As soon as I posted the first posting today, the doctor came in and said that he is diagnosing Rylie with VOD (a very serious liver disease), because she has so many of the signs. He did say he thinks it is very minor, and it will go away on its own without any intervention. This is proof to me that all the prayers have made a huge difference. I'm so thankful that God has heard our prayers against VOD and has made this just a diagnosis on paper and not a life-threatening or long-term health concern.
The doctor ordered another ultrasound for Monday to check on the blood flow in the liver. She is getting her bilirubin levels (the junk that hangs out in the liver) checked every day in the mean time. The doctor did say that if Rylie would start eating it would help get all the sludge out of her liver. Of course, I think we're a ways off on that one. She's staying on the food drip right now that the doctor calls "the most expensive food she'll ever have."
Thanks for praying with us.
Followers
About Me
- Rylie Suzanna
- My favorite things are chips and salsa, swimming, and music. I also love being spoiled by my family. Since being diagnosed with Hurlers in November 2007, my parents have set up this blog to update friends and family on my treatment, as well as my latest tricks.
7 comments:
Better to take the precaution of diagnosing it than assume the symptoms are just a coincidence, right? We'll be watching for Rylie's improvement, thankful that the docs are watching closely and prayers are being heard. To celebrate: Rylie's 3 weeks into her new life! Hugs from CO. :)
Thanks to you for your candid updates as so many folks are wanting to pray for you on a daily and hourly basis. You are never alone and your prayers are heard. May the Lord bless and keep you this evening.
Kathy and Dick
Thank you for the update!!! We'll pray she'll be eating some good ol' fashioned cheap food soon!
Hang in there, Rylie-bee! Keep that VOD at bay, and we're thinking and praying as always.
Love,
Gracie's Crew
Jade, I am thankful that you have wonderful doctors taking care of your precious daughter. Your updates are inspiring and I hope that one day I will be as good of a mother as you are. You and your adorable family are in my prayers.
~Erin
The Stratman's are watching and praying every day...lovingly...Gary and Deb
Thanks for the update, and Rylie, keep that VOD at bay!
Lots of hugs to you three!
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