Happy Anniversary Isaiah! One YEAR topical steroid free!

 

ONE YEAR STEROID FREE! 

What a YEAR!

and what a MILESTONE!

 

There will never be enough words to describe the 

past twelve months of our lives.

So much has happened that has stretched me in ways I could have never fathomed..

Looking back,

especially at the suffering and the pain

it is an absolute miracle we survived:

physically

mentally

and emotionally..

It has been a season that I don't think I will ever fully understand but I do look at the new people God has 

placed in our lives..

some across oceans.. 

and I do see 

His PURPOSE...

I see His divine will threading us together with 

complete strangers 

that in many ways now seem more like 

family..

Connecting, loving, sharing, crying, caring, understanding..

as there are not many that 'get' a season such as this 

unless you're the one living it..

**********

***********

Every year during spring, I clean off the back porch and 

winter's barrenness

and love to get my hands dirty in rich soil..

I always had a pair of hands and 

little fingers in the dirt with me.. 

The above pics were from 2011..

The planter pots were my great grandmother's

and every year up to 2012, we always filled them with elephant ears - Caladiums - and loved looking at them all season.

When she was alive and had them on her own front porch, 
they were always filled with them and I can remember their beauty as a child sitting with her in her old green rocking chairs shelling field peas and butter beans.

In 2012, I was pregnant with Isaiah and had quite 
the miserable pregnancy.. 
I was nauseous and sick almost the entire 9 months.

That year there were no elephant ears planted..

and then in 2013, there were almost 3 entire seasons: 

spring, summer and fall 
where I did not even look outside the windows of our home

unless we were in the truck 
headed to the doctor or the hospital and 
that is no exaggeration in the least.

I remember thinking:

"It's practically been one. long. winter. ...'
 

One awfully long, cold, dead, dry winter..

A winter that I will never forget and one that 
I don't ever want to re-live.

 *****
As Isaiah's health started improving so much and we began to breathe again, life was coming back to each of us 
and back in our home..

Things are now a new normal.. :)

For months, as many of you know, Isaiah stopped meeting his milestones and was labeled 'failure to thrive' 
all due to the topical steroid use and withdrawal as an infant.

Because of that, he did not start crawling until he was 
almost 10 months old and in November, when his health really started heading in the right direction, 
we were almost 8 months TSW.. 

That is when he finally began gaining weight and we saw an even bigger shift than the one he had when we left Emory in August.

He was still very itchy, red and raw on much of his skin so we kept him strategically corralled in our living room by the furniture and the toy and gauze bins with a super large California King flat sheet on the floor..

We had to use the sheet as a covering over the large rug and carpet as he would sometimes scrub and rub his face across the sheet to itch his cheeks.

During that time was when the infections were a daily battle and there was a lot of open skin, so we really didn't want that sweet little face sliding against the carpet.

He caught up really well and really fast as he began walking at 13 months just like his big Sissy.. :)

He has had fantastic skin since we kicked that infection with the homemade Lemongrass balm in January:

Click here for our Etsy shop and our Lemongrass Balm

 We have still been bathing and wrapping him to help with the itch, now mainly only once per day.. 
so glad, as I remember only a few months ago he lived in the baby bath, soaking up to 12 times per day!

I forgot to turn on my date stamp on some of these pics but all of the following ones are from March 2014 - 10 months TSW..
Best month yet since Dec..

 
(the boo boo on his nose is not TSW..
he fell into his toy box - regular kid troubles! :) )

His skin was so beautiful on many of these days, all the way through the end of March..

His little neck that had been really red the entire time was showing clear skin finally!

He was even getting some of the beautiful skin tone back that he was born with..

  

Soon, it was very hard to keep our 
Little Climber from trying to scale the bins and the furniture to be as free as we all were.



We opened up the big playroom down the hall 
as that was a new adventure for him. 
He was soon running, keeping in Sissy's footsteps and usually tripping us all up, 
hanging onto pants and legs as little ones do.
We have now removed the bins and opened up most of the house to him. He is no longer scratching his face on the floor..

 

  
Such a blessing!
He is also eating many foods and so far has shown no reactions..

another blessing!!

He is still on Neocate daily but really likes fruits and veggies
and so far loving everything he has tasted except kiwi:)

He loves rice and gravy with potatoes and carrots and would have licked the plate if we would have let him, last time he had it! 
..after Neocate for the past few months, 
I can't say I blame him!

In the beginning of April he started a light flare
much like the ones in the last few months..

No ooze.. just redness and slightly heightened itching..

This one seemed to affect his hands the most, as they had been quite clear and looking pretty good up to that point..

 

He had a little redness come back up under his neck as well.. 

He actually was able to go outside and enjoy the sun in nothing but crocs and a diaper!
 

First time ever!

That week my daughter and I made it out to the back porch..
we re-potted and planted..

It felt so good to do that again!

The back porch is beautiful now!

One of the plants my husband bought me bloomed that week..

The end of that week, he began to get really pale and cranky

and I sensed he may be starting another flare..
I had not seen him pale like that in a long time..

This one came on pretty hard and quick..

much more so than the last few months..

Within 4 days, his face was super red..

much more than I had seen in a long time..
It actually cracked open and looked wet..

I can't really call it ooze, as it was no where near the oozy patches he had in the past, but this was definitely the worst flare he has had in months..

I actually had to give him Wal-Dryl in the middle of the night for 2 nights that week, 

and I had not had to do that since January..
:(

 

 By the 18th of April, he was feeling better and the flare was drying out and beginning to flake off..
Those were the biggest skin flakes I had seen in months..

It actually started back a few days later and carried into May, but nothing like the previous months.

 ********

At this point he is out of wraps ALL DAY - only being wrapped at night, which is a huge milestone in itself!
He actually wore short sleeves last 

Sunday for the first time EVER!! 

We were so excited!

He is doing so well, and although he is still withdrawing, he is feeling more and more like a "normal" child..

our lives are definitely headed OUT of this season.
He is happy and laughs and plays every day and we know we will soon be able to get back to church, family outings and hopefully even a vacation soon!  

Our whole family needs a week at the beach or a trip to Disney (or BOTH! lol) after this season!

We are working with some wonderful people too, to start the change that is needed in the medical community and the general public as a whole - to put Topical Steroid Withdrawal on the map and save others from the suffering 

that so many have now experienced.. 

(More on that in a future post soon!!)

oh, and there are Caladiums filling those beautiful
planters this year!
:)
*******

On our ONE YEAR 

we just want to say 

THANK YOU

first to our Lord and Savior..
JESUS CHRIST
For it is by HIS stripes, we are HEALED..

Thanks be to GOD,
for helping carry us through 

and birth so many beautiful things in our lives from this season..

we will never be the same!

and also, Thank You to the beautiful people we have met on this journey, 

many who are in TSW themselves..

who love us, encourage us, uplift us, pray for us 

and walk with us..

WE LOVE YOU and are PRAYING FOR YOU ALL!!
Thanks so much for reading our blog and keeping 

our little Isaiah in your prayers.. 

your prayers have carried us though!
 

God Bless and Keep You..

Perfect health and wholeness to flood your lives..

Psalm 121
I lift up my eyes to the hills.
    From where does my help come?
² My help comes from the Lord,
    who made heaven and earth.

³ He will not let your foot be moved;
    he who keeps you will not slumber.
⁴ Behold, he who keeps Israel
    will neither slumber nor sleep.

⁵ The Lord is your keeper;
    the Lord is your shade on your right hand.
⁶ The sun shall not strike you by day,
    nor the moon by night.

⁷ The Lord will keep you from all evil;
    he will keep your life.
⁸ The Lord will keep
    your going out and your coming in
    from this time forth and forevermore.

Next Blog Post:
My TSW Friends Amazing Update!

Mr. Itchy and Mr. Scratchy

 
My daughter now sings a song as she is helping me 
with our daily gauze wrap of Isaiah:

"Itchy Monster, you're not on me! 
Itchy Monster, you're not on me!!
Itchy Monster, you're not on meeeeeee!!!
Never, never, no, never ever! Not on meeee!!" 
:) 

Isaiah gets a big kick out of that and laughs right along with Sissy now that the itchy guy is on his way out!

******

There is a wonderful book that was just published called 
"Taming the Scratchy Monster" 
(where Sissy got the idea for her hit song!)

 

It's about a child named Billy who discovers the Monster causing his itchy pain and what it takes to cause him to retreat from his tormenting forever!

The book was written and illustrated for The International Topical Steroid Addiction Network - with 100% of the book's proceeds going to ITSAN, with the goal of helping more children like Isaiah and the others suffering across the globe.

itsan.org
forum.itsan.org
 

This quote is from Kristina Ventura who's daughter, Keira, just came through TSW and has been steroid free for 2 years:

"It is a book for parents and children going through topical steroid addiction/withdrawal and even adults/parents that may want to explain to their children/other family members what they, themselves are going through. We hope the book helps children better understand what their skin may go through and to know that their 'Scratchy Monster' will eventually leave them alone."

Click here for Kristina's blog on the Scratchy Monster book

 

The book is so well written and beautifully illustrated with the most vivid colors! It is truly a pleasure to read (especially the ending and fate of that scratchy monster!). 
Isaiah, as small as he is, looked at every single page with his sister when she read it to him.

 On a funny note, just this week we ordered Isaiah two packs of onesies to replace some of his that are Vaseline dingy and this one came with it:

Sissy said this little booger has got to be the Scratchy Monster's cousin "Itchy" and Isaiah will NOT be wearing him!



I definitely see the resemblance and agree!!
 
********

Kristina is such a beautiful person and I am so thankful to get to know her through this journey of TSW. She is so pro-active when it comes to Topical Steroid Withdrawal / Red Skin Syndrome because of the torment Keira experienced. She actually just raised some serious awareness when she took our story and pics as well as many others for a meeting with a leader in the national eczema arena. 
We are all so grateful to her for that! 
This is the only way to give this very serious side effect a voice, show those that are suffering with 'severe full body eczema' that most likely that is not the case (!!!) and demand labeling from the FDA.

When we were at Emory in Atlanta in late July, I read every single page on Kristina's blog. The Ventura's TSW story ending is a wonderful one of victory, but the beginning is heartbreaking, as was ours, and so many others who are in the withdrawal process.
(If you are new here, here is the link to the first blog page of our story:
http://isaiahquinn.blogspot.com/2013_08_01_archive.html)

This is an actual quote from Kristina's blog, as I can SO RELATE with our own journey with Isaiah when we were sinking in the unknown before finding out about TSW, as she was here:

"Out went anything that could possibly be an allergy trigger - said good-bye to our dog, changed bedding to organic chemical free bedding - cleaned house top to bottom with chemical free vinegar to remove mold, chemical residues, etc, dust mite proofed everything!, tried NAET, acupuncture, and allergy sub-lingual drops.  We even joked (though not really joking) about cutting down the neighbor's highly allergenic trees across the street.  We were desperate.  We did about everything but put our daughter in a plastic bubble, though that was tempting at times.  I started keeping food logs and dairies of where we went during the day - the weather, what we touched, what we looked at - I was becoming so paranoid of what was triggering my daughter's skin day to day and if that related in any way to a bad night or a good night - there was no pattern to the madness. In early 2011, we moved in with my parents desperate for support. We were sleep deprived, exhausted and no longer knew how to cope with our daughter's unbearable itching and long traumatic nights.  In the summer of 2011 we decided to leave Contra Costa County and the house we purchased the summer before, thinking it was the house and local pollens she was allergic to." 

I have to say, we did not leave our home, although I know exactly the thought process it took for this precious family to do that.
 
Below is another link to her blog on a page titled
"A Mother's Wish"
where she posted a poem she had written on the NEA's (National Eczema Association) FB page when their family was still drifting in the misery of the unknown before the same precious angel, Joey, that we found, found her.

(There are also pics of other children in the process of Topical Steroid Withdrawal on the same page that are mind blowing.)

Click here for "A Mother's Wish"

All that is written below in italics is from Kristina's blog and it describes her role, as well as the others that participated in this awesome project.
Please visit her blog as well as ITSAN.org and prayerfully consider donating to help those find hope! 
(and also, be able to get a wonderful children's book for a donation of $35 or more in the process!)

Keira Gives Back -- ITSAN's new book, 'Taming the Scratchy Monster' now available.

I am proud to say that my daughter, Keira is giving back to the organization that helped save her skin, ITSAN, helping create a book based on her little monster who once terrorized our family. The children's book, 'Taming the Scratchy Monster' book has been published and is now available to order through http://itsan.org/Children_s_Book.html 
A year in the making, it is a beautifully illustrated book for children and parents who are going through the topical steroid withdrawal process -- written by a dear friend of mine, fellow Red Skin warrior and brilliant author, Louise Jones.  Louise did a wonderful job of capturing the withdrawal journey in such an engaging story about a young boy and annoying monster--a story line that is perfect for kids (and adults) of all ages going through topical steroid withdrawal. I think anyone who is going through TSW can appreciate the story and nuisance of 'Scratchy Monster'.  My daughter, Keira and I came up with the concept of and character 'Scratchy Monster' during my daughter's painful withdrawal two years ago, a nuisance of a monster who once terrorized our family. 
Having both experienced topical steroid addiction and withdrawal, Louise and I teamed up to bring the 'Scratchy Monster' alive in a book that could help others who are still suffering.  I found a lovely illustrator in Spain who was willing to work with me on illustrating the scenes of Louise's storyline using Keira's Scratchy Monster character. The book came together from all the hard work and dedication from three different countries, so it is an international book just like ITSAN :)
Louise's skin is almost healed and my daughter, Keira fully healed last year from topical steroid addiction. She is now living life like a 5 -year-old should be, no longer a prisoner in her own skin. The story is based on Louise's and Keira's long and trying, and yet successful journey towards healing. In the story, the protagonist, Billy, endures many harsh conditions including a dry desert, an oozy swamp and a hot volcano in his efforts to escape the 'scratchy monster'. These conditions mirror the stages the skin may go through during the withdrawal process.
Steroid-induced eczema, also known as Red Skin Syndrome or topical steroid addiction, is a side effect of topical steroid creams -- a condition in which the body becomes dependent on topical steroid creams requiring stronger and stronger creams to obtain relief. The withdrawal process is a very painful one, but was necessary in order for my daughter to heal. http://itsan.org/eczema_questions_answered.html

ITSAN (International Topical Steroid Addiction Network) is giving the book away with a minimum donation of $35.00. 100% of the proceeds from this book goes to ITSAN.org to help children like Keira, and sufferers around the world. Louise and I wanted to give back to an organization that has changed our lives forever as well as help those who are still suffering from this painful condition.

Thank you Kelly Palace for starting an organization that is making a difference in the world; an organization that is saving so many people from this skin nightmare, illuminating what has been a very dark and lonely path -- Thank you for allowing Louise and I this opportunity. ITSAN is making a difference in so many people's lives around the world. 

And thank you Louise for your brilliant writing skills! You are a talented author and your wonderful story will help so many parents and children who are still suffering.  

Please share this post with family and friends who may want to help support this cause or would like to have a better understanding of topical steroid withdrawal. Feel free to share this post on your blogs, forums, and other websites you come across to help get the word out and help raise awareness about topical steroid addiction.

Please go to Itsan.org under the tab,'children's book' and donate today to get a copy of the book.

With much love and admiration to all of you still battling the 'Scratchy Monster', never give up or lose faith that one day you will (as my daughter likes to say) 'kick Scratchy Monster in the booty' for good as my daughter did.

 
Keira holding the very first copy
of the book hot off the presses!

  Louise Jones, Author of 'Taming the Scratchy Monster', holding her first copy of the book!

For more on Louise Jones' story of withdrawal, please go to Louise's blog: http://topicalsteroidwithdrawal.blogspot.com/

Next blog post: Healing is Happening