Amazing Grace

This morning I woke up before everyone else in the house. I glanced at the video monitor and Cole was starting to stir and I could hear Kaitlyn's feeding pump making its normal turning sound. Then the first thing that came to my mind was the song "Amazing Grace". I haven't thought about that song in awhile but it seems so fitting for what we have been going through and I'm sure that's why I thought of it. Here is a version that is simply amazing!

Click here for the Amazing Grace Video by 7 year old Rhema

Even Cole can't resist touching Kaitlyn's hair!

Since the last post, a lot has happened and at the same time not a lot has happened. First of all, Kaitlyn is doing really well. We have started using Atropine drops under her tongue to decrease the amount of saliva that she has and it seems to be helping some. We haven't seen any negative side effects yet, although it doesn't taste good. Trust me, I tried it.

Daddy/Daughter Time

She has had few episodes and has been pretty content and even gave some of the biggest grins we have seen in awhile! We got to spend time with Granddad and Grandot (my dad and step-mom) over the weekend as well as Memere, Pepere and Makayla (Chip's parents and our niece). We even got to have take out dinner at home with our new friends, the Cook family. What a treat!

Smiling with Granddad

At the end of last week, we hit a slight snag in our plans for having samples taken from Kaitlyn's body after she passes away. We were informed that the pathologist wouldn't be doing a biopsy (injecting a needle to collect cells)  but rather a full autopsy. We definitely were not prepared to hear this and it threw a wrench into what we thought was our plans. Do we really want Kaitlyn's body to go through that? We called Dr. Wasserstein (NPD expert at Mount Sinai Medical Center) who has been coordinating the cell collection with the pathologist locally and spoke with her about what would happen exactly and what we are comfortable with and not comfortable with. We have always felt very strongly that we want to help find a cure for NPA or at the very least, help experts get more information about the disease. We know that we were given Kaitlyn for a reason and we know that we are her parents for a reason.

Cole gives "kisses" with his forehead

We expressed our concerns and Dr. Wasserstein said that she would talk with the pathologist to make sure they do only what is necessary to get the samples. We obviously won't be looking for a cause of death as with typical autopsies. Also, we want to make sure any incisions are as small as possible, again, only what is necessary. The reason for the procedure is much different than what they are used to so communication in what we are okay with and not okay with is really important to us. We feel good about our decision to continue with our plans to gather samples from different systems of the body to further the research on NPA. A phrase that popped into my mind throughout the end of last week when we were trying to figure things out with the samples was, "If it's meant to be, it's up to me". It just kept running through my mind over and over. Although I would probably modify that statement by including God and not just "me". God had led us through all of this and guided our decisions. We will continue to look to Him for guidance.  

Crazy hair!

I still think back to August when Kaitlyn first started having apneic/seizure episodes and can't believe that she is still here with us. I truly am amazed at her strength and ability to persevere with this disease. I felt that we would be lucky to get to Thanksgiving and now she is still here and it's almost Christmas! We are so thankful and blessed and again, AMAZED.