Thursday, 16 January 2014

Back to school

Eden is finally well enough to return to school:
Her skin is looking better than ever (still have spots and parts that need to heal but she has the most beautiful milky white and a lot of parts are soft skin at the moment).
She's sleeping better
Shedding less skin
Still slightly itchy
No open sores and infections
and just generally very happy.

We met with the principal and Eden was excited (and scared) at the idea of returning to school.

When she finally returned to school (Yesterday the 15th) she burst out in tears in front of her class mates but her teacher kindly comforted and reassured her that all will be okay and since then she's been all smiles and happy spirit.

She told me today "Mommy, I like looking at my face in the mirror" ... and she even pretended to be a swimsuit model as she was wearing her swimming costume ... it was amazing to see.

We are not pushing her too much (i.e. athletics try outs are a no-go at the moment and if any bullying happens the principal wants to know about it). When flare ups hit, she will be allowed to stay home until she's better.

And then Eden's little brother also started grade 1 this year so she's super excited to see him at school as well.

All-in-all ... I feel very positive and excited about this new phase of life ... and extra excited that Eden is so positive.

We have come such a long way ... it's been so incredibly exhausting ... so, I am just incredibly grateful for this turn of events.








Tuesday, 7 January 2014

Big year ahead

We've been away on a much needed sea holiday ... but it turned out it was exhausting  (still very nice though).

Upon arrival, Eden's skin looked like this: flared up and irritated and slightly infected again.




But as soon as we got to the sea, Eden (who doesn't bath), bravely jumped and splashed into the sea and the amazing healing properties of the salt and the ocean cleared the infection up in a day!!!

Unfortunately we had to endure a lot of sun (December is the hottest time of the year in SA) and hence Eden got a bit too much sun and got slightly sun tanned ... which resulted in a flare, peeling and insane itching  ... so we kept her indoors for the last couple of days (went for beach walks in the late afternoon but that was it).

Here are some pics of the first week of our holiday (Eden enjoyed it, despite her skin and no one stared as everyone else was sunburned and red LOL!!! ... so she looked pretty normal)





Towards the end of our holiday, Eden mostly walked around with her umbrella shielding herself from the sun but at least still finding a way to enjoy herself.


Oh and did I forget to mention that Someone had her very special 10th birthday just before Christmas ... lucky girl ... she doubled up on gifts this year.


She also sat on Santa's lap and asked him if by any chance for Christmas she could have a healthy skin ...  Santa was so kind he asked us if he could please pray for her (which we allowed) and it was just such a magnificent moment to show children that even the Great Santa ... prays to God (who is the true Healer and Giver of gifts).

Then on New Years Eve our family decided to lit a lantern and send it into the sky ringing out the old and in the new ... hoping the new year to bring health, miracles, happiness, peace and normality.

As my husband and I stood on the balcony of our holiday home toasting the old year away with some sparkling red grape juice I just broke down crying ... it felt like 8 months of tears I have just held in, trying to be strong, carrying Eden and myself ... and everyone else that's confused and worried about her condition ... it was tears of a long, exhausting and intense year and just absolute relief of knowing the year has ended.

This might actually be the year when the end of TSW is in sight.


After 2 weeks of holiday, sun and sea we are back home  ... and currently Eden's skin is looking beautiful compared to before the holidays started:

Can still see the elephant skin on her elbows:


face is looking beautiful and clear

neck is more clear

Despite the spots, her arms look a lot better and less red 

tummy is perfect and soft

back is similar to her arms witht he spots and thick pinkish skin

legs have been the slowest part to heal but even here it looks a lot better

also elephant skin, pink skin and spots but the infection and flare up is gone for the moment. As always so incredibly grateful for the light at the end of the tunnel.

To all our fellow TSW sufferers:

May this year be the year of complete (or almost complete) healing, happiness, health, peace and prosperity for all who suffer from TSW...may your one day (in the near future) reflect back upon this time and see the growth that have occurred, recognize the blessings that you received and cherish health and the precious gift of your bodies... that you can all become a strength and a pillar to others who are suffering ... may this trial never break you ... and if it does (because it might) ... may it do that only to build a better you again.

All our love
xxx