Good thoughts for you and your family, Sammy... Hope you enjoy your Christmas... I'm sure that Santa will come for you...
Good thoughts for you and your family, Sammy... Hope you enjoy your Christmas... I'm sure that Santa will come for you...
I hope you have a great Christmas Sammy! Enjoy your presents. :D
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.
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
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Wishing Sammy, Jessica and Rob a Joyus Christmas!
Sing it again, Sammy ... "Jingle Bells, Jingle Bells ..."
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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. :)
Christmas Day, December 25, 2005 at 06:26 PM EST
Merry Christmas, everyone. Sam slept late again,
but woke up in time for Grandma's visit,
and Mom and Dad had a nice Christmas dinner. S
Sam's a little quieter today, but still alert, and
smiling away at her Barney videos.
She opened a few gifts today, but still has gifts waiting at home for her
to enjoy when she's fully recovered.
They put the feeding tube back in today, and will start the feeds later;
we really couldn't wait any longer, and the nutrition is critical to her recovery.
Hopefully this will be short-term, and that once whatever throat issue
she has resolves, she'll eat again.
She still drools during the day, but we've noticed that when she's sleeping,
she's swallowing. It's possible there's a psychological component at work here,
and once she's home and more relaxed in her normal environment,
she can get back to "normal" things.
The immunologist stopped by, but he said he probably won't have more
results until mid-week; he also let us know he'll be consulting
w/the genetics dept. re: a chromosome study.
It's possible we'll move back to the floor tomorrow.
Hope everyone's holiday was happy;
thanks for all the Christmas wishes for Sam!
Jessica
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Thanks God, for sending Santy Claws to Sammy's room!
http://petoftheday.com/i/our_smilies/smile.gif
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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.
Monday, December 26, 2005 at 01:37 PM EST
We're back in A6 South.
Sam is tolerating her feeds well, which is good;
this will help get the belly back in gear.
Her BP is still running a bit high at times, so she's getting some meds
for that -- it's likely kidney-related.
Her mental status continues to improve daily.
Her antibiotics are finished, so the central line will be coming out soon;
right now they're still using it for some meds, so she doesn't have to
take them all orally, which would probably make her vomit.
And yes, Chantelle, tell Quinlan that Santa is amazingly flexible --
Sam has gifts waiting at home, plus received some here,
including a couple Barbie dolls, a big Pooh bear, miniature horses,
Weebles, cars, books, an outfit, and Lego Mega blocks.
Let's hope Sam has a short, uneventful stay in Building A,
so we can go home.
Thanks,
Jessica
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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!
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Saturday, December 27, 2005 at 07:28 PM EST
Sam continues on that road to improvement;
she's much more alert and responsive now,
though still not quite back to her usual SuperSam self.
She greeted me w/a "Hi, Mom," when she woke up today at the crack of noon.
(I'm not sure if she's now calling me "mom,"
or if she's only doing half of "mama" during her recovery phase!)
No big news on the immunology front;
the complement part he was looking at checked out normal,
and other results aren't in yet, due to the holidays.
The genetics dept. is now in the game
(will there be a dept. we don't see in Children's?? )
and will be sending some bloodwork out of state for more tests --
there's a doc in Colorado, I think, who's going to take a look.
(They will be checking to make sure this isn't a certain subtype
of her platelet defect that's linked to immune system problems.
The doc at the NIH doesn't think it is. Anyway ...)
Her central line should come out tomorrow morning,
after everyone's had a chance to draw their labs.
She's tolerating the feeds really well, so she will go home on the tube
for a while, until we get her eating again.
She's drinking a little by cup.
She's allowed out of her room now, so we brought her stroller up,
and take her downstairs a lot ... nothing really exciting down there,
but it sure beats this room!
We're really hoping to be out of here before '06,
so think some happy new year thoughts for us.
Thanks,
Jessica
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*Home* for New Year's sounds good ...
We'll ask God to try to schedule that for Sammy! ;)
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.
Ok, Sammy now we try to concentrate on New Year's eve! One step after another- and you come a long way :)
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!
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
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We'll all Pray that Sammy is HOMEward Bound tomorrow!
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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!
:)
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
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HOME, Sweet HOME!!
:D
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Sammy! Way to go! :D :D :D
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! :)
What wonderful news, I'm so happy for you all!
This is wonderful news!!!! :D
Yeah Sammy!! May 2006 be a Happy and HEALTHY new year for you!!!
I hope you have fun filled days and your health is steadily improving.
Love from Camp Vermont
:)
I hope this New Year 2006 will bring you health, Sammy!
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
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?
Honeycombs, hotdogs and Cheetos! :D Sounds like a good snack to me :D Lord love you Sammy.. and so do we.
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. :)
Quote:
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.
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.
Hope she is thriving.
Good vibes coming from Camp Vermont! :)
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 :)
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.
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!
Catahoilic thanks for the up date. I am keeping it posted here while Phred is unable too.
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.
Oh, good luck with that, Sammy!
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! ;)
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.
Sammy will never be forgotten - so small but so brave, she is an inspiration!Quote:
I want to bump this up. With all the attention on Phred, I didn't want little Sammy to be forgotten.
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.
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