Tuesday, January 18, 2022
Monday, January 17, 2022
Thursday, January 13, 2022
Girl Scouts
We had a fun evening. Being a Girl Scout leader is so fulfilling. These girls are so fun and their friendships are growing. They are all from different schools and come together for a purpose…to learn, grow, love themselves, love others, protect nature serve God and their Country.
Tuesday, January 11, 2022
Neurological Exam
Emmalee had a follow up Neurology appointment today. We discussed the results of her MRI and EEG. Several months ago I had mentioned that Emmalee seems to stare and space out sometimes. We have been noticing it more and more and others have seen it as well, including her feeding therapist who put a note in last week. I have suggested that maybe these are “Absence seizures” which was the reason for my concern. Nothing was found on the 30 minute EEG. While looking at the structures of her brain, the Dr. stated that Emmalee has an “on the smaller side” Corpus Collosum which is the structure that connects the left and right brain. It affects all people differently. This appointment was an hour long and we talked about a lot of things. The Dr. checked her reflexes and muscle strength. Emmalee has significant weakness on her left side as well as minimal/ limited reflexes and Hypotonia. At this point, we have determined that it is definitely neurological. We discussed her need for occupational therapy, her hypotonia, genetic testing results and the push to get the Full Exome Test completed. While we were talking, the Dr. Slid her chair over quickly and jostled Emmalee and used her knuckle to massage her ribs to snap Emmalee out of another staring spell. It lasted about 8 seconds and the Dr. suggested it was a “Focal Seizure.” The Dr looked at me and asked me if that is what we have been seeing and I said “yes.” She seemed very concerned and ordered an overnight stay at the hospital for a 24 Hour EEG to monitor her sleep, behaviors, wakeful periods, restlessness, aura’s or epileptic pre-cursers and recovery. They will also be looking at her stamina, weakness and hypotonia. We pray for answers and clarity. Just when I feel like things are settling down and we are able to breathe, we come to another fork in the road and have to make another decision. It can be exhausting and tiresome but I will follow the Dr’s lead on her care and help her any way that we can. So now we wait for the call for scheduling. Thanks for all the positive vibes and endless love. We feel it and are so grateful and blessed.




































