It's taken me some time to figure out how to share about this appointment.
It was stressful. The doctor did not reassure us as I hoped.
I'm not 100% sure what Brandon expected when we went but I know what I hoped to hear.
I wanted to be told that our gastroenterologist was overreacting.
I wanted to be told that Xander's birthmarks were not cafe au laits.
I wanted to hear "Nothing concerning here, Mom. Hope you never need my services again."
I didn't hear any of that. I know.. I was in denial.
Instead, our doctor raised his eyebrows and wrote alot as Brandon and I exchanged worried glances at each other. He said he was very concerned but that it wasn't anything to send us through the ER for. (The office is attached to a hospital- if you go throught the ER or are admitted you can have procedures done faster.)
Instead we got more referrals. He is concerned about Xander. He did reassure us that most patients with neurofibromatosis do well though.
Instead, he ordered an MRI and an EEG. He referred us to a pediatric ophthalmologist to have a full exam and an exam with a slit lamp to check for lische nodules. And we got a referral to genetics.
Basically, we are gathering information and then a geneticist will put together pieces. There are a few other conditions that the cafe au lait birthmarks could point to.
He told us that this is going to be a multi-disciplinary, multi-specialty process. He warned us that this may be a long road. He did tell us that he thinks Xander's tummy troubles are completely unrelated. That was reassuring. He urged us to be mindful of our stress level and to take care of ourselves and our marriage. He also reminded us to treat Xander just the same.
Brandon and I had done enough research that we pretty much expected all he said except for the EEG. When we got home, I walked to our bedroom and laid face down on my bed crying. I so badly wanted to be told that there was nothing concerning.
We have no idea how this story will end. We are still hoping for the best. But we'll do whatever he needs.
Now, we are waiting to hear when the MRI and EEG are scheduled. Please pray they are scheduled soon. We've already met our maximum out of pocket for our whole family (this plan started June 1st!) with Brandon's insurance through his current employer, but we will only have coverage through his current company until December 31st. Either way, we know that God is the ultimate provider!!
We were blessed with an appointment with the pediatric ophthalmologist for this afternoon. What a blessing that we only had to wait 2 days.