Friday, May 13, 2016


School is coming to an end. Middle school is coming to an end for our girl. Work is ever changing being in the middle of an acquisition. Jacob's health is changing weekly, sometimes daily. Spring is turning into summer. With warmer temperatures, we typically have changes in Jacob's care. This is once again true.

I am typically an early adopter of change. I know I am much more productive in change than status quo. Change makes my brain work. It challenges me. But there is that one area I am not necessarily looking for change, and that is in Jacob's nursing care when it works. We are once again approaching change. Jacob's dear nurse Ana is reducing her hours with Jacob due to making sure she can keep her back strong and safe. Jacob is constantly growing, and is now weighing 75 pounds and is almost as tall as her. He is a big boy, who needs help with all transfers. Due to his multitude of issues, Jacob can't stay in any given position for very long, He needs constant change of position, and there are too many diaper changes in a day to count. Right now, we also have a knee mobilizer on his right leg to heal a tibia fracture, adding weight to any lifts we do.

We're in a better position than we have been in past years. We are today with a larger nursing agency committed to Jacob's care. We're not loosing our day nurse, she will just work fewer days. This means a lot to us, since nurse Ana is a really great fit for Jacob and us. We are also lucky that we have a young, genuine, and smart night nurse who is very excited to start working days with Jacob. It does mean we will be without night nursing for awhile until the agency can find a new night nurse. There is no break in Jacob's care. He needs monitoring around the clock, feed and medications always scheduled throughout the night, and always watching for seizures and other vital signs changes around the clock. It's something Joakim and I will have to step up.

It also means training our new day nurse, and once again give our trust to somebody else for our boy. It's a big responsibility, and I do get a little antsy before I fully trust a new person on Team Jacob. There is so much knowledge we're carrying around when it comes to our boy. I sometimes feel as if Jacob is a part of me, and I just know when something isn't right for him. I feel it in every fiber of my body. Maybe it's a mom's intuition? It's time to coach and lead someone to get that Fingerspitzengefuehl you need to keep Jacob at his best. To keep our boy happy and healthy.

More than anything I think it's a realization how big our boy has become. There is not a day going by without my gratitude for having Jacob in our lives. But he's not a little boy any longer. He's a big 10 years old boy. I have so far gotten by carrying Jacob without any back or other injuries. I think it's time to start using that ceiling lift track system we have had in our house for two years now. We're also very lucky to be able to get an adjustable adult changing table for Jacob where we can do a lot of his care at each person's level. Right now, we do all the care on a therapy mat in Jacob's room. I actually love our setup, but it's a big lift from the floor up and then carrying him through the upstairs to the stair lift. Jacob would also be more comfortable, and safer.

Change is in the air. I remember being really worried about work and nursing changes this time last year. It all fell into place, and turned into a really good year for all of us. I'm going to hold on to that thought as we're once again approaching change. It all happens for a reason.

And who can't be happy when Jacob ends the week with simply not being able to stop smiling after having had a rough week of stomach issues and long seizures?

To change. 

Have a great weekend everyone, Maria.


  1. Speaking from personal experience since you were one of the first people I met & trained under at FX, I know you are the 'trainer extraordinaire' and there's no better person on earth to train any of Jacob's nurses & caretakers :D

    1. Kathleen, you're so sweet! I loved working with you!