RE: [RSS-Support] update on Elyse

2008-11-23 13:41:04

- Hi,
Just wanted to share. Elyse went for her 1st check up since she started GH.
Since 3/28/02 she has gained 1.5 lbs. and grown 1.8 cm or .71 inches. She is
so excited. We also found out the Lupron is working and no more signs of
puberty. She is taking Lupron Depo every 90 days. Is anyone else using the
GH Nutropin Depot? Elyse only has this injection every 2weeks. It's a more
painful injection but she is happy to have it. And her 2 years of migraines
have stopped for 8wks now. Can things get any better!!
Thanks for reading,
Mary (Elyse RSS 11yrs will be 12 on 7/13, 24.9kg(55lbs) and 136.2 cm(4ft
5.6 inches)and Anthony 15yrs almost 16 and starting drivers ed!)

Moderator Stuff -- a nasty surprise

2008-11-23 02:34:04

Hi everyone,
I was away for a week so I am little behind in keeping up with messages.
While I was away I received an e-mail from Gail P. in Canada. She
spotted an inappropriate bookmark in our web page ( THANKS Gail P. for
spotting this). I checked the e-mail address of the creator but they
are not a memeber of this group. So either they joined, posted the

Storm's GI checkup

2008-11-22 19:05:01

Storm had a checkup with the GI doctor today. He is doing great! He gained 3
pounds in 3 months. (She attributes some of that to the GH).
He has an appointment with the Endo next week. We are anxious to see how tall he
is.
Just thought I would share.
Carmen, Mom to Storm, 38 pounds!!! 6 yrs. 10 months

Re: Storm's GI checkup

2008-11-22 18:09:06

Carmen, that's great news for Storm. Good luck with the job- and
home-hunting.
{{HUGS}}
Steph (Darcy 30 months 7.5kg ~82cm various minor physical
malformations and Tessa 7)

no job---not RSS Chat

2008-11-22 09:58:20

Hi all
To those who know us, you know we have been looking for another job. Well, our
lovely employers have decided that since we don't want to work here any more we
can go ahead and leave.
Our last day of employment is June 16th. As of right now, we have no job and no
home. So please pray, think good thoughts, whatever you do. We are still
planning to be at the convention in faith that we will raise enough money to get
there and pay for food. (Hopefully we will also have a new job before then!)
Thanks!
Carmen, Mom to Storm

Update on Rosemarie: Okham's razor

2008-11-22 01:42:55

Okham's Razor is a theory which suggests that the simplest solution is
more often than not the correct one. Now, this was suggested to me a
few months back as we were first trying to figure out what was going on
with Rosemarie. A very good friend sent an email reminding me that when
you hear hoofbeats you should think of horses not zebras. He wondered
at that time why we were looking so hard for answers when the simplest
thing hadn't even been considered. He suggested a horse... He wondered,
had I ever thought that maybe I'm just a really bad mother? It was a
very funny email!!!
This one will not be a funny email! But read it anyway.
Well, it seems it WAS a horse and not a zebra, at least the eating part
of her life... Because of all of her other difficulties, and the fact
that she had NO symptoms at all of reflux, no one thought she could
possibly just have this most common of baby problems. And as it turns
out, she does. (thanks in advance for not saying "well, of course it
was reflux, how could you not have known that" or "why didn't you look
for this sooner" or saying ANYTHING like that, even if you think it) I
am certainly asking myself that enough these days, and also feeling
tremendously sad that Rosemarie was having pain all these months that
she couldn't tell me about. She never even looked uncomfortable or even
cranky. But the whole time, she wasn't eating much because it just hurt
her to eat. She never complained, she just didn't eat so it wouldn't
hurt. Poor baby...
The good news is that we figured it out and have her on a new drug. I
have always understood the phrases "miracle drug" and "the miracles of
modern medicine". Now, however, I believe that these are literal and
not just figurative expressions. Rosemarie has only been on the drug
for 4 days, but she is already eating enough not only to maintain but to
catch up. It is truly a miracle, and the answer to all of our (and
your!) prayers. We cannot tell you the relief that we are feeling.
While she still has some other difficulties that are completely
unrelated to this one, the eating thing was clearly the most serious.
And now that this part is solved, the rest, while still important, is so
much less worrisome.
I will certainly let you know when we get the rest of this all figured
out, but for now, I can think of nothing but to be grateful! I thank
God for this miracle drug. I thank God for Gretchen, the speech
pathologist at St. Joseph's hospital who quite aggressively said "you
really shouldn't get a tube until you at least TRY this medicine" and
then proceeded to get the head of the feeding clinic at St. Joe's to
call the GI doctor before our tube appointment which all resulted in our
trying this one last thing before we tubed the baby (and that thing
worked!) I thank God for Rosemarie's other doctors and therapists. I
thank God for all of you and for Peter, Sam and Joshua. And of course,
today, more than anything, I thank God for sending Rosemarie to me.
I thank you AGAIN for all of your tremendous love and support... for
your prayers and kind words... for your advice and suggestions...
See, I told you it wasn't going to be funny. Maybe next time.
Jeanne

Re: [RSS-Support] taking meds

2008-11-21 18:32:04

Yes, we always used that one, but she's outgrown it!!!
lol, too young for bribery, too old for reflexes!!!
Jeanne

taking meds

2008-11-21 17:23:23

another thing i remembered about getting kids to swallow. this is
failsafe with infants but i don't know if it works with bigger kids.
once the liquid is in the mouth, if the child won't swallow, you just
blow gently in their face. they swallow immediately; they can't help
it. it's some sort of reflex or something.

Re: [RSS-Support] thanks and here's what's happening now

2008-11-21 10:40:51

The
I've had some problems with nutritionists' advice, too. It seems that their
field doesn't quite cover the needs of people who have physically-caused
appetite problems very well.
And then sometimes the timing of experimentation by the nutritionist has been
unfortunate...
Inga

Re: Feeling Frustrated

2008-11-21 03:34:44

Jody,
{{HUGS}}
I don't know what to say! you are right, it just isn't fair.
Steph