A Lil' Boy's Journey to Live….

Archive for June, 2014

☆ Today was #Priceless ☆

On Wednesday June 25th 2014 Riley did something truly Amazing! Something that never before in his life could he have done. Before transplant Riley couldn’t walk 50 feet without getting sick. After transplant he practically had to learn to walk again. Last year at this time we would go to the stairways at CHOP for PT and Riley hated it! On Wednesday though Riley climbed 217 steps to the top of Barnegat Light House .. Spiral steps at that. Then after Enjoying the view he walked the 217 steps back down .. without assistance! It was an Amazing Experience to see Riley be able to Conquer those steps! It was in that moment that you really get what it’s all about! It’s about this .. about a little boy living a life we never imagined possible! We may not know what tomorrow holds but today was Priceless .. ♡♥

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June 30th It Is .. ♡

To start .. Riley is doing Awesome!! That being said he is scheduled for surgery on June 30th to close his stoma from the Tracheostomy and to have dentistry clean/evaluate his teeth. This will require an overnight stay in the PICU or CICU. These procedures are being done 2 days after we return from the Jersey Shore. (Thank you Aunt Terry!) I only say that because we debated on still closing the stoma. For one it isn’t going to be done in time for the beach and two since using these new Mepilex covers on his neck it hasn’t been as raw and irritated as before. I spoke to CHOP about possibly waiting now to see if it would still close on its own but coordinating the different teams that Riley needs along with an OR time isn’t always an easy task. Since its been coordinated for June 30th we’re better off just doing it with his dentistry rather then waiting till October and trying to coordinate all over again. October will be one year since he was decannulated. They usually give the stoma a year to close on its own before intervention. So June 30th it is .. .
On a side note .. We should be moving into our new home this weekend! Yay! All the flooring has been done and Riley’s bedroom furniture is being delivered tomorrow! Needless to say things are a little Crazy in our house right now! We moved everything out of our old house last weekend and are packing up and moving out of the apartment this weekend. To add to the excitement Riley’s big brother Christian is graduating 8th grade on Friday! Double Yay! Then after a week in our new home we leave with my sister, Aunt Terry, for a week at the shore! Craziness! All Good and Exciting though! Thank you All for being on this sometimes Crazy but Always Amazing Journey with Riley and our family .. ♡♥

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