Two days before leaving for America we had a follow-up appointment with Piper’s surgeon and a pediatric doctor. Here’s the happenings following information relayed during that appointment:
Piper Update/Urgent Help Request:
We had a check-up two days ago with our surgeon and pediatrician.
They think our daughter Piper probably has Cystic Fibrosis because she was born with meconium ileus, which apparently means she has a 90% chance of having CF.
So we need to get her tested. They said they don’t do the sweat test here (which is the gold standard for testing for CF and is the most commonly initial test done) but they can send blood to BKK to test for about $1000.
We head to America tonight and could do the sweat test there but we don’t have insurance and we don’t know how much it will cost. So we are trying to figure out what to do.
We were quoted by the Cystic Fibrosis Foundation that to see a doctor at a specialty clinic would be $400-$800 just to talk to the doctor, plus whatever the test costs.
So, we are looking for ways to get the test done inexpensively.
We will be in Texas for 3 weeks (the DFW area and East Texas) and in PHX, Arizona for 3 weeks.
If you have any connections with anyone who has connections with anyone who might be able to help us with this (ie. doctors, medical personnel, etc) please reach out to them for us.
Please be praying for us as we travel with two young children and visit family and friends and do support raising. Pray for rest, recovery, and renewed strength. That same day I also found out that my uncle passed away from a cancerous brain tumor. His wife also has stomach cancer and isn’t doing well. So lots of stresses in my family right now.
But God is always good and faithful and we look forward to seeing family and friends, talking with supporters, and seeing how God works in the hearts of everyone we encounter and talk with during our trip.
May God be glorified through all of these challenges.
You guys are incredible. Thanks to the lengths you went to we are now on the radar of the primary social worker and have two appointments at the Cystic Fibrosis Center at Children’s Hospital of Dallas next week – one for testing on Wednesday at 12p and a follow-up for results with a doctor on Thursday at 9:30a. It’s not certain but is anticipated that we’ll be able to do this initial round of testing and doctor visits for less than the single test in Thailand. …by/with specialists no less.
When I called to make an appointment the gal at the desk stopped me as soon as I said we lived in Thailand and would only be in America for a few weeks. She said she already knew about us and went to get the clinic’s director. Wow! It nearly made me cry in the most cared for way. Cared for by you all and the Lord. ThankYOU to everyone who jumped in to assist.
Prayers for Piper and these appointments, please. I hope you didn’t put away your pink yet! #PinkforPiper
Results are in: Piper is NEGATIVE for Cystic Fibrosis!
The results were provided as a number on a scale, and she was an 8. 60+ indicates CF. And the further below that 60 the better. Yipyay, hallelujah and praise! Wow.
We are still waiting to receive the results of her stool sample, which will tell us how well she’s absorbing nutrients following the partial removal of her small intestines. Continued prayers, please.
We’re so thankful to say that the only thing positive has been the experience through all of this. I so want to elaborate on all the ways God has been incredibly neat …but instead am opting to simply ask you all to rejoice in the moment with us. Leaving it at that for now!
As of today, April 10th, we’re still awaiting clear results on her stool sample and are praying for full nutrient absorption.