Molly & Richard’s Story

Site created on May 6, 2018

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 Molly Perry

It's been a bit of a crazy few weeks around here and it just got a bit crazier! 
They cancelled her 2nd stage bladder closure and pelvic osteotomy surgery because she's too small. We decided to move forward with fixing her feet and spent 4.5 weeks doing casting with the surgery to release the tendons and pin the bones scheduled for tomorrow. On March 19th she had a full brain and spine mri which showed that the spot on her Back that we've been concerned about has continued to get bigger despite the brain surgery that was done in hopes that it would go away. That left us with a what's next scenario. The original plan was to let things be and carry on with doing her feet and keep an eye on it. Then i had time to think about it more i questioned if this was the best plan knowing that her bladder surgery is about 16hrs with 2 weeks of bed rest on her back after that. I wondered if that would be good for her spine at all. And let's be serious here this mama might go crazy(er) if her bladder surgery gets cancelled again!  So I asked each surgeon on her team (aka "the fab 5") they all said "spine comes first" so I had another discussion with her Neuro surgeon Dr Warf and it was decided to stop fixing her feet right now and next Tuesday April 9th Agnes with go in for a spinal surgery to detether her spinal cord for a second time and to place a shunt in her spine that will redirect the spinal fluid so the large pocket of spinal fluid on her bum will go away.
But... this afternoon we were admitted to Boston children's hospital because she got a fun stomach bug over the weekend and has been doing what's called "dumping" which has caused her to be a bit dehydrated and her blood and urine sodium levels are "critically" low. She is getting IV fluids filled with sodium to help replace what's been lost. Praying her tummy settles and we are able to go home before her surgery next week. Poor darling I've never seen so much baby poop... Praying she turns around and is back to her spunky self again! 

We are loved and we are held in the hands of God. A sweet mama friend with a like girl with OEIS just like Agnes says "Jesus, Mary, I love you, save souls amen."

Ps the link that shows up below to donate is not for us. That money goes to caring bridge to run their website. 
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