Calmer skin ... seriously??

Calmer skin ... Really? That's it?!!!

Yes this is what Eden looks like when she doesn't have a terrible flare up ... and yet a good day ... is no walk in the park for her.

I've kept her home for today ... and might also tomorrow ... she's itchy and not sleeping well (insomnia) ...

Eden's legs ... looking good considering how it use to look 2 months ago ... it's slightly shiny because she applies ointment on

This picture looks a bit weird ... Eden bend forward so I could take a picture of her lower back area.

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.

Cheesecake!!

Eden stayed over at her ouma (granny) on Saturday as I had to work in the morning ... when I fetched her that afternoon she was COVERED in a red rash .... in her face ... and especially around her mouth ... and I knew without any doubt that she ate something she wasn't supposed to ....
The culprit was .... Cheesecake!

Suffice it to say ... I was not impressed ... as this was not the first time I've asked the two to be careful what they give Eden ... and for the time being to avoid certain foods .... especially the next three weeks as my sister is getting married and Eden is going to be a mini bridesmaid / flower girl and I know how embarrassed and self conscious she gets when her face is flared up ...

Yes I do realize flares are inevitable during Cortisone withdrawal ... but I definitely find a connection to her eczema (above her top lip) and the food she eats...and that wisdom with what she eats does help alleviate some of the discomfort.

So we need to be wiser with regards to that.

Having said that .... I also realize that the Cortisone have to work out of her body first and foremost before we can even begin to connect the dots as to what she is actually truly allergic to because at the moment this girl is allergic to everything .... or sensitive to everything.

Her tummy has a constant redness about it (also her arms, legs, neck and some parts of her back) .... but during a flare it gets a lot redder ... hotter ... burns a lot more .... thankfully .... at the moment her skin is ... a bit calmer... she oozed (water running out of her skin) during the past week ... especially Saturday ... her clothes were soaked ... in all of this we have to just remember how amazing our bodies are ... and it's capacity to heal itself ... and that all of these symptoms (no matter how unpleasant) is actually a very very good thing.... and it will pass.

Calmer

Her flare started and lasted for 2 weeks ... she was home for a week but it seems as though the flare have subsided for the time being and her skin looks and feel calmer ....

On the photo you can see a pic of Eden with her brother ... his skin is snow white compared to hers ... there's a permanent redness over her body and with flare ups it gets a lot redder and even hot to the touch ... at the moment she is looking well enough to go to school ... and she's happy ... which is more important for me.

We know another flare will hit ... that is as sure as clockwork but we also know it will pass and she will be able to function again for a little while.

During the next week, Eden is going to be incredibly busy with school tests, school projects and eisteddfod ... I'm shocked at how busy little 9year olds are in schools these days & amazed at their capacity to juggle it all.

The dreaded 3rd Month

Yes it has arrived in all it's glory!! ... The 3rd month ... and as we've been warned ... the nasty flare up have started .

Eden is now 3 months Cortisone Free and in A LOT of pain!

The red burn is spreading like fire over her body ... her skin is tight ... red ... hot ... and itchy.
Her eyes are swollen, face is flared, mouth is flared.

I kept her home today ... might send her to school tomorrow.

At least we know that this will pass ... she had her first major flare up around 6 weeks ... and that was terrible ... we thought it would never pass ... but it did ... and this time we feel more prepared...not that it makes it any easier....but we are more relaxed this time around.

Now for the good news!!

Even though Eden was so incredibly sick with her first major flare up right in the middle of her exams ... she still managed to make her school's top 20 grade 4 academic learners  ... with 6 distinctions!!!)

We are so proud of her ... and love her so very much.

Back 2 School & starting to flare up again

After a 3 week holiday and staying at home due to terrible flare up 3 weeks prior to the holidays ... she's finally back at school today....so all in all a SIX WEEK "holiday".

Her tummy and chest area is flared up again ... I'm guessing the next full on flare up is going to hit us soon but at least we know it will pass ... and so far she's been incredibly blessed with her recovery. Everyone at the Itsan forum says months 3 to 4 is bad ... and we are heading into our 3rd month.

Below are some pics of Eden during the holidays (she had her friend Kyra visiting). This was the highlight of her holiday as it made her feel normal again ... while Eden's friends are doing everyday normal kid stuff ...Eden is recording her feelings and dreams in her "dream journal" ... all about being normal and eczema / cortisone free ... for good.

So having Kyra over for a couple of days helped Eden to forget about her problems and just enjoy being a little girl.

2 Months Cortisone Free

2 months Cortisone FREE!!!!

Eden's been very emotional, itchy and sore the past few days ... 

We've seen improvement (3 weeks ago she wasn't even at school due to the pain she was in) ... now she's looking a lot better and will go back to school after the holidays.

She's reached that stage where her skin gets so dry she can't straighten her arms properly because it cracks open.

AGAIN ... I must emphasize ... There's HUGE improvement!

My sister saw her for the first time in 2 months the other day and was shocked at the difference ... she said it looks as if someone poured porcelein dust over Eden because her skin is so white (on her face) ... not so much her body).

I guess ... on a scale from 0 to 100 ... Eden is probably 10 % healed.

Her legs are still red at the back and upper thighs ... in fact it runs down her calves. She's got sores (from scratching) from her hands up to her arms, the folds of her arms especially dry and painful....and the rash have slowly started spreading to her back now.

She often cracks and leaks fluid ... and it smells ... strange.

Something else that is shocking to me is how much weight Eden have lost.

She's on a gluten free diet but we have cheat days ... especially when she visits her granny :) (below is a picture of her tummy 2 months ago and what it looks like now) ... I guess she was so bloated from water retention due to the cortisone use.

Eden started a private diary (she calls it her Dream Diary) ... in it she writes all her wishes / dreams. She tells me that unfortunately she can't read any of those entries to me because then her dreams won't come true but she did tell me that it's mostly about her skin and that she wants to be normal.

It's the hardest thing to watch the self confidence in your child go from average to zero...but  I keep telling myself that this is temporary and one step at a time ... at least she's still very young and we've started this journey long before she's a teenager.... I can only imagine how difficult it must be for teenagers.

We've also moved into a new house and Eden has a bedroom with no carpets in ... so happy about that as it's less dusty that way... she sheds skin like crazy and this way we can make sure we sweep up all the dead skin in her bedroom.

So basically ... in a nutshell ... the past 2 months have been incredibly exhausting ... busy ... crazy with a roller coaster of emotions...but we are 2 months cortisone free and not looking back.

All-in-all ... we are happy despite life's challenges.

almost 2 months ago when we started our journey

1 month ago with Eden's first major flare up

Currently... Eden's skin looks a lot better already ... weight loss is shocking.

Eden's face 1 month ago with the major flare ... this BURNED!

currently.... managing a smile again