then play along with the CarePage signup procedure ...
I can't take you any further - it jumps me past all the signup pages ...
because my puter shows up as a Member puter.

You DO need to cough up your e-mail address ... not sure what else.
Seems like a lotta Red Tape - but to be "legal" with all the HIPPA Regs -
they have to be careful and KNOW who's visiting the site.

http://petoftheday.com/i/our_smilies/eek.gif
Just thought about *ME* posting all the Info here on PT ...
sure HOPE Jessica doesn't mind that! http://petoftheday.com/i/our_smilies/redface.gif

PM me if you can't get signed up.

/s/ Phred

[cyber-sibes]

Thanks Phred & Freckles. Phred, those other two pics you posted are adorable - she looks very stylish & cute in her glasses. What a doll!

[BOBS DAD]

My Prayers Are With You And Your Family Johanna... And Especially Baby Samatha. God Bless You All And Stay With You By Her Side!!!

[Cinder & Smoke]

OMG! http://petoftheday.com/i/our_smilies/biggrin.gif

There's a BUNCH of New Oictures on Sam's Picture Gallery ...

"Posing with Cousin Jonah in our party hats.
It was Grandma's birthday!"

http://www.carepages.com/usr/G26254/P529581_FS.jpg



On the Merry-Go-Round with Daddy >>>

http://www.carepages.com/usr/G26254/P529559_FS.jpg


"Hey - This One's a lot BIGGER!"

http://www.carepages.com/usr/G26254/P529515_FS.jpg

And there's a lot more pix on Sammy's Care Page.

TRY to look at >>>
http://www.carepages.com/ShowPhotoGallery?fs=454072
but you may have to "join" and then sign in on "SammyPotts" Care Page ...
see the How to Join links in the previous post.

Once you get on the SammyPotts pages - use the left column menue to
select "Photo Gallery" to see the current thumb nails -
*click* each one to see a larger photo.

Stand by for Christmas Photos!!

Hey Sammy -
Hang up your Stocking - I'll bet Santa has some Great Gifts for you!!

:D

[slick]

http://www.carepages.com/usr/G26254/P529614_FS.jpg

Just look at this picture. Is that not the sweetest ever??? Phred, thank you so much for resurrecting this thread. I do think of Sammy and include her in my prayers. Never again will I complain of a little pain. :o

[cassiesmom]

My Prayers Are With You And Your Family Johanna... And Especially Baby Samantha. God Bless You All And Stay With You By Her Side!!!

From Chicago too

[Dorothy39]

This Thread , especially the up date, made me want to pick her up and give her a Bear Hug ~ All over again.

She's such Beautiful Child !!!!

[Cinder & Smoke]

http://petoftheday.com/i/our_smilies/smile.gif

Monday, December 11, 2006 at 06:55 AM EST

Happy Holidays. Sam loved Halloween this year, and wanted to trick-or-treat every night for nearly a week afterwards. We'd try to distract her, but she usually wound up throwing a fit.

PT continues to go well, and her therapist is considering trying a new walker w/her (called a "reverse walker"), to see if that will help her stand up straighter.

Her hearing test was fine; she'll continue to have those every 6 months, as that is standard for kids who had meningitis.

She started two new kidney meds, but one raised her potassium, so they stopped that; the other is to preserve kidney function. Her labs are about the same, but not as good as they were a year ago; kidney function is not improving at all, in other words. A new blood test they can do now puts Sam's estimated kidney function at @25%. This was not happy news to hear, but not totally unexpected, as Sam's illness was so serious. Kids can keep cruising for years on that level without extra intervention, but may also require dialysis or a transplant sooner than that; with that in mind, I had a cat scan done last week to evaluate my kidneys, as that is the first step for a potential donor work-up. It was my idea to go ahead and do that--this is not an urgent issue that the docs are pushing. I just want as many ducks in a row as possible in the event that things go downhill kidney-wise.

Sam also had some elevated bp for a while, but that has since resolved.
We go back to kidney clinic in January.

In other, cuter news, Sam can say the Pledge of Allegiance, and sang her heart out at her preschool Christmas show; she missed it last year, so we were really excited to see her in it this year. Dave & Karen and their staff did such an amazing job putting the pageant together. It was just another reminder of how fortunate we are to have Sam in their care while we're at work.

Sam sees the eye doc this Saturday, and will hit both Shriner's hospitals early in the year as well.
I've posted a few new pics, and will put some of her Christmas photos up soon as well.

Thanks for keeping Sam in your thoughts and prayers!!
Jessica

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

Wow!
Busy lil girl lately!!

Have a GRREAT Holiday, Sammy!!!

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

[Cinder & Smoke]

Monday, December 25, 2006

There's no Christmas Message from Mom Jessica, yet ...
But we did discover a few new *snappies* in the Photo Gallery:

Santa came to the Library ... Miss Sammy got some Lap Time with Santa >>>

http://www.carepages.com/usr/G26254/P599889_FS.jpg



Mom Jessica, Sammy, Dad Rob ~ The Potts Family - December, 2006

http://www.carepages.com/usr/G26254/P604190_FS.jpg



A "Smiling Sam" - December, 2006 >>>

http://www.carepages.com/usr/G26254/P604191_FS.jpg


Here's wishing that Santa Klawz brings Sammy a bagfull
of Good Health and Happiness for the New Year - 2007.

http://petoftheday.com/i/our_smilies/biggrin.gif

[ramanth]

Love those pig tails!! :D

Merry Christmas Sam!

[Cataholic]

Her pig tails remind me of waterfalls. When she moves, they shimmy a little bit, too! She was all over the place yesterday, into toys, toys, and more toys. She did sing a little for us, too, nearly falling off the chair in her holiday exuberance! Jingle Bells was quite a hit!

[ramanth]

How wonderful to hear. :D

[Barbara]

Oh Miss Samantha- you look all grown up!
Not having seen you for some months makes so much of a difference.
What a pretty and smart girl you are :)

[Killearn Kitties]

No video of Jingle Bells for us? :D :D
These photos are lovely. I hope Samantha has a happy and healthy 2007!

[Dorothy39]

I was excited to see an up-date about Little Sammantha~( Sammy Lou Who :D )


Thank-You, Cataholic , for describing her Christmas Glee for us!!!!

She is so *Sweet *:o

[angelchampy]

My prayers are with the little angel. God bless them all. Please keep us updated.

[wolflady]

She is so cute! I love those little pig tails too! ;) I'm so glad that she had a good Christmas and entertained everyone with her singing. *chuckles*

I wish all the best for Sammie in the new year! She's such a brave and strong little girl!

**hugs**

[Cinder & Smoke]

Tuesday, December 26, 2006 at 11:09 AM EST

Merry Christmas! I've added some pics.

Sam had a wonderful Christmas, and Santa brought her all kinds of neat stuff.
The best gift she received, though, was CHRISTMAS AT HOME!!!

"Yep ... Set it up, Daddy!!"


http://www.carepages.com/usr/G26254/P617741_FS.jpg


In other news, her BP is elevated again, so they've added a med (sigh) and hopefully that will take care of it.

Her eye doc appt. was fine, though Sam was a little confused ...
the chair looks exactly like the dentist's chair, so when I put her in it,
she immediately opened her mouth really wide, and shut her eyes!
Her doc laughed.

She's trying to get used to her new walker, but we're hanging on to both of them while we figure out which style will work better for her.

That's about it for now.
Happy New Year!
/s/ Jessica

"Look at all these grandkids! That's everyone except the two grown ones, who have been upgraded to aunt & uncle status."

http://www.carepages.com/usr/G26254/P617717_FS.jpg


"Do you like my new Doll?"

http://www.carepages.com/usr/G26254/P617718_FS.jpg


"My new Manger set ..."


http://www.carepages.com/usr/G26254/P617726_FS.jpg


"The only Horse I'm allowed to have in my house."

http://www.carepages.com/usr/G26254/P617727_FS.jpg


And there's more Christmas Photos on Sammy's Care Pages / Photo Gallery.

I'd wager Sam has One of Everything availabe at Toys-R-Us!!
ENJOY, Sammy!!

INSTRUCTIONS on How to Join Sammy's Care Page and View her Photo Gallery
are in Post # 962 - Dated 10/16/2006 - a couple pages back.

[kimlovescats]

It's so wonderful to see little Sammy enjoying her Christmas at home! What a special little girl she is!

Hugs!
Kim

[Dorothy39]

Will you ever cease to amaze us Sammantha!!!!!!

( You sat in the Doctor's chair and opened wide!!!! )

What Spirit, what Spunk~

Oh, and the look in her eyes as she shows us the New Doll~

What a Christmas Morning!!!!!

[Cinder & Smoke]

>Bumpity-Bump< http://petoftheday.com/i/our_smilies/wink.gif

[Randi]

It's wonderful to see Sammy at home, enjoying Christmas so much - what a trooper she is! :)

Just look at her expression holding that doll - and telling daddy what to do next, setting that thing up. LOL! Sitting on Santa's knee was a hit too, I imagine. :D

Here's to a Happy and healthy New Year for sweet little Sammy!!

[momoffuzzyfaces]

Looks like Santa was really good to Sammy! But then, he knows really special children when he sees them!!!

Happy and Healthy New Year Sammy!!! :D

[slick]

Just look at this face....
Sammy, you inspire me. I love your smile and it warms my heart. I will never again complain about my insignificant aches and pains.

{{{hugs}}} to you sweetie.

http://www.carepages.com/usr/G26254/P604191_FS.jpg

[Cinder & Smoke]

Thursday, March 08, 2007 at 06:09 PM EST

Sam is 4!!! Hard to believe.

She's doing pretty well, and had a pretty healthy winter.
Her kidneys are doing about the same; we go back for labs later this month.

We visited both Shriners' Hospitals last month;
her skin looks good, and they were pleased w/her prosthetics progress in Lexington. The docs there agree that the new walker was a good choice.

Sam's working hard in PT, and now can get around on her legs,
using her walker, pretty much by herself.
Sam's still enjoying herself in preschool as well.

We're all just waiting for spring, so we can get out a little more!
Thanks for keeping Sam in your thoughts & prayers.

/s/ Jessica

PS: See gallery for new pics.

(I'll see if I can drag a few of the *snappies* over here to Pet Talk.)

[DrKym]

Just seeing this thread!

Our familys prayers and thoughts, keep up the good work Sammy and Happy Birthday angel!!

The Goodnows

[Cinder & Smoke]

The Birthday Girl >>>

http://www.carepages.com/usr/G26254/P713872_FS.jpg



PT with Kate ~ "This is FUN!!"

http://www.carepages.com/usr/G26254/P713871_FS.jpg


"Posing with my new Raggedy Ann & Andy."

http://www.carepages.com/usr/G26254/P713875_FS.jpg


Happie Birthday, Sammy!!

[Dorothy39]

Oh, Thank-You for sharing more "snappies"( ;) ) of Dear Sammy!!

She is so full of positive spirit and determination~

Happy 4th Birthday Sammy !!!!!!!!!

[kimlovescats]

Happy Birthday sweet girl!!! :D

[anna_66]

Sounds like things are going pretty good!

Happy Birthday Sammy!!!!!

[cassiesmom]

Beautiful Samantha! Happy Birthday to You! p.s.: I really like your pig-tails.

[cyber-sibes]

http://img.photobucket.com/albums/v432/cyber-sibes/blinkies/graphics1.gif :) Happy Birthday Sammy! :)
Aren't you the cutest Birthday Girl with all those pretty ribbons in your hair!

[Marigold2]

Sending prayers and good wishes.

[Daisy and Delilah]

HAPPY BIRTHDAY SAMANTHA!!! What a perfect little doll you are. I'm so glad to see and hear that you're doing so well :)

[gini]

Happy Birthday little sweetcakes - you are an inspiration to us all.

[Barbara]

Happy Birthday little Samantha :)
I am so glad to see you growing and fighting, brave little girl :)

[ramanth]

Happy belated Birthday Samantha!!! :D You're looking good. :)

[slick]

Been thinking of you this weekend sweetie!! I hope you had a nice Easter and that bunny hid many goodies for you to find! So sorry I missed your birthday. Looks like you had gobs of phun!

Any updates???

[slick]

Bump.

Been thinking of you Samantha and keeping you in my prayers.

Still looking for updates.

[DJFyrewolf36]

Im still amazed at all the Miricles surrounding Sammy...and am amazed at how well she is doing now :D She is such a cutie!

[Cinder & Smoke]

May 28, 2007 at 07:00 PM EDT

Happy Memorial Day!
Sam had a nice spring and is ready for summer.

Her last two kidney checks showed no major changes, and she continues to make lots of progress in PT. Kate came to the school for a session, and showed Sam's teachers what kinds of things Sam can do w/her prostheses on. I can't tell you how wonderful it is to have the support of Sam's preschool; she's made so much additional progress wearing her legs for part of each school day, too. This means extra work for the staff, and their willingness to do this means so much.

She had her biannual hearing check, and it looks like it's now safe to say she won't suffer any hearing loss from the illness (a common result of meningitis), so that's good news.

Sam's jabbering away every day, and talking in complete sentences; she also sings constantly.

This past Mother's Day marked 2 years since the onset of her illness, and Sam has continued to amaze us with her recovery.

Oh, and Barney and the Wiggles finally have some serious competition--Blue's Clues! Maybe Cousin Buddy can finish this sentence for us: "Blue Ska-doo..."

Hope everyone had fun kicking off their summer this weekend. Thanks for keeping Sam in your thoughts and prayers.

Jessica

PS New pics in gallery.
-----------------------------------------

Happie Summer, Cutie Pie!!

Progress, Progress ... nuffin but Progress! http://petoftheday.com/i/our_smilies/smile.gif

Here's a couple of the *snappies* ...

"Standing in the Kitchen >>>

http://www.carepages.com/usr/G26254/P832439_FS.jpg



"Cheeze ..."

http://www.carepages.com/usr/G26254/P832451_FS.jpg




"OK, Mommy ~ I;ll look at you (& the camera)" http://petoftheday.com/i/our_smilies/tongue.gif >>>>

http://www.carepages.com/usr/G26254/P832496_FS.jpg




The construction continues ... "HI, Daddy!"

http://www.carepages.com/usr/G26254/P832464_FS.jpg