Here's to 2013

So, as you know we didn't celebrate Christmas the way that we had planned.  Jake was still in the hospital feeling completely miserable and quite possibly didn't even know Christmas had come.  Randy and I had planned to trade off on the evening of Christmas so the rest of us drove to Egelston to have dinner together.  Jake would hardly swallow his own saliva, let alone eat, drink, or talk.  But, he did want to open presents.  We weren't expecting him to be interested in that so we only brought a couple of his presents with us and once they were open he wanted more!  He only stayed in the hospital for two more days and was able to finish opening his presents when he got home that Thursday.  We would like to take this opportunity to thank each and every one of you who helped make this Christmas a great one for us.  You know who you are, and we thank you from the bottom of our hearts.

The next day, Aubrey started throwing up and it proved to be a stomach virus when I started on the same path that Saturday.  Unfortunately, Jake, Ethan, Randy, my Mom, and Randy's Mom all followed.  Poor Jake had hardly eaten a thing for 10 days straight and it showed.  He lost a lot of weight in that short amount of time.  He started to feel like eating again on Tuesday and has been doing a good job since.  He was admitted for his 5 day chemotherapy treatment (#4) on Thursday (1/3/13) and his weight loss triggered a nutritionist to come check on him.  Even though he had been doing better, she changed his diet plan to a high calorie diet, 5 meals a day with snacks in between.  I am basically giving him food every 30 minutes all day long...my new full-time job, at least for the next couple days.  So far this chemo treatment has been a breeze, and I'm happy to report that accessing his port was actually a tiny bit easier this time. 

Randy and I have both been struggling a bit with Jake's appearance.  We are so saddened to see him looking so weak and frail.  I watched a video of him from his birthday this past June and he looks completely different now.  He was such a little boy with a round face and chubby cheeks.  He used to be so independent, adventurous, and confident and now he relies on us for everything.  What a difference a few months can make.  I am trying really hard to find the balance between comforting and babying and I've found that it's a difficult thing to do.  In the hospital it is comforting to me to snuggle with him, play with him, watch movies, and give treats to him.  At home, I want/have to try to get things back to normal.  I can't give him all of my attention without neglecting Ethan and Aubrey and sometimes it's loud in our house with all of the kids crying at once.  They are all so young and most of the time only Mommy or Daddy will do. 

The new normal is there is no normal.  I keep telling myself that.  The boy who only wanted to eat Hershey Kisses every day no longer likes Hershey Kisses.  The boy who used to climb and then jump off of everything doesn't even want to walk down the hallway without holding our hands.   The boy who is smarter than most 3 year olds now whines or talks in "baby talk" a lot of the time.  What can I do to get my Jakers back?

I apologize for writing such a disjointed post, but my mind has been jumping all over the place tonight.  Another year come and gone and I have a feeling that this will be the longest and shortest year of our lives.  We are looking forward to meeting with Jake's surgeon next week to discuss plans for surgery.  He'll be getting new scans done soon to check on his progress and to help determine what type of surgery he'll be facing.  For now, here's to a happy, yet tumultuous, new year!