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Reed’s Journey

Reed came in to this world with multiple life-threatening medical issues.  Every bodily system was affected in some way leaving him unable to do basic things like eating or breathing.  

 

Thankfully we had learned during the pregnancy that there would be medical complexities, so we had the mobile ICU team waiting at delivery.  They transported him immediately after birth to the NICU at Nationwide Children’s Hospital where he spent the next 7 months.  

Those first 7 months were a whirlwind.  We were in a whole new world, and we had to learn the lingo on the fly.  I remember feeling like we were merging onto a highway with a pedal car! It was just an onslaught of new providers, new diagnoses, new medications, and new medical words (thank you, Dr. Google!). 

In the years since Reed came home, we have learned 10x more than we did in those first few months.  We have learned how amazing the special needs community is.  We have met other families who ‘get it.’  We have worked with amazing physicians, nurses, and therapists who have each poured out their love and attention on Reed. We have truly found an extended family of people who are here to support our family when we need advice or when we just need to vent. 

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Overall, Reed has changed our lives for the better. He has challenged and strengthened our relationships with each other as well as our relationships with God.  He’s just ornery enough to keep us on our toes, and he’s cute enough to get away with it! 

His overall diagnosis is CHARGE Syndrome, however he has many additional diagnoses in addition to CHARGE.  I am always willing to answer questions about Reed, his medical diagnoses, and/or our experiences along this journey.  Below are some additional links for more information:
 

Resources

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