08/09/2021
Good morning, if you have requested one or ordered from me recently, catalogs are on the way! Our journey with Cassie has gotten very complicated in the last month so to keep some separation in life I decided to create a page for her. If you want to keep up to date with everything follow along! Miss you all!
Things have moved really fast this week. We are so grateful for our growing team of specialists. Friday we found out cassie's peabody standardized test showed that she has been stagnant in her development for almost a year. This was one of those things that we knew but seeing it in writing was hard. The last 4 months we have seen her regress in potty training and eating etiquette as well as her behavior. It has been hard as parents because you know she can do something but won't. The good thing this test did was show neuro where we were. They contacted the pediatric metabolic geneticist and explained the urgency of us being seen before September. We now will get seen on August 17th. Then yesterday we received Dr Shah's full report from Cincinnati Children's. He concluded that Cassie has moderate hypometabolism of the cerebellum that is causing most of her balance, coordination, vision and ataxic cerebral palsy. This reinforced her neurologist's suspicion that we are dealing with a rare in-born error of metabolism. In short cassie's body is not feeding her brain enough to create the energy it needs to function properly and her brain is slowly starving to death.
If both of her specialists are right it would mean her epilepsy, vestibular nystagmus, mild ataxic cerebral palsy are all symptoms of her brain's metabolic disorder.
I think we are headed in the right direction but it is so terrifying. We are hoping that we can move quickly with testing from geneticist before she starts regressing in her cognitive and speech functions as well.