CHOP Visit and BIG Update

Hello Everyone!  Kyle and I apologize for not keeping updates active once we were discharged.  First came Christmas, then New Years, then the school year was coming in full force and we've been just trying to keep up with everything.  Riley has been doing wonderfully.  She went back to school only FOUR DAYS after being discharged, walked right in and hung up her backpack like she was there yesterday, and resumed life like normal.  It's amazing how flexible with life she can be!

Today's CHOP visit was with Pulmonary.  She not only got an A+, she got an award!  She uses her Bi-Pap 100% of the time every night, which the nurses were really impressed by.  Riley also continues to be an expert with her Bi-Pap, even telling us if we missed something, so she also got high marks for being a pro with putting on her mask.  Because of this, Riley got an award- C-PAP Champ!  The nurses presented her with a trophy, sang and clapped for her, for which she gave them a big bow.  Smiles were all around!

Because Riley's O2 levels are so good, they want her to do a sleep study over the next few months to determine what would support her best with her new levels.  Good things are happening because of her last surgery!

And speaking of her last surgery, we've gone to 2 separate cardiology appointments and we were told the same thing....

The surgery worked!

In the doctor's own words: "If you looked at Riley's heart today, you would never have known the heart defect she was born with."  She still has a small murmur, but she has 4 chambers in her heart and its beating strong!  Her O2 numbers even read up to 100%!!!  Just to remind of where she's coming from, her lowest was 75%, and her average was usually around 85% ever since she was born.  She's now reading an average of 98-100%!!!

This was 1000% God's timing.  When we sat in CHOP in 2019, discussing how she wouldn't make it past 8 years old, how there was no good surgical path for her- all of that was true at the time.  BUT GOD.  God knew when she should be born, during a time where medical advances would improve in her favor using technology that did not exist 5 years ago.  How they would be open to doing the type of surgery they did on a child with Trisomy 21 at this time when she would not have been a candidate years ago.  How she had amazing doctors and nurses advocating for her, at CHOP, at Nemours, and even at Boston Children's Hospital, all reviewing her case and advocating for her, seeing her strength and potential for this surgery.  How she has a village around her of family, friends, therapists, church members, teachers, and more, who love her and support her to give her strength.  All of these things came together in Riley's favor- her heart is healed.

Riley has so many new journeys ahead of her.  She's on her way to KINDERGARTEN, she's talking more, she's able to keep up with other kids- including her big brothers.  She's still a 6 year old in a tiny body- but don't let that fool you!  She's got her sassy side, and she's super smart!  She's in a really good place right now and keeps improving.  We're SO PROUD of how much she's improved in less than less than a year.  Thank you to each and every one of you for your continued prayers and support.  Lots of more years of big things are ahead for our Riley girl!!!