Monday’s Update! – Day +110!

It was the longest we ever sat waiting for labs, but well worth the trip! After running an hour late for labs, they moved us right from the lab chair to the dr’s office for our scheduled appt.

Our visit with Dr. Pawlowska began with a physical exam and some chit chat about Naomi’s progress including her huge increase in appetite, high energy levels, celebration of Day 100, daily bike riding, concentration in homeschool, and a hike up a mountainside and rock climbing. Dr. Pawlowska jumped way ahead of me and asked what we should do about the line. I told her that I was going to ask her the same question today.

She said that it was time to take it out and that I could choose to have that done at COH or at home. I elected to do it at home with Dr. Fiore who placed it back in December. I really like him and trust him.

At that point, the conversation turned to include Dr. Rashid in Vegas. She will help us get the line removal scheduled, hopefully within the next two weeks.

On May 19, we return to COH to see Dr. Pawlowska again. After that appt, we will only make monthly trips to COH, seeing Dr. Rashid during the in-between period. It will work that Naomi will see a doctor and have labs drawn every two weeks, but each one only once every 4 weeks. Unfortunately, she will need poked for these every two week blood draws, but, as Dr. Pawlowska said, she can play without the line being in the way and swim over the summer. Removing the line also removes the largest risk for infection.

Dr. Pawlowska also allowed me time to discuss my fears and paranoia. She assured me that Naomi’s engraftment is “really, very excellent” and that Naomi does NOT need to wear masks anymore. The doctor encouraged me and said that I do well letting Naomi play outside and be as normal as I do. She believes that helps recovery. The tendency is for us parents to shelter. In fear, we erect walls around the child and prevent them and ourselves from moving forward.

After our talk yesterday, I have decided to live each day to its fullest and try not to be overcome by fear. Naomi has had so much prayer and blessings that we cannot help but be thankful.

Our drive home last night ended up being close to 6 hours long due to the bridge over I15 that caught on fire and then collapsed. We detoured around it. I have never seen such a scene. South of the bridge, traffic crawled for about 20 miles and the sides of the road looked like a parking lot. In some areas, cars were driving over the grass to get onto a dirt road beside the highway. I was able to get behind a fire truck and cruise easily for about 5 miles in the left lane while the four lanes beside me went absolutely no where. Then, I had to stop as I approached the hill and saw no one moving anywhere. After watching three more fire trucks and a dump truck pass, I went online while sitting at a complete stop, and read about the collapsed bridge. I was fortunate that there was an emergency vehicle turn around spot about 200 yards ahead. I exited the northbound highway by doing a u-turn there. It allowed me to go south to route 138 and get onto a detour route. I was quite surprised more people were not doing the same. My legs were so sore from the long drive. I will be glad to make it only every 4 weeks in the future!



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