18 months Flare

Haven't been blogging for a couple of months due to ... our new family member, Meya born early August.

We have been so blessed because the first 2 months of her life was absolute bliss with Eden's skin ... and then they went on holiday to the bush and she came back with the flare of all flares (see last picture) ... she is absolutely distraught  but at least we know she can (and will) heal again.

She's in so much pain at the moment ... just staying in bed ... not going to school (they are as supportive as always and some of the kids are as big bullies as always ... not even worth mentioning what is being said to Eden every now-and-again at school ... you'd think kids will get use to the fact that she's "different"from them and let it be by now ...)

Anyway, at least she can stay home and recover.

Below are a few of the pics taken of her the past 3 months ... she's really had a good skin period.

Holding baby sister, Meya for the first time

Kids with Oumi (granny)

 Playing with cousins

Enjoyed a music festival ... with SA celebrity / singer Bobby van Jaarsveld.

All dressed in white for little sister's blessing

Sadly, she started breaking out again 2 weeks ago... hoping it will lift soon.

Love is the only thing stronger than fear ... and in this case FAITH & HOPE as well.

FINALLY ..... a break!

Since March this year Eden have consistently flared every 2 to 3 weeks ... but we have finally had a break!! We are at the 4 week mark without any flares and her skin is looking sooooo good ... better than it has in months!!
She is now 14 months TSW.

We stopped using all ointments and moisturisers / creams ... and only added a few drops of lemon grass oil (suggested by Isaiah's mom .... genius!!) to a small tub of pure zinc ointment ... can't believe the difference it has made!

We have basically gone through moisturiser withdrawal but felt it still essential to apply this lemon grass / zinc ointment balm to the infected areas as the lemon grass is an anti-fungal and antiseptic. Her legs and arms are still full of sores from the previous flare (the last flare have lasted for an entire month so, you can imagine the skin damage...) but who's complaining??? We are just happy that we have had this break ... Eden is so relieved and all the kids and teachers are commenting on how beautiful her skin is looking ... let's hope this is the beginning of the end of this long journey.

Either way ... we are still extremely grateful to see improvement in body, mind and spirit.

Lymph glands

Okay, so I know everyone that experiences TSW are having enlarged lymph glands ... which thankfully disappear once they are cured.
BUT
Eden's lymph glands have swollen and been popping up everywhere ... behind her ears (it's almost 2cm big), under her armpits, in her groin area, on the side of her ribcage ... that one stands out like a marble.

SO,

my GP ... who completely supports and respects what we are doing have suggested that I put Eden on a course of antibiotics ... just to see if the glands will go down (or some of them at least) ... and if there's no improvement by end of next week then she needs to have blood tests done to rule out any other underlying conditions.

I'm not too stressed about it ... sure she will be fine.
So, she's currently on some antibiotics (urgh) but, I see it as an experiment...there's nothing to lose ... just another flare closer to the final flare....so in my husband's words:  "bring it on"  .... (yeah right lol)

13 months flare

I've noticed a pattern since March this year: she flares every 2 1/2 to 3 weeks and it takes at least a week before the flare starts calming down and she can return to school.

Here are some pics of her skin (currently): 

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The bottom pic of her legs were taken  in a darker area in our house  ... she's not really that purple.

I posted 2 pics of her legs ... the one below was taken today and the one underneath it was taken a year ago ... seems like when she's flaring her skin looks almost exactly the same as it did a year ago.

This is so incredibly frustrating ... I've read about so many people on the forum that are still experiencing these horrible flares 24 to 30 months into their withdrawal.... I truly hope life will turn around for Eden now ... in the very near future ... this has been such a long road and I have honestly thought that by 1 year we would start seeing improvement on a consistent basis ... but instead I've seen flares that come consistently every 2 to 3 weeks ... 

What I can say (on a positive note) is that her skin recovers a lot quicker after each flare than it did a year ago. 

So despite all my whining ... there's still progress and things to be grateful for.

Her most recent flare:

1 year ago

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Progress

Even though Eden is far from healed ... I have noticed large patches of skin clearing more and more on her legs) ... her legs and arms have definitely had it the worst so I am truly grateful to see such improvement.

At the moment it's just the front of her legs ... the back of her legs still need a lot of healing BUT who's complaining? Certainly not us ... seeing where we were and where we are now.

Below is a picture taken at 7 1/2 months: 

And this is a picture that I took on Sunday (1 year mark) ... AMAZING IMPROVEMENT!! 

We are slowly but surely getting there!!! Whoohooooo

Anniversary

Celebrating her 1 year tsw anniversary ... with yummy taco's

CELEBRATING GOING FROM THIS .... (WHILE STILL ON CORTISONE)

TO THIS ... 1 MONTH INTO TSW

TO THIS ... 1 YEAR LATER

1 YEAR TSW

We have finally made it to 1 YEAR TSW!!!!

Eden is busy recovering from a nasty 2 week flare ... she's left with a lot of skin damage, sores etc but the flare is better ... she's still itchy... but the worst is behind us in terms of the past 2 weeks.

We have bathed her in organic apple cider vinegar and recently I've added dead sea salt. Put an anticeptic cream on the open sores and bepanthen baby bum cream on her face ... it's worked miracles for her dry skin the past week!

She's on strong probiotics and trace minerals.

I haven't given her any antibiotics yet as I really want to give her skin time to heal by itself ... but will see how it goes.

She'll return to school tomorrow and got so many supportive messages from the kids in her class and their parents saying how they will be there for her and that she must get well soon.

It makes this journey so much easier.

Below are pics I've taken last night ... still need time to heal but she looks a lot better than 2 weeks ago.