Riley’s Story

Site created on August 14, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Haley Clark

I know that I said that I would post on Saturdays but I have a very good reason for not.  RILEY IS HOME! We were able to take our little boy home on Friday!  The week leading up was very uneventful.  On Tuesday, the 10th, we were able to leave the ICU and go to the Cardiac step down unit.  We continued to work with physical therapy to keep his development on track.  The main therapist, Holly, told us that if she didn’t know he had been on ECMO, she would not be able to tell from a therapy stand point.  His ability to hold his head up and track objects, his recognition of voices and faces, and the way he moves his body are all at the right stage in development for his age.We continue to try to gain weight.  With getting back into a routine and getting off some medications, we hope that he starts gaining better weight. In terms of his heart, they are happy with where it is currently at.  He still has occasional runs of arrhythmia but his body is able to tolerate it well.  Because of that, we will still need to keep a close eye on him.  Frequent doctor visits are in our future.  Even though it can be a hassle at times, we are happy to do it.

 

This journey has been unbelievable.  I don’t think that Steven or I will ever be able to fully process what we have been through as a family.  We are forever changed by this and are more knowledgeable about things we never expected to know.  We are so incredibly grateful and thankful to have such wonderful people in our lives.  Without that love and support, we would not have been able to get through this.  I hope to not have to update this again, that Riley is on the road to a normal childhood.  If something were to change, I will update this page but otherwise this will be my last post.  Thank you all again, from the bottom of our hearts!

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