7/16

 Blasted anemia! Got the word that Ethan’s iron levels are not good….this contributes to him feeling tired all the time. So we have a plan in place to boost those levels! More iron infusions. I’m sure we can raise these levels and Ethan will be able to do more. We have a little over a month to get him functioning for college.

We had an appointment with the urologist today. We can check that off of our transplant prerequisite box.  We have to have so many people sign off on Ethan and sign off on myself as well.

Ethan is not looking forward to his transplant. He is certain things will go wrong. I keep telling him no matter what happens there the actions that will occur and the reactions to deal with them. I can understand his fear. We talked about how we can’t control the outcome of the surgery. What ever happens, is going to happen. Moves and countermoves. It will be a chess game. Hopefully his body will behave. If it doesn’t his team will step in and help him just like they did before.

I talked to another mom whose children have medical issues. She shared about how she gets nervous every time she takes her son to the cardiologist. It’s a real thing. We go next week. My guard is up. I just have to remind myself about the moves and counter moves and how it will work out the way it is supposed to. 

I made an appointment to deal with the low platelets with the hematologist. I sent her pictures of what I saw in the microscope from the blood smear I made. She said it’s not everyday she has a mom send pictures of their kids blood cells. 

During dialysis Ethan and I have some good time together. Today we shared a laugh because I could see him struggling with something.

“What are you doing?” I asked

He was trying to one handedly open a Hershey’s kiss. I am not sure why he was just using one hand but he was hard core struggling.

“Eat chocolate” he said.

I don’t know why but this struck me as funny. Going through all that effort for a rabbit turd of chocolate. I started laughing. We locked eyes and he flashed me his big smile. It is moments like these that make the harder times sooooooo worth it.

We have a weekend of fun set up son we are looking forward to seeing friends and pretending our lives are normal for a minute. We purposefully scheduled dialysis today and then not again until Sunday. We can enjoy the weekend.

We spent the evening with friends where we just got to be regular people and enjoy the company too of our friends. We had cake to celebrate the kids graduating and to celebrate some of Ethan’s missed holidays. The heart cake was made to represent Ethan’s new heart AND Valentine’s Day.

It was so nice. Ethan got to be a regular 18 year old and I didn’t have any place to rush to or do it was magical. Don’t take those moments for granted as some day they will be few and far between and you will miss them.

I also received an honorary doctorate! It was hysterical. I am going to include it with my resume some day. Just to make people wonder…..

We are lucky to be surrounded by such wonderful people!