Ethan’s Journey

I started my day off early. I was walking into work and it was still a little bit dark out. I had not had ANY coffee.  My brain was thinking of  several different things and I was entering the building. The beeping of the security system greeted me and I punched in the security code.  I punched the code in like it was our garage door and not the business. The alarm then detected it was wrong and escalated it’s alarm sound to panic beeping. I started panic pushing buttons because it was before 6:00 am and I didn’t want the alarm to go off. So then the alarm went off. You would have thought we were in for a nuclear attack with the hideous, repetitive, pain inducing squeal of the alarm.  I felt hot. I immediately started sweating.  I panic buttoned pushed to correctly type in the code….multiple times. Oh geez the poor neighbors. Finally the alarm stopped, along with my potty mouth. Phew! We had Ethan’s hematology visit today. It took about 45 minutes to go over what has changed since last

These work days with dialysis are long and tiring. But I am glad they are balanced with good days mixed in. Ethan didn’t complain of any soreness today. He was on his feet a bit yesterday. He also had a very busy day yesterday, so this is ideal. Yeah! Tomorrow we go to the hematologist to see what they say about Ethan’s lack of platelets. I am looking forward to it. It should be interesting but also it will be nice to find out what we can do to get those numbers up.  Ethan is feeling better and eating better. His weight has gone up a little bit and we hope to keep up that momentum. Ethan still struggles with his sore tongue where he bit it during his seizure.

Today is my birthday. For my birthday, i took Ethan to get lab work done. This doesn’t sound overly exciting but we had the best conversation in the car about how even though he has suffered a lot in this past several months, the bright spot is that we both have a profound understanding of living life to its fullest and just dealing with whatever situation arises and moving on.  I got to take Ethan to visit his friends at The Little Speed Shop. It was quite a gift for me that he felt well enough to go. He spent a few hours there. He was quite tired but he was excited he pulled it off. We will see how he feels tomorrow. I really was so thankful for the day I had. I got to spend time with each kid, as well as my nephew, and I saw my brother, his wife and my mom and Gene had us over for pizza and cake. I smiled and laughed a lot. It was fun. After dinner we arrived home and Paul and I sat on one of our swinging benches swearing at the loud traffic that went by (like a couple of old people

I had a busy morning tracking down Columbia invoices, calling to try to resolve those, calling in medication refills to a couple different pharmacies and collecting all the paperwork I need to submit for Medicaid. They pretty much want a DNA sample. I need to make lots of copies of documents including the last 3 months of medical invoices. I will be sending them a phone book of invoices. Yikes. I took Avery to get her work permit because she wants to start making some cash to put towards a car for herself. She is excited to pay taxes. (Not really). Today Ethan got to visit with his cousin, Jason, whom he hadn’t seen since before the pandemic. It was good to see him. Ethan said that yesterday and today were the first time he has felt a little more energetic in weeks. This is quite exciting. He is going to visit his friends at the Little Speed Shop soon, hopefully. I love to hear that. 

 Ethan tinkered with his remote controlled car today. I was very pleased because he hasn’t really had the umph to do much of anything. I was just glad he was doing something he enjoyed. He is still quite tired from his anemia and covid vaccine. We go to the hematologist in a few days for more insight. His eyes were bright today. He found his joy and that made me happy. Now he needs to start eating more calories.

Today was a dialysis day. Ethan hasn’t had dialysis since Thursday. He hasn’t gained any weight since Thursday. That means no weight (which isn’t ideal) but also no water weight (which is good). He is peeing a lot more now. About 600 ml per day. His kidney is not cleaning his blood or telling his bone marrow to make more red blood cells. His kidney is like an unemployed 30 year old living in Mom’s basement playing video games (useless). I was able to submit the final paperwork for one of Ethan’s scholarships. Cross another thing off my list. My back is still pretty sore but I have done LOTS of stretching and no ibuprofen. I started some of my old physical therapy exercises to help. We will see how it feels tomorrow. Motion is lotion. Ethan had a fun weekend and I am happy for that. I am hoping he feels a little more peppy soon. He had another iron infusion today. I am hopeful.

The weather was beautiful and we were able to enjoy it to the fullest. Ethan had a graduation party that he went to. He went with his friend and then had a couple friends over to the house afterward. Ethan felt pretty decent today, which is good. It is probably because he got so much sleep on Thursday night. The covid vaccine is settling down in his system. All good things. Avery went tubing with some friends and she had a blast on the lake. She fell off the tube a couple times but they had so much fun. She ended her tube ride by falling off and slicing her toe. We patched her back up but she was done riding at that point. Days like these are the rewards. Today I felt like I received a great award. Both my kids had fun and it felt like we were back to “normal”.  I also don’t want to forget to mention that Paul was full of it this weekend and constantly made me laugh. He is hilarious.