June 24, 2012

Good Evening!

I hope you all enjoyed a wonderful weekend.  The weather was amazing and the best part was that we were able to enjoy it because we were discharged on Friday evening.  We were at children's for 24 days and I realized I forgot it was summer because we were inside so much.  It was nice to see the sun and feel the heat as we walked the neighborhood today. We thought we were in heaven just being outside for 30 minutes as a family. 

Hopefully we will be home for good now. We spent last week trying to control the infection and work out his feedings.  We were moved to the oncology floor at children's where we received top notch care.  His oncologist, Dr. Jakacki, treats each child with passion and sensitivity.  She leaves no stone unturned and makes sure her patients recieve the best care available.  We are so blessed to have her managing Nathan's health.   We still do not know the source of the infection, but the antibiotics are working and he is more like himself every day.  The feeding are still a challenge. He seems to be in less pain as time passes and more comfortable with his new way of eating.  Unfortunately, he is still not sleeping well due to the acid reflux, feedings, and just being a normal 8 month old who wakes up and wants mommy and daddy.  Mike and I just hope to sleep more hours than we are awake at night....maybe tonight is the night.  As we went to bed last night I asked God for a selfish request, please let Nathan sleep well so mom and dad can get a few hours in a row. Mike said we are probably tapped on small requests...he has been pretty good to us so far. 

When we came home, we were showered with beautiful cards that were waiting for us in the mail. We love reading them throughout the day. Nathan could not stop smiling and laughing when we got home on Friday.  He was so happy to see his toys and books.  He sat in his high chair and threw things off the side for well over an hour...we knew he was feeling better!  I used to say we were creating a bad habit.  Now I just keep picking them up and giving him more toys to throw off the side.  Oh how my perspective has changed.

This past week was extremely humbling for Mike and I.  When you spend 5 days on a floor where your child with a brain tumor is one of the healthiest kids there, you can not help to stop and be thankful for what we have been given.  Nathan has been given a chance and many of those kids will never be given a chance.  It reminded me that Nathan will have to fight to be healthy every day, but his fight could have been  a heck of a lot harder. I met so many amazing parents over the past week.  Whether their child had leukemia, was going through chemo, or waiting for a transplant, every one of them was positive and friendly.  They are all living a nightmare, but yet they found time to offer me words of encouragement and support.  One of our dear friends, Bridget, is a nurse on the floor.  We have always said to her that we hope to never have to be on her floor.  Little did I know that spending those 5 days on her floor was actually a gift.   It reminded us that life is precious  and you can not waist a single minute.  I hope we do not have to go back there any time soon, but I will always have a special place in my heart for those families.

Nathan and I would take a walk in the mornings when he was feeling well enough to go in the stroller. On Friday before we left, we spent our morning time at the chapel.  It is a beautiful space that allowed me to sit and simply say, thank you.  I will never know why this has happened to us, but I do know that there is someone very powerful making sure we get through it.  Your words of encouragement and prayers make us stronger in our faith and help us to get through each day.  For that, we say Thank You! 

Love, 

Beth and Mike