Friday, November 26, 2010

Clothing EB

In the early days finding clothing and diapers was among the great issues we were to deal with.
While in the hospital Raqu was basically naked but for her diaper.  Two sizes too big and wrapped loosely around her waist.  Not to mention how slathered she was in Aquafor.  We'd go through one to two containers a day depending which nurses were on duty.  It seemed crazy as no spot was left un-greased. 
The Aquafor Glaze

Ren and I both fretted over 'how was her skin supposed to breath or expel sweat toxins etc'...  It's a great product but enough is enough!
On the other hand, if all the goop wasn't there our early clumsy handling could have been much worse in effect.  
Since day one her healing has been exceptional.  Less so on the original areas of her lower leg to upper foot.  There the skin was seemingly close to the bone and still seems nearly translucent, yet fortunately building.  Up until recently it didn't even look like any muscle developed in those areas.  Now, for most part those areas up the shin are getting much better and are mostly recognizable by a reddish colour and the little white Milia dots that seem to surround any of her larger blisters.
Ren's sister did some very good leg work in Czech and found the Derma Silk supplier or manufacturer in Italy.  Barely a week old and she was already having some Italian silks sent from Europe.  
My imagination runs often, as I had a vision of a mysterious woman (Raqu when she's older) in long white flowing dress and pants, long white gloves, a large brimmed hat and sun veil draping loosely down her front, her face barely visible, but for those big and beautiful eyes.  She had become a fashion mogul in this daydream and was walking elegantly along the Promenade in Nice.
It turned out we were sent a large package of outfits, tops and bottoms with some leggings.  There were also a few cuts of the fabric to make what we will, included was a large piece of a breathable bedding material, which unfortunately awaits it's final form.
I have to admit after reading about the derma silk and thinking it was the wonder fabric for almost any skin condition to underwear for skiing (it always comes back to skiing).  I was a little disappointed that it seemed coarse.  Far from the smooth satin image I was seeing Raqu walk down the Promenade in. 
We didn't dare bring it into the hospital for her to wear, as it would have been ruined in seconds by any number of care givers and the kilo a day Aquafor glaze.  
Only in our final moments as we were packing up and after our last bath and dressing change in the NICU, were we finally able to dress her in her silks.
Raquel in her Derma Silks

In a couple days it was clear the material was amazing. 
We choose not bandage the blisters she gets on her back or chest anymore .  This is due to the two times we were advised to put a full torso wrap, which of course creates more blisters in other area we really don't want blisters to appear. With the silks the wounds heal quickly as with the other bandaged places at her hands and feet. 
At the moment she has a big sore on her back larger then a toonie (1 1/2" in diameter), I copied what my cousin once did with mole skin for her feet while ice-skating.  
I cut a hole in the Mepilex to go around the blister then just pulled her Derma Silk outfit over top.
Another bonus is that no fibers make their way into the healing skin and within days the scab falls off naturally.
Once home, friends and family started the search for what to give a new baby of EB.
We tried to say to everyone, 'please don't, wait till we figure it out!'.  Besides, there is the fact Ren has four or five large plastic containers full of kids clothes making it very difficult to get into our laundry room. (I just counted, there are 8!!)
Not everyone got the message or thankfully payed attention to our request.  Due to this fortunate glitch in communication we were then put into contact with Jean from Little MoSo.  
Jean came over to our house on a few occasions, once with her beautiful little gaggle of kids keeping Coco happy, as we talked about the benefits of Bamboo.  She gave us a few pieces of sample clothing and some one of a kind pieces for Raqu.  Coco wasn't forgotten in this either as she has some nice little pieces she wears often.  It was great and a little overwhelming as we'd never met Jean before and she was taking plenty of her spare time between what appears to be a busy life to help out our little Raqu.  
Like our friend Simona (a retired OT) who was instantly after her mental development within a day of birth, Jean was focused on dressing Raqu comfortably, practically and most of all beautifully.  Ren and I certainly had other things on our mind.  Likewise , both women keeping us up to speed with normalcy in the best way available to them. 
Raquel in Little MoSo

We eagerly await what's next with Little MoSo.
For those in Vancouver, check out Little MoSo during the One of a Kind Show at the new convention center on December 7th weekend.  I'm quite sure you'll like what you see.
Great kids clothes, from exactly the kind of business and person most would love to support.

1 comment:

  1. thank you so much for sharing your story Ryan.
    xoxox janet, jayde, lyric and savion