I’ve been trying to get this squeaked out for the past week.  I wasn’t sure how to start or whether I even wanted to.  Putting it in writing on the blog kind of makes it official.  There’s still a lot up in the air but one thing is certain…Super Ems is fighting another battle.

Emmie did wonderful with anesthesia and getting through the whole procedure as usual.  Our girl rocks through all of it as usual and Tobin made sure to sympathy cry through getting the iv out.

We talked with her neurologist, Dr. W on Friday.  And we received the report yesterday.

Let’s just hash out the details and then go from there:

Emmie definitely has stenosis of the left cerebral artery.  Stenosis is a narrowing of the blood vessels. The cerebral artery vessel is significantly narrow.  Dr. W told us that she is getting blood flow to the left hemisphere but it is very slow because it has to come from the right vessel.  There are no signs of tiny vessels forming which would lend to a diagnosis of what is called moyamoya (pretty interesting to read about and is something that can happen in NF).  He told us that it could be we are at the very beginning of moyamoya but it’s really just too early to tell.

We asked Dr. W if this was an NF thing and he said it was.  It’s not common but it is definitely something that all NF doctors are familiar with and so are other doctors.

Big praises though:

1. There were no signs tha
   t she has had a stroke and no signs that a stroke is coming in the immediate future!
2. This isn’t like her kyphosis where everyone tried to scramble to figure out how to work it.  Stenosis is something that neurosurgeons are familiar with.
3. There are no signs of a tumor causing the stenosis!

Prayers and next steps:

• Dr. W is talking to Emmie’s current neurosurgeon to see if he is comfortable with working with her.  If not, there is another neurosurgeon at CHOA is very familiar with stenosis and she could be referred to him.  We know of this doctor and have already been talking with another NF mom whose daughter is seen by him (I LOVE social media for this very reason).
  Please pray for wisdom for the doctors. There is a procedure they can do but it has to be done at the right time. Too soon and the brain won’t recognize the need for it.  Too late and we’ll be dealing with after-effects of a stroke etc.
• We’re in the process of getting in touch with another neurosurgeon just to have her scans reviewed.  We were told about him, again from a mom who has already walked this path. He is familiar with moyamoya and other vascular issues as well as with NF…basically he is a leading doctor in this kind of stuff.
• Dr. W was adamant that Emmie not get dehydrated.  She’s at a greater risk of stroke and any change in blood pressure puts her closer to having one.  Stomach bugs mean a trip to the ER to get fluids and monitor blood pressure So, if you hear us pushing water on her, it’s because of that!  I have to say this is putting my stomach in knots. Kids get stomach bugs all the time.  My kids are no exception.  Mark and I are pretty laid back with taking our kids to the doctor much less to the ER.  We jokingly say we are the “I’ve seen bluer” parents. Please pray for us that we can be diligent and pray that she can skip the stomach bug for forever.

There.  That’s the raw facts in layman terms.  If you’re really curious what the scans look like, let me know and I’ll send a couple of screenshots I took.  It’s very evident that something doesn’t look right.

I go from just plugging along with life to holding my breath.  I watch our lively four year old bossing her siblings around, laughing at silly tickles, running and dancing.  It’s hard for me to believe that her beautiful little brain is having to work so hard to keep plugging away. I’m in wonder and complete awe that God has chosen to protect her from any harsh effects so far as her body continually battles against itself.  We are trusting God right now as always for HIs loving protection of our superhero. We know that He knew Emmie long before we did. He created her and knows each breath she takes. Each hair on her head. And yes, each blood vessel and vein in her body. Those promises lead me to trust Him even more and to know that no matter what, He is still our God.  Our Abba, Father.

 “For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”

Isaiah 41:13