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richfed
Sachem
USA
Bumppo's Patron since [at least]:
May 13 2002
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 Posted - March 15 2003 : 6:52:04 PM
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L-O-L-L-Y-P-O-P Therapy!
Not kidding! It's come to this!
After months & months of every procedure, every test, every [it seems] surgery, every medicine - words with Latin origins - long words, most of which I can no longer remember - consultations, recommendations, research, crying, praying, pleading, considering a transfer, almost dying ... after all those things, and more, it has come down to this. It really has.
L-O-L-L-Y-P-O-P Therapy!
In order to make her "oral experience" - mostly all extremely negative to date, between tubes & probes & probably mostly her reflux - more positive ... the object being to encourage more drinking of the bottle to avoid this darn surgery ... she's now being given suckers! You should have seen her eyes at first taste! {without the coffee} ...
Anyway, believe it or not, it's working! The no-longer-not-so-little lass is now up to a whopping - for her - 6lb. 4oz.!!!
L-O-L-L-Y-P-O-P Therapy!
Well, I'll be!
As always, a very fluid situation, subject, and likely, to change, but here's the probable prognosis for the immediate future:
She probably won't have the surgery involving the placing of stomach tissue around the valve to the esophagus to control the reflux; probably will get a G-tube - enabling us to ensure she always gets full feedings once home, among other reasons. An Ear, Nose, and Throat specialist examined her, and after some deliberation over a few days, has decided to go down there, exploratorily [word???], and possibly remove a polyp or two, if necessary. Doing so will also improve her oral associations as well as allowing her to "speak" a bit more easily. This is scheduled for this coming Tuesday.
Definites - as mentioned somewhere above - her brain scan came back 100% perfect. Plus, she just had an extensive workup on her bone development - a source of concern with undernourished babies - and she aced it!
No word yet on homecoming, but it appears to be approaching.
L-O-L-L-Y-P-O-P Therapy!
Hmmmm .... pass me one of those!
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Theresa
Bumppo's Tavern Proprietress
USA
Bumppo's Patron since [at least]:
May 17 2002
Status: offline
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Posted - March 15 2003 : 10:27:48 PM
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Hey Rich,
Does she have a favorite flavor? This is so amazing to me. Who'd a thunk it? Things sound as though they are progressing quite well. Thank you so much for keeping us updated and as always we're thinking of you. Prayers sent up daily and a little extra on for Tuesday. |
Theresa |
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Wilderness Woman
Watcher of the Wood
USA
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November 27 2002
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Posted - March 16 2003 : 12:56:24 PM
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Go figure! I wonder which highly-educated, deservedly well-paid specialist came up with that amazingly simple solution??
Kisses for Sophia! |
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securemann
Deerslayer
USA
Bumppo's Patron since [at least]:
July 08 2002
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Posted - March 16 2003 : 7:19:23 PM
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| Just like the old song goes: Lollypop,lollypop,oh,lolly,lollypop. Great news! |
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Cherie
Colonial Settler
USA
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July 02 2002
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Posted - March 17 2003 : 10:16:47 AM
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Wilderness women.... I believe those Highly-Educated specialist are......KIDS!!!!!...
Rich you and Lainey will be rewarded LARGELY for all you have been through. And not just with Sophia but with all you do. |
Support our Country, our President and our Troops |
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Christina
Deerslayer
USA
Bumppo's Patron since [at least]:
May 27 2002
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 Posted - March 17 2003 : 10:36:35 AM
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Rich, it's hard to believe but sometimes the BEST therapies come out of the simplest things around us! I am SO happy to hear this and know that prayers for Sophia are still going up all over the place!!! Pass those lollipops! (Kojak had it right all along...)
me, I'd like a strawberry one please! 
Christina
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See this face? This is the face of a woman on the edge.
Whoopi Goldberg, "Jumping Jack Flash"
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richfed
Sachem
USA
Bumppo's Patron since [at least]:
May 13 2002
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Posted - March 18 2003 : 05:41:51 AM
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quote:
Originally posted by Wilderness Woman
Go figure! I wonder which highly-educated, deservedly well-paid specialist came up with that amazingly simple solution??
Kisses for Sophia!
Through all the haze & daze, it seems to me that it was a RN who suggested this route! |
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caitlin
Bumppos Tavern Patron
USA
Bumppo's Patron since [at least]:
May 17 2002
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Posted - March 19 2003 : 10:15:53 PM
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Dear Rich & Elaine,
Again, it is such great elation to hear of your daughter's progress! A bright spot in our troubled times. As far as the RN, what wonderful ingenuity on their part. You are blessed to have such caring and professional nurses with your beautiful daughter. I know from personal and related experiences, that hospital situations going from bad to better, or bad to worse are largely dictated by the knowledgable and caring staff at hand. My family looks forward to hearing of Sophia "going home"!
as always,
your friends,
Caitlin & family
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Jack McCall: "Should we shake hands or something, relieve the atmosphere. I mean how stupid do you think I am?"
Wild Bill Hickok: "I don't know, I just met you."
"A nation with no regard to it's past will have little future worth remembering."
A.Lincoln
"Enjoy the little things, for one day you may look back and realize that they were the big things"
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richfed
Sachem
USA
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May 13 2002
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Posted - March 21 2003 : 05:41:59 AM
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Ok ... so her Tuesday "surgery" turned out to be a non-surgery. They looked down there & found nothing to remove. No polyps. One of her vocal cords, however, is paralyzed, but that comes as no surprise. She can barely make sounds, a result of too many tubes - for too long - down her throat. So, she cannot cry. Sounds like a blessing, but in reality, of course, it makes her "alarm system" dysfunctional - all the more reason she'll need to be on a monitor or two when she finally comes home. This condition, supposedly, will probably resolve itself within 6-8 months.
So, anyway, she had a barium test done on Wednesday to see just what was happening when she swallowed. On occasion, the regurgitation would come near to going down her windpipe ... not too desirable.
Yesterday, the poor dear spent 12-24 hours with a tube down her throat to measure PH levels ...
Based on the results of these two tests - expected today - she will have either the reflux-controlling esophagus surgery or the G-tube "implant" ... or both ... and probably sometime next week.
The good news here is that - or, so they say - she can then come home - just a couple of days later if she only has the G-tube, one-two weeks if she has the other.
Up to 6lb. 10oz. and doing well in every way, except what's mentioned above, more or less.
We're supposed to have a family room visit on Sunday, as part of the going home preparation. Right now, I feel a fever/sore throat coming on ...  ... I had better not get sick!!
That's the latest in the never ending, ever changing, story! |
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Theresa
Bumppo's Tavern Proprietress
USA
Bumppo's Patron since [at least]:
May 17 2002
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Posted - March 21 2003 : 07:23:30 AM
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| Thank you for keeping us informed about Sophia. We all love her and are hoping and praying for her to come through all of this with flying colors and hopefully will be home soon. |
Theresa |
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Pen
Colonial Settler
Bumppo's Patron since [at least]:
February 03 2003
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Posted - March 21 2003 : 1:16:53 PM
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Hi, Rich!
Thanks for the update. Sophia's in my prayers, as are all of you...and I hope you get well soon!
Pen |
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richfed
Sachem
USA
Bumppo's Patron since [at least]:
May 13 2002
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Posted - March 23 2003 : 07:00:41 AM
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quote:
Originally posted by richfed
... So, anyway, she had a barium test done on Wednesday to see just what was happening when she swallowed. On occasion, the regurgitation would come near to going down her windpipe ... not too desirable.
Yesterday, the poor dear spent 12-24 hours with a tube down her throat to measure PH levels ...
Based on the results of these two tests - expected today - she will have either the reflux-controlling esophagus surgery or the G-tube "implant" ... or both ... and probably sometime next week.
The Final Hurdle?
Finally?
Maybe.
After 19 hours of probing, it was determined that Sophia will need the full surgical procedure mentioned above. She refluxed 117 times in that span, sometimes quite severely, for as long as 25 minutes at a time.
So, this coming Wednesday morning, Sophia will undergo what we hope is her final surgery.
Recuperation should be swift, and we expect her to be home in one to two weeks after the surgery.
Pray that it is so. |
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Adele
The Huggy Merchant
Bumppo's Patron since [at least]:
May 17 2002
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Posted - March 23 2003 : 09:42:52 AM
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quote:
Originally posted by richfed
quote:
Originally posted by richfed
... So, anyway, she had a barium test done on Wednesday to see just what was happening when she swallowed. On occasion, the regurgitation would come near to going down her windpipe ... not too desirable.
Yesterday, the poor dear spent 12-24 hours with a tube down her throat to measure PH levels ...
Based on the results of these two tests - expected today - she will have either the reflux-controlling esophagus surgery or the G-tube "implant" ... or both ... and probably sometime next week.
The Final Hurdle?
Finally?
Maybe.
After 19 hours of probing, it was determined that Sophia will need the full surgical procedure mentioned above. She refluxed 117 times in that span, sometimes quite severely, for as long as 25 minutes at a time.
So, this coming Wednesday morning, Sophia will undergo what we hope is her final surgery.
Recuperation should be swift, and we expect her to be home in one to two weeks after the surgery.
Pray that it is so.
Feels like a whole STACK of people here have been waiting the homecoming.....can't wait for the happy day!
HM |
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Wilderness Woman
Watcher of the Wood
USA
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November 27 2002
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Posted - March 23 2003 : 10:15:15 AM
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quote:
Originally posted by richfed
... Pray that it is so.
You betcha!
A kiss for Sophia... for being such a little Warrior! |
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Christina
Deerslayer
USA
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May 27 2002
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Posted - March 24 2003 : 2:36:11 PM
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Rich, SO glad to hear this latest news!  Prayers and thoughts are still going skyward for the brave little one! Here's hoping all goes well...
Peace,
Christina |
See this face? This is the face of a woman on the edge.
Whoopi Goldberg, "Jumping Jack Flash"
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Wilderness Woman
Watcher of the Wood
USA
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November 27 2002
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Posted - March 26 2003 : 6:57:37 PM
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I think Sophia's surgery was this morning??
I'm waiting with bated breath to hear how it went. Sure do hope she is OK. |
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Theresa
Bumppo's Tavern Proprietress
USA
Bumppo's Patron since [at least]:
May 17 2002
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Posted - March 26 2003 : 7:04:45 PM
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quote:
Originally posted by Wilderness Woman
I think Sophia's surgery was this morning??
I'm waiting with bated breath to hear how it went. Sure do hope she is OK.
I think you're right, W.W. It sounded pretty extensive so it could be a timing factor. I'm sure we'll hear something when those tired parents get home and feel like telling us. 
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Theresa |
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Wilderness Woman
Watcher of the Wood
USA
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November 27 2002
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Posted - March 26 2003 : 7:16:00 PM
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Yeah, you're right, Theresa! I know they will update us as soon as they can. It just suddenly hit me that this was the day.
BTW... I just discovered that Rich had posted a new photo of Sophia! I don't remember him mentioning that. This one is dated March 11th. If you guys haven't seen it, go to Rich's photo album and check it out! It is So-o-o-o cute!! The look on her face.... |
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Theresa
Bumppo's Tavern Proprietress
USA
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May 17 2002
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Posted - March 27 2003 : 12:57:29 AM
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| Thanks for directing me there, W.W. She looks so good and almost like she's saying something with those eyes. Hopefully we'll hear something soon. |
Theresa |
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richfed
Sachem
USA
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May 13 2002
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Posted - March 27 2003 : 05:43:01 AM
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Sophia on "Family Day"
This past Sunday:
Sophia, held by Miriam, with many of her siblings. Woman in back [holding Isabella] is the Angel of angels, her primary daytime nurse, Sonya ... Other kids are Olivia, Daniel, and Elizabeth ...
OH! Surgery. Both procedures [G-tube for feeding & the tying up of the valve between her stomach & esophagus to control reflux] were accomplished yesterday without a hitch. Surgeon said it, "went by the book." So, we believe, Sophia is ... finally ... all fixed! Can you believe it?
She needs some pain killer & was zonked last time I saw her, but she is expected to recuperate quickly, with feedings resuming as early as tonight. By the end of this weekend, she ought to be good as new, and ... they say ...
SHE MIGHT COME HOME NEXT WEEKEND! |
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Theresa
Bumppo's Tavern Proprietress
USA
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May 17 2002
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Posted - March 27 2003 : 07:06:29 AM
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| Thanks for the photo, Rich. All sounds great and hoping she gets to come home to her family this weekend. Is everybody ready? |
Theresa |
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Wilderness Woman
Watcher of the Wood
USA
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November 27 2002
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 Posted - March 27 2003 : 07:59:35 AM
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Wonderful!!
BTW... your other children are beautiful, too!
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securemann
Deerslayer
USA
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July 08 2002
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Posted - March 27 2003 : 1:52:46 PM
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Wow, I can remember when Lainey was holding Miriam like Miriam is holding Sophia here! Miriam was the last Federici offspring seen by us. Your other children are beautiful.Great picture and we are very happy with the news about the little one.
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Bea
Keeper of the Western Door
Canada
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May 18 2002
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Posted - March 27 2003 : 2:25:29 PM
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I am very happy to hear the good news!!I can't wait to see a pic of the whole family reunited!
I am amazed how your kids have grown! Miriam looks so grown-up and I still remember pics of Isabella when she was just a wee one..You guys are sure blessed with wonderful kids!!
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richfed
Sachem
USA
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May 13 2002
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Posted - March 30 2003 : 06:17:18 AM
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Well, let's see ... what's there to report on the little bugger today? Hmmm ... well, she's over 7lbs. now. Well over. She, as they told us she would, quickly recovered from her surgery on Wednesday ... tylenol was all she needed for pain after about 24 hours. The incision is healing quickly & nicely, and she's eating again. Off all respiratory apparatus. Off all meds. ALL meds! Her only intake, other than formula, is an iron supplement. That's about it. Oh, her eyes are fine. She's thriving!!! It's boring, I know, but we'd have it no other way.
So, that's it.
OH! Except for one little, teeny, weeny particular ...
SHE'S SCHEDULED FOR DISCHARGE THIS FRIDAY!!!!
Hallelujah!!! Friday, April 4, 2003 - a mere 3 days short of 6 months in the hospital, she can come home! BUT, as punishment for putting us through this ordeal, we're leaving her there till Sunday, April 6 ... one week from today. Actually, we'll be doing her a favor ... 2 more days of peace & quiet! Little does she know what she's in for when she gets here!
Seriously, we're leaving her there till the weekend so all can be home when she gets here; till Sunday because Sonya, her primary RN, is off on Saturday. She deserves to say goodbye.
This still hasn't sunk in ... but Thursday we'll get our CPR, G-tube feeding, monitor training and then it'll all be over! Finally! Over! Her story is going to have a happy ending after all, one that just didn't seem to be in the cards back in January.
I'll being taking several weeks of Family Medical Leave off from work, beginning late this week, to help care for the little critter.
Thank you God, for answering my prayers ...
And thank all of you who have likewise prayed and/or expressed your sympathies & well-wishes in this thread. Your kindness & sensitivity on this matter will never be forgotten by me. Every one of you has earned a special place in my heart, and someday, your loving words will be read by little Sophia. Can you believe it?
I wonder what she'll think?!?
"Man, my folks were weird!" |
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Yes ... One More! ... The Sophia Story!
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