Week 2/3

Emotions have still been up and down. We have good days and bad days. Riley tends to feel pretty good during the day, but the evenings are harder. She was having some bleeding and stomach pain which was concerning us. Her labs came back fine and the bleeding stopped last Wednesday so that is good news. She has been dealing with super dry skin, rashes, and acne. She was having some scalp pain which has now broken out into a rash. She has redness and bumps covering her scalp. Her hands also got pretty red, but that flare up calmed down a bit. She describes her skin as feeling very sensitive and we have had to fiddle around with finding skin products that don’t burn and irritate her skin. So far, Cetaphil has been the best. Her doctors prescribed an antibiotic acne cream to hopefully help with some of the breakouts.
More than anything else, she misses her friends. She just wants to hug them! We are all feeling sad about having to social distance. We miss our community.