Thursday, January 21, 2010

Prayer Request

Hi everyone.

I have a prayer request to send out. 

Does everyone remember Elly?  I introduced her to you back in November.  Well, her Mom Emelie has been so sweet with sending me messages on Facebook of sympathy and encouragement. And I know it's an inconvenience  for her since Swedish is her first language so to type in English is not her 'norm'.  Well the other day she messaged me that Elly's biopsy results have shown that she has the Herlitz form of JEB.  Which is not good news.

So please pray for comfort for Elly and peace for Emelie.  I know what she's thinking and feeling and it's not something any mother should feel.

They are such a gorgeous family.

I was looking over Emelie's page and (through an online translation) saw how she described the situation as Elly being a ticking time bomb.  And that is such an excellent description of the situation - whether that was truly what she meant or just the translations interpretation, I don't know - but nevertheless.  Not only do you have to handle an EB baby like a bomb: ever so gently, ever so lightly; but it really is like watching the fuse move closer ..... and closer .......
And you just never know when it's going to explode.

This morning Emelie messaged me asking about what I did when Leah had her corneal abrasions ...... apparently Elly's eye is red, swollen and tearing ...... sure signs of an abrasion.
And then I checked my Facebook again and saw that Christina (Evan's Mom) is taking Evan to the doctor because of his eyes.

Ugh ............ friggin EB ...... can't you give these kids a break?!!?!?!?  Just like, a day, or a week without their skin blistering and their eyes hurting and nails growing up rather than out, and throwing up the little bit of food they're able to get down. 
I hate EB more now than I ever did before.  When Leah was here my mind, heart and emotions were all on her ...... it was just like "Ok, this is her life, this is our life, we have to deal with this and keep her happy".  So I didn't really have the time or energy to really hate the why behind it all. 
But now that I do ....... I hate it ....... I really hate it.

Alright, this turned into a lot more than just a prayer request.
And as always ........ please remember to pray for little Tripp.  He had to have a longer trach put in due to blistering in his throat around the trach. 

Junctional EB ....... if you were a human being I would've beaten you to a pulp a long time ago - and then ripped your beating heart out of your chest and thrown it into a meat grinder. 
Ok .... enough of that. 

And before I forget ............ thank you to everyone who have sent cards, be they either the cards we received just after Leah's passing, or the cards being sent to my parents house.  I haven't had the chance to go pick anything up but my Mom said there is a card from France (!) and a package from Texas.  So whoever you are out there ....... thank you!  I have 2 big butterfly-themed scrapbooks all ready to go for placing everything in.


Linda said...

Hi Love:
So sorry to hear about Elly. Elly and Emelie will be in my prayers. Tripp is always in my prayers along with all the other EB children.
You are not alone with hating EB. Everyone who learns about this awful disease, says the same thing, I never heard of EB. We will educate and maybe, just maybe awareness will equal a cure. I sure hope so anyway.
Take care and remember God loves you. Love you my dearest daughter. Love Mom

boltefamily said...


Tracie said...

Sending many prayers to Elly. And, ofcourse, to Tripp and Jonah!
Also, still sending prayers of comfort to you.

Marie said...

Can you give the link to Emelie's site? I do speak Swedish so I'd love to pop over and offer some support to the family.

EB is the worst disease I've ever heard of. I actually saw another EB mom write that there are worse diseases than EB such as ALD...even though EB kids can live longer than other diseases like ALD I think EB causes the most suffering. You can't compare them but EB is the worst thing I can ever imagine.

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