Stephanie Valdez: “She’s been getting strong this week and working really hard in all of her therapies. She was able to walk 10 feet with assistance, and laid on her stomach for 5 minutes.  Her blood levels have been up and down but she hasn’t needed a transfusion:-) Although, her blood levels dropped a little today. 
She had a swallow study that showed some improvement. Unfortunately, she is still at risk for aspiration so she can only have thickened foods and liquids.
She now has some arthritis in her ankles and knees.  They are going to X-ray her hands today, since the joints have been hurting her, to see if it’s arthritis or calcification that can be caused by her disease. Tomorrow will be another big treatment day with methotrexate, IVIG transfusion and 1000 mgs of steroids.  We are praying that it all goes well and her treatments do not make her too sick… She will also be admitted to inpatient rehab now that she is able to tolerate more therapy time. She will be on a strict schedule in the day and will eventually be able to get passes for a couple hours out of hospital but only if she is stable enough. They are also probably going to be starting serial casting on her ankle to stretch them down so she will eventually be able to walk flat footed again.
I’m so proud of the progress and her amazing attitude through this all, never giving up and staying strong at heart, such courage and inner strength 💕
Thank you all so much for the positive vibes, love,support and prayers and donations…
Much Love….”