"This Child Has a Problem..."

"This child has a problem...and we need to fix it."

Those words, spoken by Emri's neurosurgeon, run through my head all day everyday. 

As we sat there in a room at Children's Hospital with Dr. Oakes, he rambled medical jargon that I didn't care a thing about for what felt like 30 minutes...and then he said what I had been praying NOT to hear...

"This child has a problem...and we need to fix it."

I felt like I was in a fog the rest of the time. I'm very thankful for my very attentive husband! 

Through all of this, I NEVER remember what the doctors say. 

He's amazing...and not just because he listens well :)

The emotions and thoughts I had after getting the news of Emri needing surgery I'm not too proud of. I was am very angry and hurt. I have to work through it constantly every day! I don't understand the way God works, and I don't understand healing, but I DO understand that He loves Emri more than I ever could. He IS going to heal her...it just may not be the way we want it to happen.

Every time a thought crosses my mind, I have to remind myself of the kids who have it much worse than Emri. In the words of Dr. Oakes, "this isn't the end of the world," but if you're a parent you can understand how it could feel that way. 

BUT

Emri wasn't given a death sentence. She is perfectly healthy.

We know the problem.

We know how to fix it.

And we have the best neurosurgeon around to fix it.

I could ramble on and on about how I feel and how we are dealing, but I don't want this to be a doom and gloom blog. This is just a little bump in the road of an otherwise perfect little girl.

So, to update you all on where we are with everything:

Yesterday, we met with a dermatologist to look at the hemangioma on Emri's back

...

Well, let me catch everyone up who may not know what's going on:

Emri was born with a dimple on her back, which we now know is a tethered spinal cord. Because her cord is fused with the skin on her back, there's a collection of blood vessels around the dimple called "hemangioma." 

That's puts everyone up to speed-ish..

So, yesterday, we met with the dermatologist to look at the hemangioma. We had to do this because Dr. Oakes cannot make an incision through the hemangioma because that skin doesn't heal well. So we have to put a topical antibiotic on the spot itself, and we will have to give her an oral antibiotic once we are approved to give it to her (they had to do an EKG and glucose test on her to be sure it's safe for her to take- it's a medicine for high blood pressure that seems to work on clearing hemangioma). We may also do some laser treatments to make the spots go away quickly. If these things don't work with Dr. Oakes timeline, we will have to do a plastic surgery procedure where they will insert a balloon under her skin to stretch/grow enough skin to remove the hemangioma then do a skin graft, let that completely heal, then do the surgery. 

I wanted to post a picture of this..mainly because I want all of you reading this to say a prayer that this goes away quickly.

A little scary looking, huh?

Thursday of this week, we have to take Em to the urology clinic at Children's to do a bladder test. The first thing that a tethered cord will start to affect is bladder and bowel control. So they will put a catheter in and test Em's bladder control to make sure there hasn't already been some nerve damage.

This I am not excited about.

They won't numb anything for the catheter...so she will feel everything.

I won't be in the room with her for that. That's too much.

Once we test the bladder, we will meet back with Dr. Oakes to talk the actual spinal surgery. What he will have to do is go in and separate the spinal cord from where it is attached to her back, and put it back into her spinal column. 

It all sounds very scary..

AND IT IS..

But he assured us that he has done many of these surgeries. He actually did two of the same the week before we met with him.

The timeline he has given us is 1-2 months, pending the removal of the hemangioma. 

Here is a picture of her spine from the MRI:

The arrow points to where the tethering is.

So...

We have a bit of a journey ahead of us. 

I'm scared. I'm nervous.

I'm anxious.

But I trust God to take care of my little girl.

I've been clinging to this verse since Em has been born:

"For I am the Lord your God who takes hold of your right hand and says to you, 

Do not fear

 I will help you."

Isaiah 41:13

"I will take your hand...and I will help you"

What a sweet promise from our Lord. 

Keep praying for our sweet girl. For this Thursday's test, pray that her bladder is functioning as it should. That there be no nerve damage. Pray that the hemangioma goes away quickly without the laser procedure or plastic surgery option. 

Also, we are having some difficulties getting Em on an insurance because she has a "preexisting condition." The fact that we are even having a problem with this is A B S O L U T E L Y ridiculous....but I'll save my opinions on that. Just pray that we can get this worked out before she has to have surgery.

I love you all! All of the texts, calls, tweets, posts, messages, etc. mean so much to us. We could never thank you all enough for all of the encouragement! 

xoxo