Home Sweet Home



JR and MJ reunion.

 We are grateful to be home for so many reasons including our own beds and shower. We camped out at my mom and dad’s house since their house is only about 12 min from the hospital and our house is about 45 min away. This is where we had JR (MJ’s almost 3 y.o. brother) most of the time as well. Dan and I took turns each night: one of us with MJ at the hospital, and one of us with JR at my parents’ house.

Unfortunately due to flu season the hospital was on strict respiratory restrictions so no visitors under 12 were allowed (including siblings). That was hard on the boys. I just have to share with you the picture I got when the boys saw each other for the first time when we got home Monday night. We had asked JR to be gentle, so he wasn’t sure if he should get too close to MJ – but look at the happiness in MJ’s face. They may get on each other’s nerves but their love is strong.

We are incredibly grateful to have MJ home with us to continue his recovery. He was sent home with a walker due to his instability. After not walking for almost 5 days and going through major surgery he needs to build his strength back up. The portion of the brain (cerebellum) they did surgery on controls balance and coordination. When his brain swells through the healing process his balance is unstable and he gets unsteady / dizzy. The walker is there to give him something to grab onto so he doesn’t fall when he gets the dizzy episodes.

His pain is so unpredictable at this point. He goes to bed every evening with pain, and wakes up every morning in pain. It seems to be about a 50/50 chance that the pain he wakes up with will last throughout the day and incapacitate him. He had such good days on Monday and Tuesday, then Wednesday morning his pain was severe and he threw up – so we called in to the doctor. I was worried that he would go backwards after having 2 good days – but according to his neurosurgeon the next month will be (in their words) a “roller coaster”. Because of the brain swelling and healing there will be good days, and bad days and it is unpredictable.

We are however getting better at figuring out some of the things that trigger his pain. His pain always comes if he gets up too fast (we knew that one), bends over (we knew that one too), hyper-flexes his neck (tilts his head in any direction too much), stays up too long/too active without laying down to rest, and jumps (of course..lol…he discovered that one on his own and informed us – typical boy).


MJ with his finished Cootie game.

For this week we are taking it easy of course. Going through something like this gives you an entirely different perspective on things and it is easy to take more joy than ever before in simple family time. To get MJ out and give him some fresh air we played a couple of games at the table in the backyard when he was feeling good, we watch movies, and most of all encourage him to rest. He gets a bit stronger every day. We are looking forward to starting his physical therapy on Monday 3/11. He may need a little bit of help with balance, but most of all he needs work on the range of motion in his neck.

Grateful for all of you checking in with us and your continued prayers and support!!!