Waiting it out

So Monday was the big day. The day of answered questions, wisdom, and direction. The doctor, Dr. Seigler, was wonderful. Great with Emalee and just an all around great guy. He did some tests with Emalee for examination purposes and then asks us if we are aware of what is going on with her MRI scans. We reply that yes, we had been told about the cyst and we wanted to see what his opinion was as to who we needed to go see next. He looks at us as if we are not on the same page and replies that he believes the cyst is a non-factor, her EEG is perfectly normal, and the test he did with her were normal . He does not believe it is what is causing her symptoms. He believes we should just have scans about every 6 months to make sure it doesn't grow significantly and if she develops headaches then he will want to see her again. WHAT?! And so it was our turn to look like we were not on the same page with him. So I proceed to ask him questions like: then what is causing her sleepiness, weight gain, and falling when she is laughing. He tells us that he believes we now need to have a sleep study to rule out possible narcolepsy/cataplexy. A lot of times, patients who exhibit symptoms of falling down during strong emotions such as laughing, crying, or feelings of excitement, will lose control and fall asleep due to cataplexy. He also says that there could be a chemical/hormonal imbalance in her body that is causing her excessive weight gain, so we should also go see a pediatric endocrinologist.

We have taken the doctors instructions and been having Emalee weigh each morning. It is amazing that her weight can fluctuate 2.3. or even 4 pounds from the day before! The poor girl is just miserable in her skin!

So I am on it starting tomorrow to push to get in with the sleep physician, which I happened to meet with on Friday by divine appointment, and make sure that the pediatric endocrinologist receives the referral to get her in asap. Although I am not totally at peace with the decision to leave the cyst be, due to my "knowledge" I received on the internet, I will follow doctors orders and check these other things out. Hopefully, the sleep study will happen within the next couple of weeks while Emalee is out of school and some of the testing etc, with the endo will be done as well during that time. I know that she really wants to be back at school with her friends and learning. She really misses it....Kealyn, on the other hand, thinks it is just unfair that Emalee doesn't have to go to school...ugh!

Thank you so much for your continued support, kind words, and most importantly, your prayers. We are definitely feeling them. Emalee has covered her desk in her room with notecards with scripture on them. She is meditating on them day and night and believing that the Lord is doing big things in and through her. She is a champion and once again, I am so honored to be her mother.

Blessings to you all as we continue to PUSH for our sweet Emalee!

Much love,

Amanda