Thank You for Listening » sleepingangel_andersoncooper2

ebmom This kitty is EVERYTHING 💕 Nicky tells me the k The thing with EB is that it’s so individual. Ev Happy Happy Happy Birthday 🎊 to Nicky’s dad ( From the moment I came home from the hospital with I haven’t posted pictures of Nicky’s wounds in Connor really likes the kitties! I don’t often p Accepting a situation, a condition, and in our cas Follow Me on InstagramRead More →

ebmom

This kitty is EVERYTHING 💕 Nicky tells me the k

This kitty is EVERYTHING 💕 Nicky tells me the kitties make his life worth living 🐾 #catstagram #kittygram #instacat #persiancat #catsareawesome #kitties #kittylove

The thing with EB is that it’s so individual. Ev

The thing with EB is that it’s so individual. Every patient and their caregiver/parent has gone through a lot of trial and error to arrive at the way they do things. Even within Nicky’s body, there are so many differences. I can’t even touch his feet for him to Yelp. Yet, his back is perfect and he often asks me to scratch it for him! Lightly, of course. Every part of his body is different. Some areas are heavily bandaged, some lightly, some not at all. The experience with this rare skin disorder is baffling and we should not judge how others are dealing with this monster we call Epidermolysis Bullosa. We are all in this together ❤️ #epidermolysisbullosa #recessivedystrophicepidermolysisbullosa #rdeb #ebawareness #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #dontjudge #raredisease #raredisorder #skindisorder #loveoneanother

Happy Happy Happy Birthday 🎊 to Nicky’s dad (

Happy Happy Happy Birthday 🎊 to Nicky’s dad (also named Nick) !!! Thank you so much for being such a wonderful father to our butterfly 🦋. #happybirthday

Nicky doesn’t like it too much, but I think he’s adorable as a cartoon!!! ❤️❤️❤️

From the moment I came home from the hospital with

From the moment I came home from the hospital without Alex, following his stillbirth, I knew I had to write his story, and then when Nicky arrived with EB I realized how important it was, not only to raise awareness and as a form of self-therapy, but most importantly, to help other parents know they are not alone in this journey. Writing this book was excruciatingly painful but it still remains my source of pride. Nicky’s journey is not over, and neither is mine. We learn, endure and try to smile ever day. —> http://butterflychildamothersjourney.com ❤️ #epidermolysisbullosa #ebawareness #ebmom #parentshelpingparents #book #bookrecommendations #specialneedsmom #specialneedsparenting #momshelpingmoms

I haven’t posted pictures of Nicky’s wounds in

I haven’t posted pictures of Nicky’s wounds in a while out of respect for my son. Still, he understands how important it is to show them. EB is one of those conditions that need to be SEEN to be understood. For context, Nicky has the “Recessive Dystrophic” form of Epidermolysis Bullosa, the “Generalized Severe” subtype, which is so rare there are only approximately 125 patients with it nationwide in the United States. <3 Over the years some of his nastiest areas have healed thanks to various products which include CBD oils and steroid creams. His arms were absolutely awful but they were doing great after he got the genetically modified skin grafts @ Stanford - that is, until his body rejected them. His body makes zero collagen type 7, so when it was introduced it didn’t recognize it and started making antibodies for them. This unfortunately means we cannot introduce it into his body anymore. This really sucked for Nicky because he was the only patient in that trial who didn’t benefit from it. Dr Woodley last week prescribed Nicky some gentimicin antibiotic which in theory should help his body in producing some tougher skin, and we are eager to try it and hope for success. The steroid cream has helped as well. My worry right now is that Nicky is not weaker but more fragile than ever before and his pain has exponentially increased in the past couple of years. 10 years ago I would only give him pain meds every once in a while, now is 24/7 and heavy narcotics to boot. It’s scary. It’s all so scary. Not sure I mentioned lately how much I HATE EB. #rdeb #recessivedystrophicepidermolysisbullosa #collagen7 #cbdoil #steroidcream #skingraft #stanford #ebwarriors #stopeb #cureeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #wounds #healeb #geneticdisorder #skindisorders #rarediseaseadvocate #raredisorder #ebawareness #graphiccontent #worriedmom

Connor really likes the kitties! I don’t often p

Connor really likes the kitties! I don’t often post photos of my youngest son, but he’s really amazing and handsome and he’s going to be 18 in September and a Senior in High School! Where does time go?

Accepting a situation, a condition, and in our cas

Accepting a situation, a condition, and in our case this monster we call Epidermolysis Bullosa, and also hope for better days ahead, a resolution, a treatment, a cure, are not two mutually exclusive things. When we face something traumatic the only way to truly move forward is to live one day at a time. Hoping for a better tomorrow helps us focus on today and give our best, try our best and living our day to the fullest and help us sleep at night. Besides, why wouldn’t I want a cure for my son? What kind of mother would I be if I didn’t? #cureeb #ebresearch @ebresearch @ebmrf #ebmrf #wefighteb @wefighteb #fighteb @charitydebra #stopeb #epidermolysisbullosa #ebawareness #geneticdisorder #raremamas #rarediseasemom #specialneedsmom #momsofinstagram #specialmomclub #mamas #motherhood #hope #hopingforbetterdays #ebmom #ebmama #ebmomma @debrainternational #medicalmama

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