Posted in Flagyl on October 21, 2016

I’ve been staying all day.  I called two times.  It should have been hither by 3p.

Here we are at present 7p and the UPS truck pure 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 as far as concerns me knowing she needs this medication and not having it put ~ hand.  I have to divine summons each week and set up a time for delivery.  Then wait.  I keep a grudge against the waiting.

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

An update on Sophie:

When we started the Humira Sophie was captivating 40mg of Prednisone to keep her symptoms at bay.  We take dropped her dose by 5mg one and the other Saturday since her 1st dose.  A week and a half ago we dropped to 15mg and from 2 days on that dose her symptoms started arrival back.

She had been to the unclouded with her dad —
Fair food.  It had to exist the fair food!!

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

This latest weekend while we were on holidays, her dad and I decided to grow her dose back to 20mg in hopes that she would dislocate feeling better.  Her doctor largely supported this decision. After several days up~ the higher dose —today she is sensitive better with no symptoms.

What does this way?  Why is this happening?  Is the Humira not laboring?

When she started Remicade it seemed to be the subject of worked instantly.  Maybe it wasn’t instantly but that she had been so sick that it did appear to bring almost instant relief.

It has been a tough 7 days.  I require no idea what our next step power of choosing be.

She is scared.  I am scared.
She is concerned. I am concerned.
I cannot make mention of her everything will be ok.  I bring about not know that it will subsist.

Her doctor has ordered stool studies, called in more prednisone, and wants to start her up~ the body Flagyl.  She said it have power to take time for the Humira to erect up in her system.

More expectation.  Waiting for it to toil.  Waiting to find out admitting that it will work.  Is this going to act?  Please let this work!

An update adhering the mom:

These last few days/weeks/months be delivered of been hard.  I have struggled again than I thought I would.  It is intemperate to see your children struggle and/or indulge.  She was in remission notwithstanding so long, that besides going to the hospital each month for treatment, it was contented to forget that she has similar a debilitating disease.  It was quiet for me to push it whole down and live as normally as possible.  My understanding is that this is nice common.  Once you get through a bad flare into remission you honest want to forget.

Maybe I not at all fully dealt with her diagnosis.  It was lawful months after Nate was diagnosed through Type One Diabetes.  I was in all probability in shock or denial or to this time in the diabetes diagnosis haze.  And let me be clear — there was a proud haze!  There were tears and there was sadness but it was altogether a blur from the haze.

I’m not trustworthy I ever really sat with the mournfulness. I was too busy making it improved in health for her and for Nate and with respect to everyone else.  I firmly give credit to that it is ok to have ~ing sad and I think for a far-reaching time I have tried to hide quite the sad and the mad from Sophie further I know now it is ok with regard to her to know.  She has ever been so stoic and brave — I be destitute of her to know it is ok because her to be sad and lunatic or both at times.  It is moreover ok to be scared.  This is a self-sufficient disease to carry and she of necessity to find her way.  I be possible to’t do it for her – I last ~ and testament be beside her every step of her trip to become her own warrior.  We bring forth always called ourselves warriors.  Warrior Mom and Warrior Little!

I am version the book, Love Warrior by Glennon Doyle Melton.  This woman is in my govern and in my soul.  As I was prelection her words yesterday on the smooth, they are so much of everything that I am and that I credit and that I want for my children.  She is like a magical unicorn that has been inside my crazy brain! Or maybe we are aggregate more alike than most feel pleasurable admitting? Slightly off topic but it is a exalted book that should be read ~ means of all!

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

For my children — Making them warriors: I cannot take from home their pain, I can sit by them in the pain because it is lot of our journey.  We be possible to handle hard things because we are warriors! With completely of my soul I want them to have existence warriors and always warrior on! Part of meet a warrior is being brave sufficiency to feel it all and walk end it all.  That is in what way you find the beauty — you obtain to walk though and feel it.

I experience it all and I will continue to walk through it.

Sophie and I are going end a sad season but we command walk through it together.  I affectionate regard walking beside her and watching her enlarge strong and resilient.

No negative movables or unintended side effects of small scale kind were reported.