We just got home from our second trip to Pittsburgh to see Reesa's Krabbe specialist, Dr. Maria Escolar. This was an exciting trip because we met other families dealing with Krabbe including a baby from Maryland who is recovering from transplant surgery as well as a baby all the way from Argentina. We also had the pleasure of meeting The Aldrian Family from San Diego. They have twin boys, Tyler and Trevor, who turn 4 years old in November. Trevor has Krabbe and Tyler is a carrier but unaffected by the disease. Seeing the two boys was an emotional experience as Tyler is as healthy as can be while his twin battles this disease. Trevor is a trooper though and an inspiration to families like ours. He is the oldest child we know of that suffers from the early-infantile form of the disease which is what Reesa has. The Aldrian's have formed a foundation to help other Krabbe families called Peace, Love & Trevor. Please visit their website: www.peaceloveandtrevor.com.
As for the doctor's appointment things went fairly well. As expected, Reesa's disease is progressing but we're doing a good job of keeping her comfortable and as happy as we can. Reesa had an MRI(her third) because the doctor is a bit worried she may have pressure on her brain caused by fluid build-up. We should know more in a few days. Other than that our main focus is managing her meds to keep the spasticity in her arms, legs and hips to a minimum. The spasms not only cause pain, they also contort Reesa's body and can cause asymmetry and scoliosis.
Thank you all for your continued love and support!