Ethan has a busy schedule today (everyday). He was up, ate, blood draw, dressed, and off he went to OT. I am not sure how we are going to factor tutoring into this schedule. He had recorded himself last night to prepare for him to upload a YouTube video. WiFi was proving to be a bit of an obstacle (which will make schooling an issue).
He started to upload his video and had to go to rec therapy. I started laundry which is in the basement. I walked by where he was and saw him playing air hockey. What a great idea. It is really cool to see how far he has come from where he was.
His video had uploaded by the time he got back. If you would like to watch it please visit:
On our video visit with Ethan’s cardiologist yesterday, I shared that one day earlier in the week, Ethan urinated 100 ml’s. Still not a lot, or anywhere near normal, but it is still trying. She was very pleased. We will see what happens from here. He is now technically in Chronic Kidney Failure.
We ate lunch and Ethan was whisked away to PT. I had the bag packed, paperwork set and was ready to go by the time Ethan returned.
We went to dialysis and they pulled off 2.7 liters. Ethan often is tired afterward. We got back to the rehab and Ethan decided to do two flights of stairs down to go to the vending machine. After some Doritos, he decided to walk two floors back up. Wow!
We got back to the room and ate. We then found out that Ethan needs an injection to help him with his low white blood cell (wbc) count. Normal is 4.5 -11. Ethan’s is 1.6. The injection will help stimulate the production of white blood cells. With a low wbc’s he is at risk of getting an infection that the body wouldn’t respond to. He could get a septic infection with no fever, no warning signs and it can become dangerous very quickly.
Ethan was frustrated because he has become a pin cushion and he is just tired and rightfully so. He got the injection. He was brave. He wants to have a moment of peace with no interruptions, introvert goals.
We are looking forward to a quiet tomorrow.
Sounds like a very busy day!!! The video was awesome. Hope today will be a little quieter. Love you both
ReplyDeleteLoved the video. Ethan, you are the most amazing and resilient person I have ever seen. You are an inspiration and a constant reminder of how we should all be living and appreciating our lives. Keep Kicking Ass, we are all cheering for you!
ReplyDeleteEthan the video is awesome. Keep kicking ass, we will see you walk across that stage at graduation.
ReplyDeleteEthan- your YouTube channel is amazing! I was tearing up while watching it and smiling at all the sweet, caring comments you inspired. There is so much love surrounding you (even from strangers on the internet)!! You are so very brave for sharing your story. It is going to help so many people in so many ways. Your passion to create videos and a merchandize shop is beyond inspiring. Your mom and family must be bursting with pride. Your life, your personal story and your extreme medical journey matters so very greatly. You look fantastic. It seems that the worst is behind you and it's only going to get better and better from here. Lots of love always!
ReplyDeleteEthan you never cease to
ReplyDeleteamaze us! You are such
an inspiration to so many !
Your message on You Tube
was really great.
You are helping so many
others showing them what a strong Will and Positive
.Attitude Will Do. You are
giving everyone a “Gift”
of Courage, and Strength!
You are that “Engine that
Could “ He kept saying
“ I think I can , I think I can,
I know I can”.
And that’s what you did !!!!
Love ❤️ and Hugs 🤗
Awesome video! Keep on kicking ass! It wasn't that long ago that we were thrilled you could sit up on the end of the bed, now you're climbing stairs! You got this.
ReplyDelete❤💛❤💛❤
That video was awesome! You truly are amazing and such an inspiration, Ethan. Your videos and courageous story, of all you’ve been through, will help so many others. You’ve already helped everyone following your journey...more than you know. Keep crushin it and kickin ass! ❤️
ReplyDelete