Thank you to those of you who prayed for Noah's appointment at UCLA today. It turned out to be a significant appointment. After months of genetic testing, the doctors were finally able to give a diagnosis for both Noah and Mel. They both have what is called Desmin Myofibrillar Myopathy. They are excited to finally have an answer - especially this one which they have been waiting for for so long! They also found out that Noah's heart team thinks he will be getting his new heart soon, so they recommended that Hannah's surgery be scheduled ASAP.
There will need to be many appointments in the coming days and weeks - for Hannah to decide a surgery time, for Noah's next heart cath, and with the geneticist. Mel will give a more in depth update sometime soon. Please continue to keep them in your prayers during this time!