TSW Healing Journey

 

Went to Legoland on Christmas for two night stay. I didn't notice any itching while there. Yet when I checked on his bed there were dry skin flakes and dry ooze mark on his pillow. He did have an itch attack on the way home we had twenty minutes to go. His neck was itchy. It was about a three hour drive. While he said his neck was itchy I noticed it was reallyreally dry. A hive popped up on his forehead just one. I had him put his window down and stick his face into the cold wind and he said it felt better. We have a wedding this Saturday that he is. The collar will be on his neck and I am just not going to button it up. We will be in and out of the wedding I asked my cousin if they can take pics with him once the wedding is done so we can go home and he can be more comfortable in his pjs. We have not travelled like that to Legoland since 2017. It wasn't as bad as I thought it would be. I made sure we were prepared with everything and if things went wrong. It was worth it. We a

We just woke up. Diego came to sleep with me I guess sometime this morning. Woke up around 10ish. Past seven days I noticed more red dots on his face this is one side. Usual when he wakes up the right cheek oozes. Yet this morning I noticed his ear this one was bad then gets fully healed and now this. His neck was one spot now it's spread. It was almost healed the dots on the other side our the same and I remember this happened in Jan before it got worse. My anxiety is high and sadness is setting in. Diego is acting normal happy full of energy and life. Not really itchy. Sleeping through the night. Weather has been cold here in Florida. I just don't know. We have a trip planned in two days. This is what I didn't want to happen. Out of all the last few months of healing skin a freakin flare sets in. My heart feels heavy Sent from my iPhone

When the Major Flare really started looking back it's an anniversary flare

 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

Sunday Full of energy this morning. He slept at 10ish last night woke up at 845am. Didn't wake up to an itch fest. He slept so good. We don't moisturize and I don't think we ever will. Let his skin breathe. Lotion didn't bring him comfort, didn't take away the itch or the ooze and didn't cause him pain either. So we just let it be.  Sent from my iPhone

May 2. 2018 My birthday was May 3. 2018 Diego started on oral Prednisolone I think last week of April. His pediatric derm Dr P was seeing us every single Friday. After his ER visit on Feb 28.2018 for asthma attack he developed eczema on his eyelids. It was so bad he woke up his eyelids were glued shot. I would carry him to the bathroom. Wait for the water to get warm and gently scrub it off. Diego said it hurt. My heart hurt. We tried him on Singulair after that ER visit and wow the immediate change in his happy crazy personality. He told us I don't want to sleep I'm scared. I was thinking what the hell is going on? He had tantrums like toddler cry out sessions that week and his eyelids were so itchy he itch in the backseat when I drove. I called the Pediatric NP and said we had to stop. I already done research on singular. So we went to a pediatric ophthalmologist. There's only one in our city. $220 each visit. She prescribed an ointment for his eyelids and he screamed

31 Months TSW Sent from my iPhone Anxiety I have never experienced everyday anxiety till Diego started TSW or month prior. I read Bible verses to calm mind and this one is a big one. I will sleep with Diego tonight so my husband can sleep in and get much needed rest. Before sleep I look at Diego's right cheek and there is blood and ooze and it soaked a small amount on his pillow. I just bought those pillows to off Amazon. It's not like in 2018 when his pillow would be covered in fresh or dried ooze. Yet it gives me anxiety increases my breath and I feel the panic. I fill my mind with all the amazing things I find in Diego. Things I didn't think would happen two years ago.  He is happy He is energetic  He keeps saying Mom Watch this and I kinda have to hold my breath for a sec He is fearless It's like TSW was the worst of it and he has no fear he just goes for it He is a great dancer He has rhythm He is not on the couch watching Ryan's Toy Review  Or Playing that dra

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

We had a long day. Diego slept through the night. I woke up at 630 am and thought wow Diego slept through the night and slept hard. I prayed and told  God how grateful I am for this rest.  This right cheek has been a slow burner but we are still living life. I have to say I'm glad when we do "normal" things and wear a mask this part is covered and protected. Time for bed. Have a final to study for. Hope this blog helps others going through this and give hope