12/31/2020




 

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LIST OF THINGS WE TRIED OR STILL DO not in any order updated as I remember! 8.13.2022

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Cut nails every other day Scrub nails in the morning with small nail scrubber Vacuum every day. Mainly his bedroom and other rooms most of the time. Wash bedsheets and pillows in high heat. Dry in high heat. Everyday. (we've been through two washers and two dryers last two years)  Ordered four pairs of Scratch Me Not sleeves. Washed daily high heat and high heat dryer. Diego sleeves were soaked through out the night so I had extra to change them out quickly after a scratch session. He only wore these at night in bed. Grassfed Beef everyday made in olive oil, with minced organic garlic and organic white onion with salt Organic sweet potato cut boiled and smashed with his grassfed beef White rice started May 2020 Take pictures every day or every other day. Same time of day same angle same lighting and label with date Glutino pretzels Home made organic french fries baked in oven with olive oil and salt March 2020 to Now outside in sun as long as we can High dose Sodium Ascorbate sprin
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10 MONTHS TSW: February 8, 2019

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10 MONTHS TSW 3 WEEKS AFTER PREDNISOLONE DOSE 1ST DOSE OF 2019 This picture popped up on my album. January 10/11, 2019 Not sure the date we took Diego to the ER for the first time that year. I don't feel like explaining the whole situation at the moment. He ended up taking prednisolone and w head to finish a course at home. I remember crying when they presented the treatment to us and Diego just didn't seem to get better. I looked at my husband and I know we were both saddened but breathing trumps everything. So his skin did get a bit better and all the moms told me to enjoy this "honeymoon" phase because it won't last long. It didn't. I think around this week he would scratch his arms hard and intermittently throughout the day. I was frustrated. TSW skin started where we left off. Then just got worse
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Diego outside during the day for the first time in 2018 after starting TSW

 In October 2018 we were getting in the rhythm with Diego’s stage of TSW. I was getting ready to go back to work. I wasn’t happy about it but my FMLA ran out pretty quick and my job was short handed. I also felt comfortable going back to work and leaving Diego with my husband. We had friends and family take turns  picking up our daughter from school. It was worked out. This video popped up on my memories. This was the first time Diego wanted to go outside voluntarily. It was almost Halloween and I was worried he would not want to trick or treat. He woke up ate breakfast and I had the sliding door opened a little to let the breeze in. He said mommy I want to go outside. I said YES lets go. It is so hot in Florida and humid. The only time we ever went outside was night time around 8pm. I would have him scooter around the court. I even asked on IG for letters so Diego would walk to the mailbox and get them. Friends sent cards with stickers and even toys. Diego received so much support in
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