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Wilderness Woman
Watcher of the Wood
USA
Bumppo's Patron since [at least]:
November 27 2002
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 Posted - February 23 2003 : 12:38:50 PM
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Most definitely, we want to keep hearing this! Many of us are parents, and Sophia touches our hearts so deeply...
Besides, I think we all like a good old-fashioned miracle now and then! And she is a miracle. |
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Chris
Colonial Settler
USA
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May 25 2002
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 Posted - February 23 2003 : 2:17:24 PM
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Oh, man, Lainey!! It sounds like Earl's family growing up (12 kids). If it wasn't one kid doing something, it was another! Keep an eye on that cough/fever. We've had it up here, and I've been sending kids home from school by the dozens. They've had to hospitalize both kids and adults with pneumonia.
No idea where your rash came from? Stress maybe? Do take care of yourself too. You always seem to be at the bottom of your list of cares.
We love you. Chris |
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Pen
Colonial Settler
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February 03 2003
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Posted - February 23 2003 : 2:19:06 PM
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Hi, Lainey,
Yes, more!!
I'll be offlist for a few days (and not near a computer) beginning on Tuesday, so I won't be able to check the posts, but I will be looking forward to them when I get back on Sunday. See you all then!
Pen |
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richfed
Sachem
USA
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May 13 2002
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Posted - February 24 2003 : 05:47:13 AM
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Talk about peaceful bliss ... the question: For her, or for ME!?!?
With Lainey out of commission, looking much like she was in a car wreck, I got to hold Sophia for 3 full hours yesterday! OOOOOOOOOOOOOOOOOH, boy! I had not a care in the world during that span. She refused to go to sleep, and stayed awake the entire time. What eyes!
Talked with the nurse, nurse practioner, and doctor ... "Going home" was mentioned more than a few times! If she can just stay the course ...
She looks wonderful!!!! |
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Diane B.
Colonial Militia
USA
Bumppo's Patron since [at least]:
May 19 2002
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 Posted - February 24 2003 : 06:30:58 AM
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Well, Rich, it sure sounds like you & little Sophia had quite a remarkable time together yesterday! How wonderful it is to read of her continued progress!  I pray that she is soon able to go home & be with the rest of her loving family. Rich & Lainey, you two continue to take good care of yourselves, as well - and thank you so much for sharing Sophia and her remarkable story with the rest of us! |
Rattlesnake Woman
"The earth does not belong to us; we belong to the earth." - Chief Seattle
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Lainey
TGAT
USA
Bumppo's Patron since [at least]:
May 18 2002
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Posted - February 24 2003 : 08:34:04 AM
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quote:
No idea where your rash came from? Stress maybe?
Domestic Terrorism. 
Yesterday I looked JUST like Mike Tyson. Today I look like Mike Tyson's opponent. I needed a new look anyway ...
quote:
I think we all like a good old-fashioned miracle now and then!
Yeah, we all do need these little miracles, don't we? The little miracle is weighing 5lbs 11oz & getting a musical bouncing seat to play in today.
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"Fides et Ratio" |
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Stephanie
Gathering Sachemess
USA
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June 23 2002
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Posted - February 24 2003 : 10:53:49 PM
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Yeahhhh! Glad to hear the good news about Sophia! Keep that good news coming!!! Have you considered making a hard copy of this topic and saving it for her, so someday she will know how many were praying for her? (And the Mohicanites represent only a fraction of that number I'm sure.)
Don't worry too much about the voice. When she gets home, I'm sure little Sophia will find her voice, living among the other children. She will soon learn that if she wants something, she'll have to be HEARD!!!  waaaaaahhhh waaaahhhhh!!
Lainey, I have had hives brought on by stress before but of course there can be many causes, and sometimes the cause is never known. I have also found that red food dye causes me to get hives, so I avoid that at all costs! I don't know how you feel about prescription meds, but Zyrtec is wonderful, clears it up very quickly without drowsiness!
Take care of yourself!
Love,
Stephanie |
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richfed
Sachem
USA
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May 13 2002
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Posted - February 25 2003 : 05:18:36 AM
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quote:
Originally posted by Stephanie
Have you considered making a hard copy of this topic and saving it for her, so someday she will know how many were praying for her? (And the Mohicanites represent only a fraction of that number I'm sure.)
Ok,  Steph ... You reading my mind??? ... Interesting story, isn't it! 
Yesterday, someone from this board passed along a print that I [and she] thought was very appropriate for Sophia's Story. I commented that I would like to post it here, as I was just thinking of - when all is said & done - printing this all out and saving it for when she gets older - a keepsake and record of her travails. [Waiting to hear from the artist if that'd be ok]
Yes, indeed. We shall do that!
So, from this point forward, keep that in mind!
And, Steph, when you're done with my mind, please pass it back! I need the darn thing! |
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richfed
Sachem
USA
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May 13 2002
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Posted - February 25 2003 : 7:02:06 PM
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Held in His bosom during the days that we could not.
Sophia, our own, not-so-little, miracle!
Print courtesy of Keaton Prints |
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Cherie
Colonial Settler
USA
Bumppo's Patron since [at least]:
July 02 2002
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Posted - February 26 2003 : 12:17:39 PM
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| Oh Rich and Lainey... What a beautiful picture....For a beautiful story |
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securemann
Deerslayer
USA
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July 08 2002
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richfed
Sachem
USA
Bumppo's Patron since [at least]:
May 13 2002
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Posted - March 02 2003 : 07:29:33 AM
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Yep, it is - my favorite to date! 
Here's the latest on Sophia ..
There are 3 factors determining when she can come home:
- Her belly coming under control
- remaining stable
- drinking 100% of her milk via a bottle
Her belly seems to be on the mend - it was measuring 34cm, last I heard, smaller than it had been - and with no tapping in 3 weeks, or so - and, giving her no apparent discomfort. You can hold her over your shoulder now, and she even slept on her belly, so ... that's no longer a hold-up.
She has been very stable the last 3 weeks! And, she's now off all breathing apparatus & IVs. She's stable enough to come home!
She continues to drink some of her milk via bottle, but seems to tire, so the rest goes in through a tube down her throat. We got wind of the treatment team's upcoming proposal to operate on her to hook up a GI tube - feedings directly into her stomach - so that she could come home.
NO!
Nobody, of course, wants her to come home more than we do, but no more surgery on this battered body, unless it's absolutely necessary.
So, Elaine spent all day there yesterday feeding Sophia. The doctors agreed on a "by demand" feeding schedule, more or less ... let Sophia dictate the pace. The problem with that is that she has to have the nutrition at the recommended level, to cure her ascites ... so, the little critter had better cooporate! 
That's the hold up, right now.
She looks, and is doing, great! If she can drink all her milk regularly, it's looking like she will come home sometime this month!
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Diane B.
Colonial Militia
USA
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May 19 2002
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Posted - March 02 2003 : 09:29:00 AM
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What wonderful news, Rich! I certainly hope and pray that Sophia remains stable and continues to improve, and that you will have her home with you before month's end.
Thank you again for "sharing" Sophia and her story with all of us, and do continue to keep us posted on her progress! |
Rattlesnake Woman
"The earth does not belong to us; we belong to the earth." - Chief Seattle
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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 02 2003 : 10:14:12 AM
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This really sounds good, Rich. Can't say that I blame you guys for forgoing the surgery. She's been through so much already. We'll just continue to keep her (and you and Elaine) in our prayers...a powerful tool!
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Theresa |
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Wilderness Woman
Watcher of the Wood
USA
Bumppo's Patron since [at least]:
November 27 2002
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Posted - March 02 2003 : 6:15:44 PM
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| This is great news! I am so very happy for you! |
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Jo
Sweetser 4 Rep
Bumppo's Patron since [at least]:
May 27 2002
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Posted - March 04 2003 : 5:06:54 PM
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Very good news indeed; a nice birthday gift indeed!
Jo |
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richfed
Sachem
USA
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May 13 2002
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Posted - March 07 2003 : 06:10:35 AM
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... today is 5 months!
Things change oh-so-fast in this situation, from one day to the next, sometimes from hour to hour!
Let me first say that Sophia, generally, is doing wonderfully & looks great.
But, the caveat in all of this ... [always, it seems, there has to be one of those!]
She struggles to drink all of her milk via bottle - though she does sometimes - because of a severe reflux condition. Currently, she's on not one, not two, but three medications to control this, and still she suffers! This causes her to have a bad association with the bottle, obviously, but worse, it could cause her to asphyxiate, in the worse case scenario.
And so ... it would appear that a fourth surgery is in the cards - much to our chagrin - possibly as early as next week to correct this condition ... something about using part of her stomach lining to "plug" the valve that allows this stuff to come up. For at least several months after, she'll have a little plug in her abdomen that will allow us to allow her to vomit, basically, as she won't be able to naturally. Still not 100% sure on the long term effects of this.
So, if this comes to pass - as it appears it will - the prognosis is that she'll have several days recovery & then can come home.
That's what we're told, but it seems we've heard all this before.
Typically, Sophia does extraordinarily well through the procedure [whatever it may be] ... then struggles mightily. She's much stronger this time, though, so maybe she can pull through more easily. I just hate to give her another setback at this juncture, but it appears to be the only way to go ... 
Is this beginning to sound like a broken record?
More, when we know more ...
I'm just glad it's the weekend, almost ... will try to get an updated photo for her album.
OH! Happy Birthday, Sophia! |
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Cherie
Colonial Settler
USA
Bumppo's Patron since [at least]:
July 02 2002
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Posted - March 07 2003 : 08:33:14 AM
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| Her Strength comes from her family. Every day she's here with us is a special one. Be strong, Have hope and give love. |
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Wilderness Woman
Watcher of the Wood
USA
Bumppo's Patron since [at least]:
November 27 2002
Status: offline
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Posted - March 07 2003 : 08:42:58 AM
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Happy 5th-month Birthday, Sophia! 
Rich and Elaine... I really feel that she will come through this surgery with colors flying high! She is bigger and much stronger, as you say, and this does seem to be a fairly simple, routine procedure. I know you have already done your internet research, but I had to satisfy my own curiosity, and I found this site.
www.pedisurg.com/PtEduc/Gastroesophageal_Reflux.htm
You know... this made me think about my father's experience. I almost lost the chance to be on this earth, because he nearly died when an infant! He is 84, so he was born in 1918. Now just think about this: the medical technology field had only just come into the modern age. People were still dying in droves from the Flu!!
Dad was born after a normal, full-term pregnancy, but did not grow well right from the start. He couldn't keep breast milk down very well, and by the time he was 6 weeks old, he was losing weight. The doctor somehow... I have no idea how he figured it out, but God Bless him!... diagnosed Pyloric Stenosis. This is a condition in which the valve at the lower end of the stomach is obstructed or does not fully open so that the digested food can pass through into the small intestinal tract. In short, the baby slowly starves to death.
Surgery was performed on Dad at the age of 6 weeks... they did something to open that valve (have no idea what, but I'm sure it was primitive!), and he is still with us today. He has always had digestion problems, and now takes medications to help his food digest, but he has had a long and healthy life!
Just think about what Medical Technology is today!! I really feel it will go well, but just to make sure, I am still praying!
 Joyce
Grow, Sophia! Get strong, Sophia!
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Stephanie
Gathering Sachemess
USA
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June 23 2002
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Posted - March 07 2003 : 11:31:47 AM
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Home! Wow it's great to hear that word when we're talking about the near and forseeable future!
Sophia, click your heels and repeat after me:
There's no place like home, there's no place like home.
Love
steph |
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securemann
Deerslayer
USA
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July 08 2002
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Posted - March 07 2003 : 2:33:15 PM
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| Homeward Bound.I think Simon and Garfunkel would agree! Happy 5th month B-Day Sophia!! |
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Lainey
TGAT
USA
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May 18 2002
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Posted - March 08 2003 : 12:52:34 AM
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IF my daughter requires surgery (haven't completely decided 100% even though I *know* it's almost unavoidable) it will most likely be the end of next week. Could be sooner, but I want her to have more time to possibly circumvent it.
Common with preemies who've been intubated, have trouble swallowing, esophagul damage, heart problems, etc. is a tendency to reflux. Everything that goes down comes right back up, causing corrosion to the esophagus & windpipe and, sometimes, lung damaging asphyxiation. With Sophia, eating means burning in her throat & severe heartburn. She's more than eager to eat, and she sucks & swallows just fine - until she starts refluxing. Then she stops, gags, & clamps her mouth shut, unwilling to take more, leaving her way short of her caloric/nutritional requirements & requiring the balance to go in her nasal-gastro tube.
The remedy, if she doesn't overcome it & the meds don't taper the reflux incidents (which isn't happening) is a Nissen Fundoplication & Gastrostomy Tube (or G-tube). The Nissen procedure is meant to tighten the valve between the esophagus & stomach by wrapping a portion of the upper stomach around the esophagus. Just like a scarf! It tightens the valve so that food goes in but can not easily come back out. Vomiting isn't really prevented as that takes stronger muscle contractions which would still push through that valve.
The G-tube is used either to feed (some babies can't, for a time, suck or swallow & some, like Sophia, just can't take in enough for a period of time) or to evict (like air or gas). It's generally removed after several months & the opening will close up (like pierced ears). I saw another baby tonight who had a Nissen/G-Tube op on Monday. A midline incision & button valve to the left. Not too bad, really. As with everything concerning my daughter, it basically means she'll require more care & more patience. And I won't be going anywhere but to doctors' offices for months. That's okay. She's worth it.
Regarding the post-op worry; she's always done great & rises to each challenge, but, her post-op history has been rough. However, she's a LOT stronger, bigger, & healthier than previously so she probably won't struggle so much to recuperate. She'll probably have the ENT docs check her out prior to surgery (IF) since she's still having weak vocals (though they've improved - very quiet but not hoarse) & they can intubate while they examine. And she won't eat for TWO days! That's going to make her oh so mad!!!!!!!
I took Michael (2 1/2 years old) to meet his baby sister on Tuesday night. It was great stimulation for Sophia - real *kid* sounds that wasn't simply crying!!! Michael was amazed to see "Baby S-phia" with his own eyes - he talks about her all the time & sees her pictures, but he needed to see & touch her. (It was an *illegal* visit since Michael isn't three yet ... against the rules - but after all this time, who cares?!)
She had another head ultrasound ... no vascular bleeding, perfectly perfect! And at 5' 10 oz, with hair growing steadily, & the big, brown eyes everyone says she'll 'grow into' - she looks great. Tonight, being her birthday and all, she was cute as a button & sweeter than a sweet pea!
Not really worried about the surgery - just don't want her to have to go through it again. But, once done, she's a week away from home. And that's a darn good thing.
(Joyce, incredible story about your dad. The most competent doctors apply their skills & knowledge to their best ability while leaving enough room for God's miracles. Your dad was one of those miracles - 1918!!!) |
"Fides et Ratio" |
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Wilderness Woman
Watcher of the Wood
USA
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November 27 2002
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 Posted - March 08 2003 : 10:58:35 AM
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quote:
Originally posted by Lainey
I took Michael (2 1/2 years old) to meet his baby sister on Tuesday night. It was great stimulation for Sophia - real *kid* sounds that wasn't simply crying!!! Michael was amazed to see "Baby S-phia" with his own eyes - he talks about her all the time & sees her pictures, but he needed to see & touch her. (It was an *illegal* visit since Michael isn't three yet ... against the rules - but after all this time, who cares?!)
You GO, Girl!!
Sophia needs that! Your other children need that! As you know, bonding is so important. After all, Sophia heard all of those voices from within the womb, for several months. She must have been wondering where everybody was!! And now she has met Michael.
Which brings to mind something that I have been meaning to ask about. Obviously, this long five-month "ordeal" has taken up much of your time and energies (both yours and Rich's). Surely this has been very, very difficult, and has caused some hard feelings among family members. How have your other younger children handled the possible "jealousy" problem? Has there been a problem with that, and how have you handled it?
Thanks so much for the update. |
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Lainey
TGAT
USA
Bumppo's Patron since [at least]:
May 18 2002
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Posted - March 08 2003 : 10:23:48 PM
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quote:
How have your other younger children handled the possible "jealousy" problem? Has there been a problem with that, and how have you handled it?
Thanks so much for the update.
Other than little Michael seeking reassurance, especially during the first few weeks, I can't say I've seen any *signals* of jealousy. It could be that Sophia's situation was so vastly different that it defined family dynamics right from the start. Or, it could be that once she's home there will be those (trying) tests of love. If so, letting the younger ones *help* & feel needed usually does the trick! (So does ice cream, right?) |
"Fides et Ratio" |
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Wilderness Woman
Watcher of the Wood
USA
Bumppo's Patron since [at least]:
November 27 2002
Status: offline
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Posted - March 09 2003 : 12:48:11 PM
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LOL! Ah, yes...
A mother's gentle touch... a father's calming words... and ice cream! A perfect combination that works nearly every time!
Good. I'm glad there haven't been any major problems yet. It is a testimony to a good, strong, loving home.
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Yes ... One More! ... The Sophia Story!
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