A Different Kind of Peace

June 18, 2020

A Different Kind of Peace (orig. published 10.11.12)

Here we are again - same room, same hospital, same city. PICU Room 722, Shriner's Hospital for Children, Philadelphia.

Only this time, it's different. There is no screaming. There are smiles. There are words and sentences that make sense.

I know it has been awhile since I last posted. The weeks following his first lengthening experience were our absolute worst nightmare. Until we were prescribed the wonder drug Neurontin about five weeks in. There was screaming ALL DAY LONG for at least four weeks, then the Neurontin was prescribed and the screaming slowly subsided. At the five week mark our boy was back. Not that he took up much less time than he had been in the BN days (Before Neurontin), but at least he was pleasant to deal with ever since.

So here we are again. Today, at 9 am Colson was wheeled away for lengthening surgery on his left leg. It feels like we were just here for the first one back in July. Time, fortunately went by faster than I ever anticipated. Today's six hour surgery included the removal of the fixator on his (STRAIGHT!) right leg, followed by a red cast all the way up to mid-thigh, and the addition of an external fixator device on his left leg. The outrigger seems to have a mildly different setup and isn't quite as high as before which is wonderful as it may reduce the occurrences of the bar hitting Colson in the face or stomach when he is carried or being silly. Regardless, we are over halfway through this process and I'm so thankful. And Colson is doing amazing this time around. He was ready for this he told us in the days prior to today's surgery. He wanted to get it over with. And so do we.

His cast will stay on for four weeks until his brace is ready, I have no further information at this time as PT hasn't stopped by yet (brace? what brace? )- tomorrow is usually the flurry of activity with respiratory therapy exercises, physical therapy and doctor follow ups.

The nurses all told us how amazing Colson was and that he was the smartest little boy they had ever met! He is cracking jokes like asking for a beer instead of water or juice, and making all of us laugh. He is getting tired and looks like he is about to fall asleep which will be good. There is a nasty rumor (from the intensivist) that the epidural will begin to wear off around 10 pm so I should be prepared for a turn of emotions. Until then, I'm going to enjoy my content boy and I'm going to continue to be thankful for everything that has come our way and for all the amazing people and opportunities we have available to us to help our son.

Leg pictures will hopefully come tomorrow, he is keeping his legs all to himself today.

Much love.

-J

PS: Oh yeah, and this happened last night! Go here: NBC26 Cares - The Oshkosh Inclusive Park Project - The Tabbert Family is famous!

For those who don't know, I'm part of a team trying to build an accessible playground in our hometown of Oshkosh. You can see more information about the Oshkosh Inclusive Park Project at our website www.oshkoshinclusivepark.com. Enjoy the news clip!