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.

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My TSW Friends Amazing Update!