Friday, October 7, 2016

A New Hope - Humira

On Friday, September 23rd, we began a new chapter in Sophie's Crohn's Disease story.  After we got the results back that told us she had built up antibodies to the Remicade we immediatly began the insurance battle for Humira.  It was a long and heated battle but in the end we came out victorious and the Humira was delivered while Ian and I were still in Hawaii.  As soon as it arrived, I made plans with Sophie's doctor to come into the hospital to learn how to administer the meds.  We had heard and read absolute horror stories about Humira.  About the pain that it causes after the injection.  Sophie had heard them too.  We both had a lot of apprehension and fear about this new chapter.  Sophie's doctor recommended that we see the GI Peds Psychiatrist before coming in for the 1st injections.  

I am so glad we were able to do that!  She worked through both of our fears, gave Sophie some great coping skills, and a few tips for getting through the injection without it being quite so terrible.  It was good for us both to be able to have someone to talk to about it and calm our fears. 

On the 23rd we made our way to the hospital, all a bit nervous for what was about to come but we had a plan, and there was a calmness --- there was also a promise of Chick Fil A and the rest of the day off from school!  SCORE! 

Here is what I posted on Facebook after we were done.  I meant every word.  She is so strong, so stoic, and so very brave:

We did it. She is so brave. I do not take bravery lightly --- she was so strong and brave and fierce. 

She didn't want any distractions (ice, candy, numbing cream) --- she wanted to just do it. 
Y'all I love her brave self so much!!

The nurse gave the 1st shot and I did the 2nd one. She tried so hard not to cry but I told her it was totally fine if she wanted to do so ---- so we cried together.  My mommy heart broke to pieces watching her be so brave and endure such pain while trying to keep her brave face on. 

She said it was worse than she thought it was going to be --- pain level 10 out of 10. She did so great! 

We will begin to taper the prednisone and should know if the Humira is working by mid-October. 

This is being posted on Friday, October 7th, it has been 2 weeks since her 1st injections.  Today she gets her 2nd dose but we do it at home.  On our own.  

Stay tuned for my next post.  Things have been hard.  Harder than expected.  Mostly for me.  It is so difficult watching Sophie deal with so much.  I fear I have fallen back years.  She is doing so much better than I am.  I have been dreading this day, yet here it is . . . 


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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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