-Emmie had her MRI on August 16th. She did amazingly well and Mark and I pulled through with a few tears but we made it. It helped that she fought the sedation instead of going in to a deep sleep. She’s a fighter.
-The MRI showed NO neurofibromas (tumors) on her brain or optic area (a concern with NF).
-What we thought was a plexiform neurofibroma, is a plexiform. It extends down to her spinal cord but is not yet pressing on anything which would cause problems.
-Because of the location and the fact that the plexiform is increasing in size, our pediatrician was anxious to get the MRI scans looked at by a pediatric neurosurgeon. Our geneticists were already working on this.
-We heard back from the neurosurgeon today and he did not feel she needed surgery at this time! We will be following up with a neurologist very soon.
-Just because she does not have to have surgery at this time does not mean she will not have to have surgery in the future. Especially if it continues to grow.
We are praying and praising God that at three months she doesn’t have to face surgery right now. The older and bigger she gets the better it will be for her surgery. So, please pray that she continues to grow strong and healthy and that the plexiform will slow down its growth.
What we don’t know:
-When she will have to have surgery or what will constitute the need.
-What NF holds for Emmie on a day to day basis.
-If her tears are normal baby cries or cries of pain (seriously makes it harder to be mommy when I just can’t tell some times).
-How this will affect her or our family in the immediate and far off future.
We are trusting God and leaning on Him as He holds our hands (and sometimes carries us) through this journey. He has already blessed us with amazing people in our path, my best friend from high school who just “happens” to be a doctor at the hospital that we are going to and a pediatrician who we consider a friend and who takes lunch breaks and after hours to work on advocating for us and getting answers. And who we know is praying for Miss Emmie as we walk this road.
A friend recently commented that she didn’t know how we were doing this. Honestly, some days I just get really angry and others it’s just a normal day. But on the vulnerable moments I bow my head and pray. And I know that I couldn’t get through any of this without God’s love wrapping around us. I’ve said it before and I’ll probably say it again, we are so blessed that God chose us to be Emmie’s parents and to be Zoe, Ace, Liam, Josiah, Ceili Rain, Bryant, and Malachi’s parents too. What a privilege we have to love them the way Christ has loved us!
And if you are wondering, this is still a blog about our whole family. I definitely have plans to post more happenings because in the midst of all this uncertainty, we are still living and doing. Hopefully, I can get more pictures up soon but again, we are living and doing and our life is so full right now. I wouldn’t have it any other way.
