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 →

Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. When Nicky was only a wee bit lad (I am watching too much British/Scottish period drama, I am starting to speak like them!), I noticed that swallowing was particularly difficult. So difficult, in fact that it would take him a few hours to finish a bottle. By the time he was 3 years old, I needed to put a towel over his pillow because overnight he would soak it with his own saliva. Solid foods, or even mushy/baby foods had become an impossibility from the time he threwRead More →