Wednesday, December 28, 2011

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!



Robin said...

Praise God for good news!

mark cowperthwaite said...

so happy for you. Praising the Lord that your family can get back to normal even if it is a new sense of normal.

Debbie said...


Ben and April said...

We have been out of town so just catching up on my blog feed. This is so wonderful to hear!!! The Lord is good!