Nicky Updates, June 2020

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 go day by day with this issue for him. He cries often because of it. He throws up a lot. I told the Dr. that if they have any cancellations we need the dilatation done earlier than 2 months from now, so please pray this happens!! PLEASE!!!

Wound-wise, we’re about 6 months into using the CBD Oil on his wounds semi-religiously and it has kept them down to a fair amount. The biggest wounds Nicky has are on his left arm and his right knee. They are both very ugly and BIG, and they have shrunk, maybe just 1% each bandage change, but, hey, we’ll take any improvement.

I suppose the biggest concern right now for us is this virus. I just don’t feel safe. I don’t know how to make sure Nicky stays safe. I may feel paranoid, but the cases are not going down, if anything they are spiraling up again since things are re-opening because there are people out there that still think this is “just like the flu” and don’t want to wear masks. I keep my distance, I don’t touch anything and always wear my mask. N95 nonetheless. I order everything online, even groceries, everything gets delivered.

Ok, allow me to vent a little bit. I had a “friend” (read: acquaintance that I never met) on FB that raised a question about if anyone “knew” anyone that got the virus. Since she had other “posts” on her wall that defied the validity of the virus, I suppose she wanted to know if this was for “real”. When I replied that I did (a mom I met at Camp a few years ago had 3 family members hospitalized due to COVID-19) she asked what type they had and all of that, as if to dismiss the soundness of this particular case somehow. As if my friend, who is asking for prayers for her family in the hospital, would tell anyone exactly what “strand” of the corona virus they have? What?

How sad is it that people only become actually “concerned” that this is REAL “only” if they know a person with it or one of their own?
This is the same reason why we need awareness for EB. Because it’s rare and nobody knows anyone with it, so, why care? One thing for sure, we need to become a more empathetic and compassionate society. Cures involve money and time. What if it was your child, your nephew, your spouse that had a horrible condition that needed a cure? Wouldn’t you want anyone you meet to know about it? Awareness leads to a cure, there is just no other way.

Having said that, I am always in awe at the level of compassion shown to my son. Having a son with EB has taught me that there are truly a lot of caring people out there. Those that don’t, sometimes just don’t know how to show it. At least, I hope that’s the reason.

Stay safe everyone!

Love & Light,

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