Friday, March 21, 2014

Feeling helpless...

I'll be honest, the past few days have been excruciating! My baby girl is in the hospital and really struggling significantly. I'm exhausted physically and emotionally. My heart hurts. I feel helpless because I can't make everything better. I HATE that feeling.

So with lots of time on my hands while in the hospital with my sweet baby girl I have done a lot of thinking. So many times I have heard and even said something like: "You don't realize the blessing of a healthy child till you have one that isn't".

Seriously, what was I thinking? Yes, it is a blessing to have healthy children, but that doesn't mean that those with challenges aren't a blessing. My sweet baby girl has been through so very much, and yet she brings so much joy to those around her. She teaches me things all the time. She very rarely complains about all of the stuff that she has to endure. So often we complain about little things (for me it is drivers who annoy me), and she pushes on through the pain complaining so little about it that most people would never know she has anything wrong with her.

So while my heart aches, and I wish I could take away her pain I'm so grateful for what an amazing gift I have been given in my precious girl!

Thursday, March 13, 2014

Yet another surgery....

We had hoped after the last update that our sweet girl would have a break from surgeries and hospitals. Unfortunately, that is not the case. I'm posting an update here so friends and family can know what is going on and can pray.

Over the last few days we noticed that our youngest wasn't acting quite right. She was having a lot of headaches and was tired and had a few other things that just weren't quite right. Tuesday morning I was snuggling with her and I noticed that she had another fluid filled lump on the back of her neck under her incision line. This means that she has yet another spinal fluid leak. I immediately called the surgeon who worked us in the same day. He scheduled surgery for the very next day and sent her for an MRI. We were getting everything set up for her to have surgery again when his nurse called us to say that after looking at her MRI the surgeon had determined that the surgery he was going to do the next morning was too dangerous. They then scheduled an appointment for today and surgery for Monday.

Today we went and met with the surgeon. It is really hard to condense all that he said. After a lot of discussion and looking through current and past MRI's the surgeon has come to the conclusion that he has to remove her cerebellar tonsils (the bottom of her cerebellum). He said that this section of the brain controls nausea and balance, and that after a few days there are other parts of her brain that will take over these functions so she can return to normal. They will also have to place another drain, but he isn't sure where he is going to place it at this point. She will be in the hospital for 10 - 14 days this time depending on how she does.

Needless to say, thoughts and prayers are greatly appreciated! There is obviously far more to what is going on than what I was able to include in this post, but it should give a general idea of what is going on in our little world.