My Story

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Journal

Wednesday, July 1, 2009 11:17 AM, CDT


Jaxon had his biopsy yesterday and there is moderate rejection.  We have started steroids to try and combat this.  He will be getting prednisone to try to slow down the rejection.  He will get steroids Tues, Wed, Thurs.  Then Thursday morning we return to Children's Mercy to get labs drawn.  All of the teams are concerned as Jaxon now has a horrible time getting any blood work done.  Jaxon will be receiving a port for blood draws on July 20th. 

So, today and tomorrow it is on the agenda to get steroids. Thursday at 8:30am we will be at the lab at Children's Mercy which is an hour and a half away.  We will then go back to Chillicothe.  I start working overnights Thursday night and Jaxon and Abby will be going to visit their dad and grandparents for the 4th Of July in Savannah.  Abby and Jaxon will be gone through Sunday and I will be working overnights. 

The 10th will be a full day at Children's Mercy with Oncology visit, C-T, liver clinic, pre-anesthesia testing and an ultrasound.  I am keeping my fingers crossed that I can keep everything straight and keep me on track.  It is often so difficult to keep all the appts and continue to do the every day stuff too.

I just want everyone to know that we are FROGging on.  Please continue to pray for our friends and encourage the families of angels that have gone on.  One in particular is really having a rough time right now...Please go visit Taylor's momma, Ann.  I know every day without your child is tough and she needs all the love and support we can provide.  They were such an awesome support to our family.

Hugs and prayers,
Amber

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Each & every word you write is cherished. We read your words again & again-- God, often, chooses to speak to us, teach me & love us through them. Please write regularly or email me personally.

(address to the right.) Amber

P.S. I look forward to sharing this with Jaxon as he gets older.

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E-MAIL AUTHOR

amberburns04@yahoo.com

HOSPITAL INFORMATION

Children's Mercy Hospital
2401 Gillham Road
Kansas City, MO 64108
(816) 234-3000