Emmie had her ninth MRI at the end of May.  Tobin got to hang with us this time.  It was a long and very hard day.   We, of course, don’t know the details but whoever went before Emmie was a pretty difficult case.  She was scheduled to go back at 9.  She didn’t get back until noon.  It would have been so easy for us to get angry but what good would that have done any of us except to stress out the staff even more.  So, we made the best of it.  Emmie watched three movies and was content to just chill even though she had gone so long without food.  We always pack a hospital bag and we found things to do in the bag and the nurses brought things for her. We all got some good old cuddles.   When she went in the tube, we got a blanket and Tobin had a good time with her balloon. This kid was SOOOOO out of it after her MRI.  It was hilarious.  Next time, we’ll have to get a video or at least write down all the silly things she says.  She devoured everything we gave her to eat the rest of the day.

So, the report was like this:

1. All plexiforms are STABLE!!!!!
2. No signs of optic gliomas (tumors in the nerve behind the eye)
3. The tumor in her neck is going down near her right lung and it appears to be in front of it and not pressing on it.
4. There appears to be some narrowing of blood vessels in her left cerebral artery (stenosis).  It’s not on any major artery and she is symptom free.  Recommendation was made to have an MRA which is like an MRI but looks at the blood vessels.  When we met with her neurologist in June, we asked that she has it done sooner rather than later to see what’s going on.  I’m purposely not posting more information because we just don’t have any solid answers as to what is going on yet.  We have an idea but nothing firm. Emmie will have the MRA August 29th.  It’s not  a long test but she’ll have to be put under general anesthesia again.  Please pray for her and us during this time.  We know God has big plans for our hero.  We see all He has done through her every time we glance at her.  While this information is very scary, we are trusting in Christ through it all.

Now back to all things May…
The day after her MRI, we headed to our favorite people…the orthotists!  It was a loooong appointment as she had to be fitted for her brace.  But, again, we kept busy.  Netflix and wifi—thank you!

She did great.  But these pictures only tell half the story.  Two days of poking and prodding and our girl was so sad by the end of this second day. After we finished with the fitting, she jumped into her daddy’s arms and had a good ol’ cry.  Our orthotist thought something was wrong.  No.  She’s just tired.  She has to wear a brace and has had to wear one most of her life.  This.  Is.  Not.  Easy.  Our brave girl trusts that what we are doing is for her good.  By the end of the first week, she was already up to wearing her brace 16 hours a day.