AND OUT OF THE BLUE: 31 MONTHS TSW


 December 16, 2020
Wednesday
10am ish
While he is playing Pokemon Go
I turn to look at him and notice his cheek
out of the blue

Comments

Post a Comment

Popular posts from this blog

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

Image
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...
Read more

Mini Flare

 Diego has been doing well all over compared to where we were in 2018. He is now in third grade getting straight As. He is has made good friendships in school and outside of school. He is going outside running, and playing in the hot Florida sun all day. We are back to our trips to the beach.  I have noticed he has finally started sweating. So interesting the body. While he was getting better around 2021 going to Crossfit Kids. He would get hot but no sweat. Last week after playing outside all day he came in for a water break and he was sweating around his face and hair.  November 2023 after Thanksgiving he was having his asthma flare.  It got so bad no matter what meds we threw at him it wasn't cutting it. I took him to the ER and got the normal three albuterol treatments and oral steroids. From August 2023 till the end of November 2023, he was off his flovent. I am not sure if it is the weather change or one of his teacher's classrooms that caused his asthma to go ...
Read more

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 su...
Read more