Wednesday, 14 August 2013

Gratitude ... memories ... and withdrawals.

I decided (seeing that Eden's skin is calmer for the time being) that now is the time to express my gratitude ... it's so easy to get caught up in the negative, difficult, painful emotion of this exhausting journey ... (just saying that sounds exhausting) that I sometimes forget to count my blessings ... and express gratitude.

So this is me ... wanting to shout out to the world how grateful I am despite getting down in the dumps at times.

I am married to the most wonderful man ... I couldn't even have created him in my dreams ... and somehow our paths crossed ... and we got married... it's almost our 2 year anniversary .... it feels like we've been married ... forever with all the trials we've had ... but the beautiful thing is that our love deepens DAILY ... every day I'm with him .... I genuinely love him more than the day before...he is truly the only man for me ... my soul mate xxx

Then we had our beautiful baby that was born at the end of December last year (now a fatty almost 8 months old) ... despite sleepless nights (which miraculously) we don't have much off and teething aches and pains (which is also under control) .... he is just a happy happy happy baby...probably because he's naked most of the time ;) 

My little 6 year old Caden ... is truly a blessing and light in my life  (and everyone that meets him) ... he is the most obedient, kind, loving, gentle soul ... he is sooooooooo naive it's hilarious !! and YES ... in the picture below this one he got hold of markers ... and well .. what do boys do when they get hold of markers?? They draw spiderman webs on themselves of course.

Then their are my two step daughters ... what a long way we have come ... and yet from the beginning I have never been treated with disrespect ... they have handled the adjustments of a blended family with so much grace! So much growth, acceptance and kindness that I have felt from them ... coming from a divorced family is not easy ... and both had to deal with it ... and struggled at times ... but the way they have accepted the adjustments ... how they LOVE the three younger siblings ... and the determination they have to make life work for them ... is inspiring....they are beautiful inside and out.

Then there's my beautiful little girl.

My only flesh and blood daughter ... stubborn and difficult as can be .... but learning to submit and humble herself ... and obey ... she's gone through so much in life ... in such a short time it's sad ... and yet ... I believe this will be for her good ... and that there's a reason behind it all.

Eden is my first born ... and I have beautiful, precious memories with her ... seeing this blog is dedicated to her and her struggle to deal with cortisone I have added more pictures of her ... a glosarry of her life and the various stages and ages:

Eden as a tiny ... fat 2 month old getting blessed. My mom holding her...very proud moment for her.

As Eden started to crawl and handle different textures it already started to affect her hands and she would refuse to let her hands touch grass or sand ... so I put gloves on her hands ... seems to do the job at this stage.
Having some fun painting ... she wouldn't use her hands but a paint brush as the paint irritated her skin ... at this point she was already using prescribed cortisone mixed with a water based cream.

This was Eden's 4th birthday ... the rash already spreading more and more ... (see the bumps on her arms) ... I think it was right after this when the Doctor's started giving her a stronger oral and topical cortisone (Betanoid syrup, Elecon, Advantan etc) ... she was still very tiny here ... but in the next pics she started ballooning from the water retention of cortisone.

Christmas (she was 5 and her face a lot rounder ... at this point she was on cortisone for 6 months non stop ... and we thought it was working well ... not knowing what we were in for).

About 6 years old ... still a little chubby bunny

She was on cortisone in all of these picutres ... but it never lasted for long ... she would always have a flare up as soon as we stop the cortisone use ... give or take 2 days.

This was what Eden's legs constantly looked like for the past 3 years ... always with infections ... no cortisone would work for long .... and as soon as I stop using it ... she would flare up.

Finally this year April 2013 we decided to stop COLD TURKEY the cortisone use .... and it's been difficult.

This is what she looks like so far:

Weight is gone ... she is soooo skinny now compared to what she was ... her skin is still red, bumpy, itchy, burny and flaky .... but we are almost 4months into withdrawal ... and I know we are on the right path .... and so finally that is what I am grateful for .... The Itsan website and forum .... without everyone's stories that is so willingly and generously shared with the world on the net .... we would still be lost.

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