Wednesday, March 2, 2016


If you are Jacob, you run a marathon every single day. If he's lucky, he might get away with a half marathon once in a while. But most days, Jacob is literally running a marathon. That is the best way to describe what it takes to be Jacob. Jacob's power house (mitochondria) isn't working. To breathe, to eat, to simply live takes a lot of energy, energy Jacob doesn't have a multitude of like the rest of us. Jacob knows no other way than approach each day like a marathon, often on very little sleep. This is what makes him our amazing boy. Jacob came home on Monday afternoon. Tuesday, he was back in music therapy bossing his music therapist around and asking "mom to be quiet" with his talker. Our boy felt better again.

Everything in Jacob's life is a marathon, it's never ever a sprint. Looking back at the last two hospital stays, my nerves got seriously tested. Not once, not twice, too many times to count. I felt I was on an emotional roller coaster. Every time I lowered my guard, I had to quickly rally again for a new emergency situation. Running is my stress release. On Saturday afternoon, after the big blow of Jacob's medi-port possibly not working less than 24 hours after surgery, running didn't really work for me. I did get through my 6 miles, but I felt so weak and so slow. My mind and body were not in synch.

On a positive note, Jacob's incision from surgery is healing nicely. I must say Jacob has shown very little pain from the actual surgery. It's really odd to be able to feel Jacob's medi-port under his skin now. With the old port being so deep and covered by lots of tissue, it wasn't easy to "feel" it, nevertheless accessing it.

Jacob's GI issues are definitely a marathon, maybe even a 100 miler. It took us three long years with many hospital stays to get Jacob's ulcerative colitis under control. Dysmotility is a daily struggle in this house. We have our weapons to help Jacob pass stool, and the plan of action can change multiple times per day. To stay on top of Jacob's stomach issues is absolute key to keep Jacob feeling well. The question of the day is "did Jacob poop?"

After the endoscopy, the biopsies and more lab work, GI is not sure if Jacob has pancreatitis or not. He could have a new diagnosis of micro lipase. This would mean Jacob has elevated lipase, but not pancreatitis. Before we know for sure what we are dealing with, it will be hard to have a long-term plan in place. We came home with new orders on how to better manage Jacob's distention that can get so bad it even impacts his breathing and gives us a direct ticket to the Emergency Room and a hospital bed. I am hoping and praying we will be able to manage Jacob's tummy from home until we see Jacob's GI doctor mid March. At that point, we are hoping to also discuss more of a long-term plan for Jacob's stomach once again.

Life with Jacob, and life in general, is not a sprint, it's a marathon. It’s about never giving up, about persevering, of finding resilience. It is about pacing ourselves, to take things “one mile at a time”, to gradually find our way through life. Lately, I have been pushing through life too hard, and it’s time to cut myself some slack (easier said than done), and finding my pace again. This is to Jacob's marathon, and for our boy to catch a necessary break.

Love, Maria.

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