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.

EMINEM

 

Anderson Received the Priesthood

Anderson received the Priesthood today and was ordained a Deacon. He will begin passing the sacrament next Sunday. He is able to attend Yong Men’s activities and we are so proud of him.

 

Emmalee's Well Child Check

Emmalee had her 2 Year Well Child Check Up…(I know, we are 6 months late. We chose to delay her immunization schedule until her blood work levels were a bit more stabilized.) Today she is 27 lbs (38th percentile) and 2’11” tall (40th percentile.) She is now up to date on her immunizations and was such a brave girl. Barely fussed. She is meeting many milestones and we are hopeful that with time and therapy, she will continue to thrive. We have another evaluation coming up with a developmental pediatrician, a neurological follow up, an appointment to be seen by an endocrinologist, one more set of environmental allergy tests, OT once a week, feeding therapy every other week and we are working on getting Speech set up. We are so proud of her progress. Emmalee is such an amazing, strong and resilient kiddo. We love her so much.

Caralynn

I won’t always be the center of Caralynn’s world. I’m trying to soak it all in. She wants “mom” to put her to bed, she wants to sit by “mom” on the couch. She draws pictures of “mom.” I’m more often than not included in her little thoughts. It won’t last and will seem like a blink of an eye. The days are long but I’m working on being intentional with my children and give them each a part of me and as much of me as I can. Caralynn is the most demanding of my time and sometimes it’s hard to fill her cup and meet her needs appropriately. I’m so grateful for her forgiving and kind nature. She is so precious and beyond anything I could have ever dreamed. I will cherish these moments together.

Just Hanging Out

Emjoying Winter Break