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Ashley Belle DiGiulio
4/24/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated while we're at Cleveland Clinic for 3 weeks. We appreciate your support and words of hope and encouragement during this time when it matters most.
Ashley (turning 17 years old on 5/5/16) has been suffering from debilitating, chronic migraines for the past three years. They've progressively become worse, and she has been in (almost) daily pain for the past year. Her life as a teenager is on hold: she's not in school (she's on homebound), she misses out on most social interactions with peers, and her days are often spent in bed as she tries to "sleep off" the pain and resulting nausea & vomiting from the migraines. You name it, we've tried it! Some things have helped for brief amounts of time, but there's not a "clear cut" fix for her. We have a fabulous team (Dr., PA & NP) at DENT Neurological in Buffalo, NY, but Ashley's migraines have proven a challenge to treat.
Starting on 4/25, Ashley will be a part of the Pediatric Pain Rehabilitation Program at the Cleveland Clinic Children's Hospital. She will be inpatient for 2 weeks, followed by outpatient for 1 week. She will have very busy days filled with activities to help her work through and manage her chronic, daily pain and to build physical and emotional strength. Her daily activities will include goal setting; PT; OT; swimming; yoga; recreational, art & music therapies; counseling; specific mind-body skills; nutrition classes; schoolwork. We are allowed to visit with her for three hours every evening, and we (the parents) have classes and sessions we also need to attend daily at Cleveland Clinic. We're excited, hopeful, and thankful that we have this opportunity for Ashley to hit the "re-set" button so to speak (our insurance company has been amazing!). It's going to be a chaotic three weeks with time apart from one another and a lot of driving to and fro (we're working it out so Lindsey will be home with a parent 'almost' all of the time = best scenario for her). I know we can do it...and we all have positive attitudes at the moment!
If I could ask for specific prayers, please pray that this is the start of Ashley's return to a healthy/normal teenage life...that this is the start of the return to normalcy (whatever that is!) for our family of four...that we are able to support her and one another in whatever ways needed during these next 3 weeks...that Ashley is able to feel some pain relief and to feel a sense of hope that she is on her way to recovery...that Lindsey doesn't feel too anxious about all the plans/changes/transitions...and that we all have a sense of peace that things are going to get better. Thank you! God Bless! Alicia