Thursday, April 15, 2010


What Abigail and Mama did a lot today...thankful for that thumby. :)

We had another "first" today with our little girl concerning NF (I think). As I've mentioned around 8 million times NF can encompass a thousand different things and manifest infinite different ways. One of the things reported by lots of people with NF is pain. Sometimes the pain is due to a tumor, sometimes there seems to be no explainable cause.
This morning Abigail woke up about an hour and a half earlier than normal, and she was crying. She always wakes up happy and babbling. So I thought I would give her a few minutes to see if she either went back to sleep, or began talking to herself. Neither happened. Her crying got worse, and more persistent. So I went in. She immediately signed "hurt" and grabbed her back. I asked her if her back hurt and she signed hurt again. I picked her up thinking she may have needed a diaper change, and she immediately began crying harder and arching her back. Again not a typical Abigail behavior. She was signing hurt over and over and grabbing her legs and back. I have to give her a breathing treatment first thing so I just rocked her while she took the treatment and prayed for her.
We went downstairs and she continued to tell me her legs hurt although she was no longer crying. She spend the morning snuggling a lot, playing a little and falling more than normal. She does have days where she falls more so it may have been related to the pain, or it may have been coincidence.
I did call her neurologist even though I was fairly confident he would tell me that coming in today wouldn't be any different than coming in Tuesday. I was right.
There are two possibilities in my head for the pain. First of all lots of people with NF report having pain that the doctors can't find a cause for. Things like migraines, and just pain in general are not uncommon with NF. However one of the things on our list to bring up is a suspicious spot on Abigail's back. It has been there for a while, and because there isn't a lot they do for NF tumors unless they are causing issues, it wasn't worth making a big fuss over. We just assumed we would go Tuesday and possibly do another MRI from there.
As far as how she is doing, and how we are doing; well she woke up from nap her happy bubbly self. She did tell us during dinner her leg hurt, but she wasn't fussing about it at all. We are okay. It was a little harder for me since I was here for it. I don't like my baby to be in pain, it's hard when she can't tell me what's going on, and it has increased my thoughts on the suspicious spot on her back. I spent the morning snuggling, singing over, and praying over my baby. I just keep asking God, even now, to be merciful with her. She is too little to even understand pain, and this is one that I can't just put orajel on, or give her ibuprofen for.
So you all can be praying for the same thing. And you can be praying that if she has more pain we have the patience to endure, whether it be in the middle of the night, or holding her all day.

Praying for mercy for our baby bug,


  1. Praying for you guys! That's so frustrating.


  2. Poor little one. Praying for you guys.