Many of you will remember Naomi as the incredible young woman who was President of Interact last year, business woman, dancer and musical talent. Unfortunately Naomi has been ill and was unable to complete her academic year at Western Washington University. The following is an update from her mother CherylAnne:
Long Naomi Update:
Naomi is entering her 5th month of dealing with frustrating, life-altering health issues. Many of you have been asking for updates and I am sorry that they have been so infrequent. But, the challenge is that there is so little we can say to update you. The lack of information and slow progress with test results and Dr. appointments is really wearing Naomi down and fielding questions is beginning to take a toll on her. At the same time, she is very grateful for all the concern so many are showing her.
She is still waiting for results from the GI tests that were taken on Aug 22. She should hear by this Friday if anything has shown up. Her appointment with the UW Cardiologist was very good. While her heart is situated differently than normal (which is why the folks in Wenatchee were unable to read her echocardiogram and we went on another wild goose chase), it is still a very healthy heart. Her symptoms are most likely not a result of her unique anatomy. I’m relieved it isn’t her heart.
Her symptoms continue to morph and change, some getting better, some worse. Right now, I’m concerned about her spirits. She will not be going back to school this fall.
Several people have asked about Lyme’s Disease. She is hopefully going to be tested for that and mono this week. She has an appointment set for mid-September at Children’s, and a neurology appointment set up for mid-October.
While the doctors we’ve met with have been individually wonderful, it is really frustrating how challenging it has been to get her any help. Progress is incredibly slow. Communication between facilities is non-existent. We are getting lessons in advocating for ourselves.
Hoping to have real news soon. If you ask her for an update and don’t hear back right away, don’t take it personally. It’s just hard to repeat the same non-info over and over…defeating. However, feel free to message her with encouragement.