4/20

Today was our first full day home....for good!  It went well. Ethan had his remote session at 9:00 for school. When that ended, we left for Strong Hospital.

We met with the pediatric nephrologist at strong. Ethan weighed in at a whopping 96#.  He has about 34# to go until he gets back to his pre transplant weight. 

Unfortunately we have to do dialysis right at Strong. It’s a bit of a hike and right in the middle of the day. I do t understand how people can work with this arrangement. We will find out at some point. Luckily everyone seems nice.

This was an issue I was trying to convey to Ethan’s nephrologist in NYC.  They said he needed a pediatric nephrologist. But he has to have dialysis on a stretcher AND at the hospital. There are only two time slots. 8-9 am or 12-1:00.  These are start times. At an adult facility, they have all times of day. Early in the morning to later in the evening. Much more practical for Ethan and myself once I go back to work. 

Then Ethan had his 2 hour tutoring session to try and catch up on lost work. He was a trooper and did very well.

Tonight we had Taco Tuesday. With Ethan’s diet restrictions it was more like nacho Tuesday. Ethan had lost weight over the past week or so because withdrawl sucks.  Tonight his body decided it was acclimated to the wean and his appetite was awesome. 

I was able to get a haircut and color tonight. It was so exciting. It has been almost 6 months and my hair was a mess. I had to cut it short because it was so unhealthy. I didn’t care to much. Short hair dries quicker. I like it. It had been way to long for me to neglect myself. My hair looked like someone had set fire to it, it burned a little bit and then they put it out with a broom by whacking me several times....other than that....it looked great.

Tomorrow is bloodwork first thing. As long as I have coffee before I leave it will go nice and smooth.

My bright spot today was everything. Taking care of my dogs. Starting a fire in the wood burning stove, making dinner....who thought I would have missed these things so much?