Wednesday, June 4, 2014

Biopsies are back! And an overdue update

First off Miss Grace's biopsies are back and looked beautiful! We are overjoyed with this news! That means that our intense steroid treatment and our elimination diet and our change in reflux medication is holding her stable. This is fantastic news as we were on a downhill slide for a while there. Our new doctor wants us to give her a few more weeks of this stability before we change things up again.  We go back and meet with him on June 18 and will talk about weaning off the steroids.  There are quite a few reasons why we want her off steroids, but we will have to see how the whole treatment team weights in.

 
 
This morning we had our monthly nutrition appointment. This can cause some anxiety for Grace as feeding is such a huge issue and in the previous two months we have dropped weight. I am PROUD to say because the medicine is working and she is feeling better she was up 10oz in 31 days! I am so proud of her. We have not recovered all the weight we lost but she is on her way and she gained appropriate weight that is expect in a normal 4 year old in that time frame!



Miss Grace was matched with a runner two weeks ago through the "I Run 4" program.  This program is a nationwide effort where they match special needs children and adults with runners across the nation. The runners dedicate their miles to their buddy. They encourage each other to work hard!  Grace's buddy is named Ms Christine and she lives in NJ. I think this is super special as my grandfather that passed away in December was from New Jersey. We are excited to have Ms Christine and her son, Cody, Run 4 Grace! Today is National Running Day so we celebrate them!

 

 

We are getting ready for vacation.  Last summer we "vacationed" at Our Children's House at Baylor Dallas.  While we feel blessed to have access to these services for Grace it meant lots of home time the rest of the summer. This year we are looking forward to time away with family. With Grace's anxiety and transition issues we have been talking a lot about our upcoming trip and "reading" the vacation guides together!

 
 
Today I would also like to recognize Grace's AMAZING Sunday School teachers at our church.  Grace is not an easy child and sometimes can be downright challenging. She has been blessed with two amazing teachers - James and Ashlee. They genuinely love her like their own and make sure she is included and engaged in every part of the class. You have no idea how much that means to my Mama heart. Here is a picture from Sunday. She was hanging on his every word! I love it!
 


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