Today was our last day in Pittsburgh and it was a fairly easy one.
Tori had lab work to check her potassium levels first thing this morning. They have stabilized with the supplemental potassium we have been giving her, so that will continue.
We then went to do her Visual Evoked Potentials eye exam, which is an interesting experience.
They play a movie and then change the screen to a black and white checkerboard screen that moves. Tori had sensors all over her head to detect brain activity as she was being stimulated.
We checked out of our room at the Ronald McDonald House and were surprised to find out that someone had anonymously paid for our stay! (For those who aren’t aware, they suggest a $15 per night donation to help cover a fraction of the costs. They never turn anyone away for financial reasons.) Thank you to whoever generously paid for our lodging!
We had the privilege of meeting a young lady – Johanna – with metachromatic leukodystrophy (MLD) who has been at the hospital for months now receiving a stem-cell transplant. You can follow her story here.
Her mom has been following Tori’s story and reached out to us during the week. We discovered that we were actually next-door neighbors at RMH! We were so happy to get to meet them.
Please pray for Johanna (JoJo) and her family as they finish up their time in Pittsburgh and as the transplant continues to save her life.
After that, we had lunch with Anniston’s family and were then joined by two ladies who started a ministry to support families of leukodystrophy children. They call it Hope Alive. They brought gifts for the children and roses for Reesa and me. I love that they are advocating and raising awareness as well as being so focused on supporting the families who are going through so much.
We said our goodbyes to the Bazar family (who we love and are SO glad we got to see so much this week) and we drove home. Tori did extremely well and seemed to be so alert and comfortable the entire way.
We have many specialists with which to speak this week to address the things that were discovered in Pittsburgh but we feel encouraged about Tori’s overall health.
Thank you to each of you for praying for Tori – and for us – this week. Your support means so much to us! ❤