I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you can post ‘some’ photos, but there are limits. You can only post one per blog and it shrinks it down to a minute size. There is also a limit of 100 photos per blog. So if it’s a post that involves photos I do it here. Yes, I could do it on Facebook, but I refuse. Facebook has deleted way too many EB wound photos and even blocked me for doing so for me to trust them anymore.
I wanted to show this photo of a blister that Nicky got recently on his leg (It did go all the way around the leg). I found it funny that Nicky said ‘That’s the biggest blister I ever saw!” What? Ha Ha. I don’t think so! Not even close! I think he said that mainly because blisters nowadays go immediately to ‘wounds’, and he’s had wounds 10 times the size of this, so I found it amusing. I also reminded him of when he was 2 years old and he had a blister that was as large as two fists in his chest and traveled to his back to be just as big. Or when he was a newborn and he had a gigantic blister that went all the way down his arm in its entirety. This one was tiny in comparison. I wish I would have taken photos of them back then to show him. Oh well.
The reason why Nicky’s blisters go to wounds so much faster now that he’s older it’s because his skin is so much weaker than it used to be. His back, for example, it goes immediately to a large wound, the skin is so fragile, the moment it starts filling up it breaks on its own it’s an open wound. Kind of a blessing in disguise in a way because if they don’t break they keep growing. When he was small, if I would put the skin back over the wound it would heal real nice, but now it’s a waste of time.
Another pic I wanted to show is this one – this is the same leg about 10 days later. When he was small his wounds would go from blister to healed in about a week. Now the story is completely different. We still have some wounds that heal in around a week, but some take weeks, even months. Why you may ask? It depends on where the wound is and the integrity of the skin of where the wound appears. If the area is scarred in any way or red (as you can see on the foot), it may take weeks. If the new blister is in an area that rarely blisters, it will heal rather fast. I noticed though early on, when Nicky was just a baby, that air-drying was a sure path to scarring and weak skin. Nicky has Recessive Dystrophic EB after all, his wounds are similar to 2nd degree burn-like wounds. If left to air dry, they will heal scarred. There is no ‘if’ or ‘may’ in the matter, they WILL scar. If, instead, it heals with moisture, creams and healing agents, it can and will heal to go back to its original state. It may take a while though, but it’s the preferred skin to have because it’s so much tougher and less prone to blister than scarred/red skin. This is why I wrap Nicky so much. To prevent, yes, but to also allow proper healing. I understand other patients do better when they air dry their wounds, that’s fine. That does not work for Nicky’s skin, and his pain levels are also too high when his wounds are in contact with air. Nicky needs to be wrapped. This is not something I like to do or I love to do, but something I *HAVE* to do. Just the way things are and we found from trials and errors for the past 16 years.
It’s the little things, you know? The little, little things.
Okay, I have had some people ask if we have a donation page set up for Nicky and his medical needs… we do not. We sure could have used one when Nicky was born and the insurance refused to pay for bandages which led us to our bankruptcy. Just a slap in the face for being unlucky enough to have a child that is not healthy. Sweet. We do have a lot of co-pays and Nicky loves his videogames, and of course I am unable to work full time due to his many needs. At this point I think the best way for anyone to help us is to support my books. I have two out right now, Special Mommy Chronicles and Living with Epidermolysis Bullosa (which supports and helps me pay for ebinfoworld.com). Special Mommy Chronicles would make a GREAT gift for any Special Need Family, and Living with EB would make an amazing gift for ANY EB family or anyone interested in EB. Not only you will be helping my family and ebinfoworld.com by purchasing these books, but you will be spreading awareness. It will also legitimize my books I am currently writing. The first book I am almost finished with is called ‘Losing Alex’ which is my story about my first baby that was stillborn at full term. I specifically wanted his story to be told because I know I would have loved to hear first hand how another mom dealt and healed after the loss of their child, so I know my story will help other bereaved moms. This new book will only be available for the kindle at first, and it should be out a little before Christmas. The second book is about Nicky’s life. It won’t be out for a couple of years. There is so much to tell and I want it to be comprehensive. I have another couple of books in mind to write later on and since I can do this from home it’s a great way to help my family. But if my books don’t sell, it defeats the whole purpose. So, if you could support my books, that’s really all I want. I would SO appreciate it!!! <3
I will keep taking photos and make graphics for your pleasure… you can see them here. In the meantime, thank you for visiting and God Bless,