Category Archives: hpe
Kennady Update Aug20, 2013
FROM MY BEAUTIFUL WIFE!
Robin and I haven’t posted since Kennady got home from the hospital during her last stay because the pace of life right now, feels similar to the pace of an avalanche at your back while skiing straight down a hill.
Kennady made it home and recovered great after her baclofen pump was implanted.
Approximately 1 month out from the surgery, she got an infection in her site which ultimately resolved on it’s own.
10 days ago (2 weeks after the last infection healed up) Kennady’s incision on her back, developed a red raised spot on it. This grew over the week and then the redness spread to the front of her belly and incisions.
I took her in to the E.R. on Saturday knowing that we were most likely not leaving until we got some antibiotics, at a minimum.
Low and behold, she was admitted.
Blogging Update
Hello Peeps,
I have over 600 posts on this blog and it is a great place for me to post on my life and church stuff. However, since February 2012, my wife and I have launched a ministry specifically dealing with our life with Kennady (our daughter born with severe special needs). Ever since that time, I have blogged very little here on pastorrobin.com.
I will always keep this site going and will post from time to time. The most recent stuff on this blog is in the “Leader’s Resources” tab above. I have been posting leadership and general church stuff in that area for your reference. I intend to post more videos and resources from what we are doing at PromiseLand. Hopefully, you will get some benefit and be able to apply some of it to your scenario. I am very interested in helping other pastors and leaders. If you are in need of general or specific help in your ministry or church, please comment below and we can connect.
Most of the daily or current blogging centered around my life and personal experience will now happen at
www.mademeaningful.com. We would love for you to join the conversation over there.
Made Meaningful
Erica and I have decided to launch a new ministry based on our experience with Kennady. We want to remind people that culture and society are messed up. Therefore, we shouldn’t rely on culture and society’s definition or acceptance of our value and meaning. When we ‘lean on’ secular definitions of significance, then we are left at the discretion of emotion and the majority vote.
We stand on the Word of God alone to define everything.
Psalm 139:14 “I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well.”
Check out our new website www.mademeaningful.com and please “like” us on Facebook.
My Thoughts on Kennady Being Thankful
Here is a clip of me speaking on Kennady’s ability to be Thankful in the midst of a debilitating disease.
Good News about Kennady
For the last nine and a half years, we have received either negative news or no news on our daughter, Kennady’s brain development. (click here for her story from birth). That changed today.
We go annually to the Scottish Rite Hospital in Dallas for a special Neurologist to see her. Dr. Delgado specializes in kids with her condition (HPE or Holoprosencephaly). Today, when he saw her latest brain scans, he was surprised and very thrilled to see the positive development of her brain. Not only has it grown, but it has started dividing into 2 sections. When she was born, her brain was not divided at all (right and left side). It is now starting to have a clear division between the two and he said that they are going to have to CHANGE her official diagnosis.
We have not seen tremendous change in our physical or mental responses. However, her teachers (they are awesome!) have said that she is communicating some with the equipment they use.
Thanks for praying with us for our girl, Kennady!
+robin
Here is a picture of her brain at birth:
Here is the latest pic of her brain 5/2011:
Robin Steele 