Friday, January 21, 2011

This is a copy of an email I sent out earlier - it's the latest update on how Lillie is doing.

Hi friends,
I'm home for a short while...showering, eating without a toddler sitting on my lap, and doing my best to update everyone in the quickest form possible - hence this email! :-) Thank you to everyone who has been praying! Chad and I have truly felt such peace since Lillie Anna was admitted to Wolfson's...I think a large part of that peace is coming from the prayers that you all are sending up for us. We are confident that Lillie is in the best hands she can be in - our Heavenly Father's!

Here's the latest update:
The Upper GI test showed nothing abnormal - meaning they saw no blockage or twist in her intestines.
The Infectious Disease tests they sent off came back normal - meaning she has no infection in her intestines or stool.
The Parasite tests came back normal - meaning she does NOT have Giardia, E. Coli, etc.
The problem is that her stomach is still full of something (they don't know what, yet), and any time she eats anything, her tummy becomes dangerously distended and she begins having gosh-awful diahrea. Ex: Yesterday, after not eating anything for 24 hours, she was given a handful of cheerios (which she nearly choked on from trying to swallow so quickly). Within 1 minute of swallowing the cheerio's, she began having diahrea and her stomach swelled up and became rock hard. She then proceeded throughout the rest of the night to have SEVEN diahrea diapers....all from that handful of cheerio's. Unfortunately, the same exact thing happened today...she went 24 hours without eating, swallowed a few handful of cheerio's, and voila - distended/rock hard stomach and chronic diahrea. As you can imagine, if she were doing this at home without the i.v. fluids 24/7, she would be at a severe deficit.

SO, we've been told that Lillie will most likely (at the very least) be kept in the hospital over the weekend to continue receiving fluids while they try to let her eat a normal diet. We're meeting with a Gastrointerologist tomorrow to discuss how to proceed from here. They've fore-warned us today that Lillie will possibly have to have an Endoscopy on Monday, as well as an MG Tube to reduce the swelling in her stomach. They are currently looking in to Mal-Absorption Diseases (ex: Celiac) and I'm sure the Gastrointerologist will have suggestions on where we go from here. Chad and I have begun wondering about the possibility of Crohn's Disease or something along those lines, and are planning to ask the doctor all of our questions tomorrow.

The staff at Wolfson's is incredibly thorough and kind and I've been assured by several doctor's that they will NOT send her home unless they know what is going on. Brooke Caplin's (the CBS Ministry leader in Orange Park) daughter is on staff at Wolfson's and has been so kind to drop by and give us updates today - I nearly cried when I saw her this afternoon...she shared that she'd been going out of her way to follow-up with Lillie's team of doctor's to try and get details and answers for us. Such a kind thing to do, especially considering how busy she is!

My friend, Jamie, will most likely continue to update y'all as we learn something new. It's very hard for me to write out a detailed email on my IPhone, so I have been so thankful that Jamie has taken time out of her very busy schedule to continue to update all of you...she's much more eloquent then I am, so sorry if this is harder to read then her emails have been. :-) Thank you again for your prayers, comments, phone calls, texts, emails and hospital visits. We love you all!


Michael and Hannah said...

What, Lindsey I had no idea!! Already lifting up prayers, please please keep us updated. Love you guys.

lauren said...

I'm so sorry to hear about this!!! I will be praying and praying for your sweet baby girl, and for you guys. I can't imagine how hard it must be to see her go through this. Keep us updated!

Courtney said...

Praying for you guys!

Sara said...

Lindsey and Chad, We are so sorry to hear about sweet lily anna! We pray that Dr.s will find answers and that God will surround all of you durting this trial of life. We love you!
Zach and Sara Jo