The MRI/MRA, at least preliminarily, looks like what was expected. (3 Calcium deposit spots, which is an indication of Tuberous Sclerosis) We will hear the final "read" of it tomorrow.
We met with the genetic counselor today and they took blood to complete genetic testing. We will know those results in 4-8 weeks. A genetic testing result doesn't change the way we will move forward with our treatment plan for Oliver. It does help us with considering having other children and perhaps will tell us more about the severity of Oliver's TS.
We are hoping to be discharged tonight- we really want to be home. There has been some communication challenges in getting us the seizure meds and instructions before we leave. If we don't get satisfactory instructions on the meds we will not leave. Apparently the instructions are somewhat complicated and the medications must be given precisely as described.
Thanks again for all your prayers and love!!!
1 comment:
Steph, please call my friend. She is a wealth of knowledge and a genius (really!). Her son has been on what seems like every seizure medicine under the sun. Some are great, some are horrible. Text me if you want her number! Praying. Love you.
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