Goodbye, Survival Mode!

Since November 30th, we've been living in survival mode. Survival mode is just where the absolute basics are done for your family's survival. It is day to day (or hour to hour, or minute to minute) living.

We were blindsided that day by a caring and well meaning doctor. And ever since life has not been the same.

Then we took an unexpected path and to be honest, moving Xander back to formula only felt like a huge boulder that I had to carry... when I was already in survival mode and barely keeping my head above water.

But God has been faithful and extended heaps of grace on us during this time.

Yesterday, we had the sedated MRI done for Xander. It took a ton of arranging between Brandon and I and honestly the whole procedure was a miserable experience for both Xander and I. It was so bad, I will be writing a strongly worded letter to the hospital during naptime today.

After I convinced the nurse that YES, I had a right to get a copy of the MRI to carry to our neurologist (sigh), we finally left and picked up the other three kiddos. When we arrived home all the children went to nap, while I ate and then collapsed for a 30 minute power nap.

Then we loaded everyone back up to go pick up Brandon and drop off the MRI to our neurologist.

Brandon sweet talked the office staff and we were told that Dr. T would be calling us with results between 5:30 and 7:30 last night.

We ran one more errand and then went home to wait for our call.

While I was clock watching, I remember having the most amazing peace wash over me as I flitted around various websites wasting time.

The phone rang, and it was Dr T! He kept his word and was calling with results. And he told us the most beautiful words:

"Xander has no tumors. He has no unidentified bright spots. His scan was unremarkable. The radiologist noted one anomaly... a small abnormal blood vessel, but I cannot see it on my computer, which may be a resolution issue since the radiology department has much better equipment compared to me. I do not feel like he has neurofibromatosis, but I cannot say with certainty that he does not. I see no confirmations though. The next step would be to come retrieve this disk, and take it to genetics."

We asked about the blood vessel and he said that since he cannot see it, he has no medical opinion of it and it may just be an incidental finding. That he just shared the radiologist's findings with us and perhaps that would be a puzzle piece for the geneticist to sort out.

At this point, we do not need to follow up with Dr. T.

We thanked him for his care.. and having mercy on us and getting back to us so quickly! We said we'd pick up the disk this week. And wished him a Happy New Year before we hung up.

And then Brandon and I danced and hugged and jumped around like a bunch of 4 year olds.

Just keeping it real, folks!

Goodbye, weight on our shoulders!

Goodbye, survival mode!

Hello, best sleep we've had in almost a month! We crashed hard.

We still do not have a definite "Xander has x" or "Xander just has tons of cafe au laits." But, we got pretty much the best news we could have hoped for.

And once again, we are thankful for the Lord's goodness!

~Stephanie

Neurology... Not What I Wanted to Hear

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.

~Stephanie