what to bring? {I have no idea what I’m doing but I hope I’m ready}

Update:  The things we brought helped us make it through our China trip, but I didn’t bring enough!  I ended up making some stuff work I found in a Chinese pharmacy!  The people there were super helpful.  Since have Miss J, we realized her case of EB is more severe than we originally thought.  I would not say it’s mild, but she has improved even in the short time we have had her.  Looking forward to a dermatology appointment later in the month, and feeling like I really understand what’s going on with her!

A while back, I got a list from the dermatologist we will be seeing when we bring Julianne home.  He taken a look at her file pictures, and answered all of my questions, but in reality, we just don’t know.

We don’t know the type of EB she has.

We don’t know exactly how severe it is.

We don’t know how much treatment she is receiving for it beyond baths and “green cream”.

So, he gave me a list of items to bring, and I thought I would share in the event that a future EB parent out there is curious.

(All of this is based on the assumption that her case is more on the mild/moderate side vs. moderate or severe)

1.  Alcohol Wipes

Remember using these when your babies’ umbilical stumps needed treating?  Well, here they are again!  Alcohol wipes are first on the list because the site needs to be cleaned off before decompression of the blister.


2. 18 gauge needles

These are to be used for blister decompression.  Or, in layman’s terms, blister popping. 🙂  Poke a few holes in those bad boys, and relieve the pain associated with them.  Especially if it’s a blood blister. You don’t need a whole syringe, just the needle end. I’ve heard that the best storage while traveling for used needles is an empty water bottle.


3.  Gauze Pad

Once said blister has been decompressed, there will be some *stuff* to clean up.  I have taken to referring to this as “blister juice” in my mind, but I realize that’s a little gross.  Since I lack a technical term, however, “blister juice” stays.  Could be clear, could be blood-tinged, could be blood.  Depends on the blister.  The gauze needs to be at the base of the blister before you poke your holes in it to catch the drainage.


4.  Non-stick bandages

This part is important for EB kiddos.  Cannot just slap a regular bandaid on these little ones.  Cover with some petroleum jelly if needed, and then attach the non-stick bandage using self-sticking medical tape.

bigger ones for bigger needs...
Bigger ones for bigger needs… I also got some smaller ones.


Lastly, we have heard and been told that Crocs work well for these EB littles.  We know that Julianne currently doesn’t have backs on her shoes.  Whether the orphanage staff cut them out for her, or if she’s just smushed down the back end to make her shoes slide-ons, it works.  Crocs are nice because the strap can be pulled forward, and avoid friction on the back of the foot.


Might as well have cute Minnie Mouse Crocs if you’re going to be a “Crocs & Socks” kinda girl. 😉

So, there you have it!  I won’t ever post pictures of her specific blisters or personal information.  I want to respect her privacy and her right to her own story.  However, I thought that this might give prospective adoptive parents a small idea of what is needed for the daily care of a more mild/moderate EB kiddo.  If you’re a prospective adoptive family looking at an EB cutie, feel free to contact me and I will be happy to speak more with you.

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