Stop topical steroid abuse!

Friday, January 25, 2013

I love you Mommy, But........

his cheeks are real red and dry

his neck and feet are the worst area right now

dear lord i need make up!

I love you mommy, But....

This is one of Kline's favorite things to say. He says it all day long.

I love you mommy, but.........

And I keep expecting something bad to follow...

I love you mommy, but...

You are the worst mom ever.

I love you mommy, but

Your breath smells real bad!

I love you mommy, but

You cuss way to much!

I love you mommy, but

Your butt looks terrible in those pants!

I love you mommy, but

You are doing everything wrong and I will be in therapy for the rest of my life, thanks!

But the but is never bad. I think this kid just doesn't get what the but is meant for! Judgement, not good enough, you could be doing better..... 

His buts are always.....

I need a pop!

I want more tv!

I need a new toy!

His but's are never as judgmental against me as I think they will be! Thank god!

So, maybe just maybe, in his 3 year old eyes I am doing ok! I am doing the best I can, and he knows it! And maybe, my breath just doesn't smell as bad as I think it does.  And my ass isn't as huge from his view.  And maybe just maybe all my cussing, tantrums and melt downs aren't as bad in his eyes...or he just understands that mom's a mess right now, we all are and that's ok!

One day the itchy bastard will be gone and one day Kline probably will say, mom I love you but....

You freaking suck and you have ruined my life.

But not today! Today he loves me and we are all doing our best!

I love you Kline, but I hate that itchy bastard and I hope very soon he leaves you alone for good!

I love you Kline, but I hate you have not had a normal life in the last year. You have not gotten to go to preschool, dance class, ski lessons, swim lessons, the park..etc.etc etc.   

I love you Kline, but I hate that I don't stay as calm when you flare as I should.

I love you Kline,but I hate that we cuss so much.

I love you Kline, but I wish I could be the best mommy in the world. 

I love you Kline, but you are the bravest little boy I have ever met.

I love you Kline, but one day you will change the world because of your suffering!

I love you Kline, but you are absolutely perfect!

I love you Kline, no if , and, or but!

So parents, please be kind to yourself....we are all just doing the best we can! Sometimes our best looks like absolute shit, but it is still our best.

I love you world, but..........

Xoxo Loren

Kline's update
~We are 11 months off topical steroids. He is getting more breaks....our days are not just bath anymore.  He was in the bath 15-18 hours a, he gets in 2 or 3 times a day when he can not tolerate the flares and only stays in 2-3 hours each time.  So, that is huge.  Also, he is sleeping better...shhhhhhh, don't want to jinx it!!  The majority of his skin looks amazing, but his trouble spots, where we used the most roids, still are giving him a hell of a time.  His feet are still bad and we never used there.  I have heard the kiddos all heal before a year off...I have a feeling Kline might ruin that statistic! I hope that this gives some of you out there hope....that although his in not healed....he's on his way, slowly but surely!  Hang in there!!!! You can do it too!!!~

Sunday, January 13, 2013

An update on little Abigel

If you have been falling kline's blog you will remember back in oct.  I was asking for donations for Abigel to go see Dr. Rapaport in LA....She lives in canada.  Well, her skin was too bad for her to make the trip.  She ended up having a terrible stay in the Canadian hospital and her wonderful strong mother was threatened by the Doctor's and staff for refusing steroids.    She was even threatened having CPS called... so crazy and scary!!!  Dr. Rapaport spent a lot of time on the phone with the doctors but they would not listen. Finally, after being held "hostage" at the hospital they sent them home with multiple scripts of topical steroids, which her brave mother NEVER USED!!!!!!  Now, almost 3 months later, Abigel looks like a new kid!!! (See pix about, the bottom right pix is today!!!!!!!)  All she had at the hospital were antibiotics, proving that you DO NOT NEED STEROIDS TO HEAL YOUR OUT OF CONTROL SKIN!!!!!!  TIME TIME TIME IS WHAT YOU NEED!!! Abigel is still very itchy like Kline and has a hard time sleeping but she will get there, thanks to her mother!! Abigel's mother is a dear dear friend of mine, that means more to me than she will ever know!! Abigel is such a brave little warrior chick and one day I hope our healed warrior babies can play together!!!  Congrats Abigel and mama!! We love you!

Loren and Kline

Saturday, January 5, 2013

New Years Eve was a knee to the balls!

Week 45 of topical steroids: Kline had very rough week and a terrible new years eve....kline started to ooze again around his neck....

the bottom of his ears are very bad, hard to see here but there is just a huge scab on the bottom of each year. a big place we used roids

and the damn feet.....we never used steroids here but since klines feet got infected back in oct.  they are such a bad itchy.

who gets scabs on the bottom of the feet?? Kline! that's who!

So, even though this week has been hell....we spent many nights in the bath till midnight and back in at 4 am, he had an amzing day today!

I went for my first therapy session, which we will work on my jekyll and hyde emotions, and kline got to.....go to the kids meuseum with his best friend and grammy, go to lunch and the train museum and even go to the dairy free sorbet shop!!!!! yeah, he was out of the tub till just now at, drum roll please...............6PM!!!!!!  18 freaking hours out of the tub!!!!!!!

I hope that only more and more days will be like this and I hope my therapy can get me out of the angry sad fog I can not get my self out of.  He is healing, slowly for sure, but healing! I can not wait for the day he is all better...he may still have eczema, but the day the itchy bastard leaves for good.....I will crap my pants , do a dance, and run through the streets naked!!!!  And ofcourse I'll vlogg it all for you! lol

Happy itchy bastard free 2013!