It’s been a while since I updated everyone on Nicky’s health. So, here I go. Because of the COVID-19 all kinds of appointments were cancelled, but Nicky does have an iron/blood infusion in early July and an esophageal dilatation on August 24th, so he does have some stuff happening soon. We did have a couple of “virtual” appointments and a couple of “phone” appointments which were interesting to say the least! Nicky even attended a few sessions of Camp Wonder online since Camp itself was cancelled. Boo. Nicky missed camp last year because he was in the hospital, so that made it two years in a row that he missed Camp. He was not happy about it, but everything seems to be cancelled this year. The major issue he has right now is indeed throat problems, he cannot swallow his own saliva at times and it’s really hard to goRead More →

I started taking Nicky to CHLA (Children Hospital Los Angeles) in the summer of 2004 when he was 8, following my attending the EB Patient Conference in Palo Alto, where I met a rather eloquent and “well versed in EB” hematologist who opened my eyes on something Nicky was dealing with and I knew nothing about. He was severely anemic. I always gave Nicky iron orally or in his tube, but he was increasingly becoming pale and lethargic. After I met this Doctor a light bulb went off in my head. I made sure his pediatrician did blood tests to check his iron levels and she immediately referred me to him. To him! An expert in EB! I could not believe it. This doctor practiced at CHLA, he was actually a local doctor for us, amazing.  Having a child with a ‘orphan disorder’ makes you deeply, and I do meanRead More →