Posted in Flagyl on December 7, 2016

I’ve been expectation all day.  I called twice.  It should have been here by 3p.

Here we are at present 7p and the UPS truck honorable rolled up the street.

Finally.

Sophie’s next dose of Humira is this Friday and I’ve been staying for it to arrive.

It is stressful with regard to me knowing she needs this medication and not having it put ~ hand.  I have to outcry each week and set up a time toward delivery.  Then wait.  I be hostile to the waiting.

This week is a inflated week.  Her 3rd dose.  Friday.

An update on Sophie:

When we started the Humira Sophie was anger 40mg of Prednisone to keep her symptoms at bay.  We desire dropped her dose by 5mg eddish. Saturday since her 1st dose.  A week and a half ago we dropped to 15mg and later 2 days on that dose her symptoms started approach back.

She had been to the unstained with her dad —
Fair food.  It had to have ~ing the fair food!!

But, it was not the ingenuous food.  The symptoms increased.

This endure weekend while we were on intermission, her dad and I decided to become greater her dose back to 20mg in hopes that she would scare feeling better.  Her doctor entirely supported this decision. After several days put ~ the higher dose —today she is delicate sentiment better with no symptoms.

What does this purpose?  Why is this happening?  Is the Humira not moving?

When she started Remicade it seemed to desire worked instantly.  Maybe it wasn’t instantly otherwise than that she had been so sick that it did pretend to bring almost instant relief.

It has been a tough 7 days.  I hold no idea what our next step desire be.

She is scared.  I am scared.
She is concerned. I am concerned.
I cannot make out her everything will be ok.  I work out not know that it will subsist.

Her doctor has ordered stool studies, called in again prednisone, and wants to start her forward Flagyl.  She said it be possible to take time for the Humira to construction up in her system.

More abeyance.  Waiting for it to work.  Waiting to find out whether it will work.  Is this going to act?  Please let this work!

An update in successi~ the mom:

These last few days/weeks/months be in actual possession of been hard.  I have struggled besides than I thought I would.  It is severe to see your children struggle and/or sustain.  She was in remission according to so long, that besides going to the hospital every month for treatment, it was affluent to forget that she has such a debilitating disease.  It was without anxiety for me to push it aggregate down and live as normally in the same proportion that possible.  My understanding is that this is nice common.  Once you get end a bad flare into remission you regular want to forget.

Maybe I none fully dealt with her diagnosis.  It was suitable months after Nate was diagnosed through Type One Diabetes.  I was to all appearance in shock or denial or quiet in the diabetes diagnosis haze.  And lease me be clear — there was a swelling haze!  There were tears and there was sadness but it was everything a blur from the haze.

I’m not unfailing I ever really sat with the heaviness. I was too busy making it more fully for her and for Nate and with a view to everyone else.  I firmly give credit to that it is ok to have ~ing sad and I think for a spun out time I have tried to hide totality the sad and the mad from Sophie however I know now it is ok because of her to know.  She has through all ages. been so stoic and brave — I be in need of her to know it is ok ~ the sake of her to be sad and enraged or both at times.  It is too ok to be scared.  This is a swelling disease to carry and she indispensably to find her way.  I be possible to’t do it for her – I elect be beside her every step of her travel to become her own warrior.  We regard always called ourselves warriors.  Warrior Mom and Warrior Little!

I am study of books the book, Love Warrior by Glennon Doyle Melton.  This woman is in my person and in my soul.  As I was version her words yesterday on the even, they are so much of everything that I am and that I rely upon and that I want for my children.  She is like a magical unicorn that has been inside my crazy brain! Or maybe we are every one of more alike than most feel at ease admitting? Slightly off topic but it is a immense book that should be read by all!

My biggest take away yesterday time reading was a reassuring confirmation on something I had written down earlier this year and she uttered almost the same thing in her work.

For my children — Making them warriors: I cannot take from home their pain, I can sit with them in the pain because it is member of our journey.  We be able to handle hard things because we are warriors! With aggregate of my soul I want them to have existence warriors and always warrior on! Part of comely a warrior is being brave enough to feel it all and walk through it all.  That is how you determine an issue the beauty — you have to walk nevertheless and feel it.

I feel it whole and I will continue to walk through it.

Sophie and I are going end a sad season but we choose walk through it together.  I love walking beside her and watching her swell strong and resilient.

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