Kristine,
Thank you for replying and for sharing with me! I've been praying for wisdom
about this decision, and things seem to be pointing toward GOing.
I'm looking into Angel Flights & Miracle Flights to see if we can afford this.
I know God will provide if this is what we need to do.
I love your email address ... great to meet another sister in Christ!
Thank you again
Blessings,
Kim

Kristine Reed <mama4jesus@...> wrote:
Hello,
I'm sorry to hear of your daughter's health problems. Poor girl sure does go
through a lot.
I wanted to answer your question about possibly seeing Dr. Li in Milwaukee.
I would have to recommend if you can get to him, do it. He is worth it. We
first saw him when he was in Chicago, and by that time I had read and heard
so much about him that when we met I felt like I was in the company of
royalty! Although he doesn't act like it *Ü* He's soft spoken, and right to
the point. He'll ask you lots of questions that will help him decide
appropriate treatment. He does his homework reading charts and notes and
whatever you provide him so he'll be ready to help your child. We've seen
him twice now, and we're going back next week again. It does help that I'm
only a two hour drive from him though. I'm so blessed to have him right in
my backyard so to speak.
As far as doctors following his advice, I heard somewhere that if you live
in a different state from him, a doctor doesn't have to abide by a protocol
written by him. If you live in WI however, a doctor does have to follow the
protocol that he's written for your child. I have no idea if that's really
true, and why, but that's just what I heard. Do you have a protocol from him
for your daughter? We have one for our son, and when we take him to the ER
they follow it to the letter, although I have in the past requested a
slightly different course of treatment than what it says, and the doctors
have done what I asked. By now they know my son and me, and they know that I
know what's best for him. It's nice to have doctors that listen. Plus it
helps too, that Dr. Li did his residency at our local hospital, and all
these years later, when I tell people my son sees Dr. Li in Milwaukee, they
all nod their heads and smile and say something very positive about him.
This coming from medical students and residents, who would not have known
him during his time at our hospital. His reputation follows him wherever he
goes.
If you have any questions for me, I'd be happy to help you if I can.
Kristine *Ü*

-------Original Message-------

From: Kim Mangione-Middleton
Date: 11/21/07 16:48:49
To: cyclicvomitingsyndrome@yahoogroups.com
Subject: [Cyclic Vomiting Syndrome] New to The Group...

Hello, I'm brand new to this group... I have a little girl who will
be 8 in 7 days - she is extremely medically fragile, which a huge
medical history, including 5 open heart surgeries, cardiac arrest,
seizures, and a flat-line EEG a few years ago! Her heart Dx is
Tetralogoy of Fallot with Pulmonary Atresia, and Major
AortoPulmonary Collateral Arteries. She also has DiGeorge Syndrome
(AKA VeloCardioFacial Syndrome, or 22Q11 Deletion Syndrome). Her
latest Dx is Cyclic Vomiting Syndrome. She has had these severe
vomiting episodes since she was 2 years old, with Drs at Children's
Hosp of Philadelphia running EVERY test imaginable. Since this is a
diagnosis of exclusion, it has taken 6 years to finally agree that
this is what this poor baby is suffering from. I'm wondering if any
of you have heard of Dr Li in Wisconsin?? He oversees 715 CVS
patients, in 42 states, and as far as Hong Kong & Australia. We are
praying right now whether or not we should travel to Wisconsin to
see Dr Li. Our docs at CHOP has contacted him for help, but they
have not done EVERYthing he suggested. They followed his
recommendations for rescus measures, but not for prevention.
Presently Emmie is taking Topomax, and we're seeing severe side
effects. Also, any children with DiGeorge Syndrome like my little
Emmie?? The docs don't seem to know if there is a connection between
DiGeorge & CVS. I do appreciats any help/advice any of you may have.
What a blessing that I found this group!! If you'd like to meet my
little angel, here is her site: www.emmie.info ... She also has a
CarePages page, which can be linked through her website. Thanks! God
bless! -Kim in NJ




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The Pampered Chef Independent Consultant:
www.pamperedchef.biz/kimmiddleton
and Homeschooling Mom to:
Kira age 18
Elena age 14
Erica age 14
Christian age 8
Emmie, our miracle heart baby, age 7
MEET EMMIE AT www.emmie.info
... But be careful ... She will steal your heart!


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