Pyper had a much “quieter” day today than she did yesterday. Not as much activity going on, so not as much to report on.
The picture below shows Pyper as they got her set up for her swallow study. She is still aspirating. Not what we wanted to hear. The next plan of action will be to put her under general anesthesia so the ENT and Pulmonologist can go in and look around.
She had an Echocardiogram done this morning, but they have not received any news back from this yet.
Around 8:45pm tonight she was getting hooked up for her sleep study. They will monitor her for 6 hours tonight.
Top priority is focusing on her breathing and oxygen issues.
I find myself wanting answers to all of Pyper’s “issues”, forgetting that some are more important than others.
While this is all taking place in Chapel Hill, NC, 4-1/2 hours away, here is what is happening at home:
Gavin and I are driving to school this morning and he says to me “Nana, is Pyper disabled?”. My heart stopped for just a brief moment as I “chewed” on his question. My response: “We won’t know that until she is older, but she is what we would call a special needs baby”. He asked me if she would walk like other babies and do other things like they would. I told him that Pyper has a lot of health issues right now and the doctors are working on figuring out what is causing them. I explained that Pyper will do all the things that other babies will do, it will just take her longer to do them. He knows that we are praying for her healing. These are such beautiful teaching opportunities and I took full advantage of it 🙂 The door was wide open for a conversation about a boy at school (in his class) that has some issues. I explained to him that it was not this boys choosing to have these issues, but that he, just like everyone else, longs to fit in and have friends. I told him that Pyper is no different. She didn’t choose to have health issues and that someday she will want to fit in and have friends just like he does. I have seen Gavin’s heart soften toward this boy over the past couple of months. I believe that this journey with Pyper is giving Gavin a heart that will be filled with empathy and compassion for those that may be a little different. I envision him and Chloe being advocates and champions for the “underdog”.
It saddens my heart that this little boy was carrying the burden of a question such as this. You see, before Gavin voiced this question, I know that he had held it inside and worried about it for quite awhile. He is so perceptive to everything that goes on around him. He takes it all in and worries about things more than most children his age. He genuinely cares and shows concern for people. He loves his little sister and is already her protector. She doesn’t know it yet, but she is one blessed little girl to have a brother and sister that will walk the journey ahead right along side of her.
As I drove home today after dropping Gavin off at school, I realized that I have never associated the word disabled with Pyper. It just has never crossed my mind. And I thought why hadn’t it? I haven’t entertained that word because I believe in a God that can heal Pyper, either miraculously, and/or by using the doctors. I do not have to believe the lies of Satan that would suggest otherwise. I have chosen to keep my eyes on the One who’s promises are YES and AMEN!
Today I am THANKFUL for a little boy who loves his little sister.
Today I am THANKFUL that God gives me teachable moments in the lives of my grandchildren.