New episode of Butterfly Talk ready to view! In this episode I talk about the bandages and miscellaneous products that we use to take care of Nicky’s wounds and well-being.Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 264Read More →

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 →