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May 05-11

This Week

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I’m terrible at updating 😬

Well- Since the surgeries in January, I developed what they call a fistula. It’s basically an open wound from the skin into the body. They can be caused by different things but they said mine was simply due to the surgeries in the same area and an internal stitch possibly came loose during the healing process and built up fluid, which then created a pocket of fluid on the skin. I went in because it was super sensitive and the Dr. lanced it open and found that it was indeed a fistula and was a bigger wound then they thought. Although it’s really not “big” at all. It’s probably the size of a large marble, but not a shooter marble. So I need to pack it with gauze and change it 2-3x a day depending on drainage. I also need to irrigate it and keep it clean with a wound cleaner they gave me. It looks good and has been getting better, but could take a few months. 

Also- I had scans a few weeks ago and unfortunately there were a few tumors that have popped up. They are small. One is located on/near my “butt muscle”, one is on the outer part of my hip bone and another inside the hip area in the soft tissue but near the bone, but not IN the bone. I have started an immunotherapy pill called Everolimous to hopefully stop the growth of the tumors or even shrink them. I have been on that for about 2 weeks. With this medication, it lowers my ability to heal, so the fistula I have may just take longer, and it also lowers my immune system and make me tired. I’m taking extra Vitamin C to help along with Essiac Tea. This tea is packed with antioxidants and vitamins. It is not something you can buy in the stores - it is all natural and 1 serving is only 1 ounce and it is suggested to take 1 ounce twice daily. It also helps “detox” your body without lots of bad side effects. 

I am also trying/hoping to get my prosthetic going again. After the last surgery in January, I need to get the socket remade. That is the part the fits onto you, so if you have any change in weight or have surgeries it could change the fit of the socket. I would be going to Chicago as I feel like that is a better option for me. I have been in contact with some awesome people on a Facebook group I am part of and a lot of people recommend going there. Now it’s just to find/make the time! Therapy is ideally 2 weeks but I would go for 1 week and then come home and practice and go back when I have time. I just can’t be gone that long. I would have the socket made by the same person who is teaching me to walk so I believe that will be really beneficial. I would pretty much be with them all day every day learning to walk. I would like to go in June but with Maxx playing hockey and baseball and other plans we have I just need to find a week that works best! 

The rainy/cold weather has been bugging me and affecting my phantom pains and muscles. The Dr. said the weather could affect me in the same way that it affects people with arthritis. I just get achey and then the phantom pains kick in. I’ve been needing pain meds mostly at night but sometimes during the day as well. So that’s been fun 😬..I’m hoping for sunny and warmer weather soon (I never thought I would be saying that haha).

Overall things are going good - Maxx is still homeschooled and is in a summer hockey league and has started baseball as well! Sawyer and Gianna are still in daycare and they are doing good. Sawyer has lost both of his front teeth and is starting to spell/read small words “mom” “dad” “and” ..so that’s exciting. Gianna has been doing “learn2skate” so she will be following Maxx with hockey - not sure what Sawyer will be doing yet.. 🤷‍♀️

Not much else. We don’t need anything at the moment but I know people are always asking..I have the link below for gofundme and we also have a home chef account as well. We do appreciate everyone’s continued support and appreciate all the thoughts and prayers! 

Home chef link: the email associated is ditz_627@hotmail.com and it’s Diana and Andrew Johnson 
Gofundme link:




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