Almost There…

Last Monday Ben could not grasp your hand with his left hand and squeeze it in a way that you could discernably feel it was being squeezed.  His head was also sitting in a twisted way on his neck that made me shudder and think…”oh my God – we’ve made it worse”.  He could not take 10 steps without having excruciating pain.  He was unable to sit in his wheelchair for more than 10 minutes without sobbing because of neck pain.

Today I watched him manipulate a Transformer ball easily with both hands.  I got him to squeeze my hands and could feel a good response.  We walked to the other side of the hospital, went upstairs, grabbed a treat from the vending machine and then walked back to our room.  I notice that when he is standing his neck is far from perfect, but it is much stronger and straighter than it was last week.  He is able to stand while showering; today was our first time showering since surgery.  We continue to struggle pain when he is sitting in the wheelchair.  I Macgyvered a little something I called ‘marionette traction’ on Saturday to see if I could extend his time in the chair by taking the weight of his head off his neck (this is the way your mind operates post-Frankenhelmut….you can take the helmut off, but its presence is always there).  I would hold the traction up (rather awkwardly) while rolling the chair.  Given more time and tools, I was going to put a halter on my neck to hold up the marionette bar, but we didn’t get that far.  Ben was far less impressed by my Macgyvering skills  than I thought he should be.  (The main photo here is of Ben enduring my traction as it balances precariously on the top of the chair while I took the picture.)  Unfortunately, it didn’t really work, due to the agonizing pain thing still being present, but today we figured out a way to sit sideways to allow him more comfort and mobility.  He continues to work on stuff every day.  Even unprompted, I see him raise Lazy (his left hand who he now calls ‘Getting Strongy’) up to touch his bear.    Tomorrow it is supposed to be 22 here, and this little boy has not had fresh air on his face in over 60 days, so I think that might be our .

In order to get discharged, we have to be able to sit in a chair for at least four hours (probably more) to endure our flight on the way home.  We are slow and we are steady…checking off our list one thing at a time.

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5 thoughts on “Almost There…

  1. In Transformer lingo, Jack says your Optimus Prime. High praise indeed. More power to you both (PS Karen, you’re at least BumbleBee)

  2. Karen,
    We all know your son is amazing. And we remind him of that as much as possible. We forget to remind you that YOU are amazing as well. So many days away from home, from family, from your normal. You and Ben have created a new normal (that changes daily…even minute by minute). You stay strong for your son…for your family, you make Ben work hard on recovery, you keep him laughing. You are there to wipe his tears and there to soak up his laughter. I imagine you are shaking your head right now saying “that’s just what us moms and dads do.” That’s right, that’s what the GREAT ones do. You and Jessy are amazing. My simple words tonight just don’t do you justice. I have such respect and love for you. Keep on, keepin’ on. That’s all we can do…and sometimes that’s all that is needed. Goodnight!

  3. Hi Karen and Ben,

    Thanks for all the great updates! it is great to think that you guys might be able to get outside for a bit tomorrow and breathe in a bit of fresh air and feel the sun on your faces 🤗 I will be hoping that you guys can do that! Ben sure seems to be making progress! I’m glad to hear that his hand is gaining strength and he is able to use it. Anyways, you both are amazing and my best thoughts continue to fly your way ☺️

  4. You guys are rock stars!!! Hi from Margot … She is trying out a morning at daycare today. Thinking about you guys a lot. 🙂

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