Progress Is sometimes hard too.....

Henry is doing well today. His vitals are stable and within expectation. Shown here is Dr. Allan De Caen and Dr. Paul Daughty, with Nurse Sara looking on.

What I mean by the title is that Henry is moving forward in his recovery, but part of that forward motion includes reducing his pain medications ( morphine etc. ). Since Henry is still very weak from his surgery, he does not make a sound. Not a peep. Not a single teardrop. The expression on his face at times is beyond heart wrenching though. It tears a parent to pieces when there is nothing we can do except try to provide comfort. He seathes in pain, and it hurts us just as much or more. We gently stroke where we can. His head is very bandaged holding his Ventilator tube, his hands, arms and feet bound with IV's, so much so that we can not really hold his hand. We find spots of skin to stroke gently, hoping that he knows we are with him and that we are really sorry that he has to go through this. His legs, one foot and a bit of forehead get most of our attention. It's hard when a parents job is to comfort, protect and love their children, and we can only provide small amounts of each. 

We spend our days doing our best with Henry, while holding Owen close. 

( Owen providing a convenient example of what Henry will soon look like again :)  )

Magnus is not with us in the hospital of course, but we tell Henry about him. One day soon, the boys will be together. We had heard so many times over the last several months, that we would be busy, it would be noisy. We look forward to that day. We are more than up for the task and hope we are all home soon. We miss Magnus during our times with Henry, but there are no good answers to do it all.

Henry always has 'spare blood' available at the foot of his bed 'just in case'..

As we peer around the room of the PICU, the stories that are playing out are unimaginable. From hope to deep sorrow. Each child needs 1000 hugs, and it's hard to understand why they have been dealt this crappy hand. Some look scared, some look defeated, some defiant. All parents look worried and tired, but hopeful. 

This is what worried looks like in our house - Jill the morning of the surgery, Me the morning of surgery;

One man and I spoke the other night had a choice before him as horrendous as it could be. The question for him was - will his wife and he choose for their newborn baby girl to continue a life that has no hope of survival, or 'let her go' mercifully? The weight on their shoulders must have been one million times what we felt on the day of the surgery. We had no choices, no decisions, no options. That in itself was merciful for us. They do not have that luxury. The burden they will carry....

Magnus has several 'friends' here at RMH. Keira has taken a particular motherly liking to Magnus. Keira is 5 and says ' if I grow up, I want to have red hair.' My god, 'if'. She is a darling. Her chemo continues this week. 

Camryn has no legs and only one partial arm. She had a terrible virus ( RSV ) and Strep. She is Magnus'  age. She is here getting her prosthetics. She has a warm smile for us every time we come 'home'.

We have learned a lot while here. More than can ever be written or summed up on a blog. This type of thing changes people, of that there is no doubt. We are changed, both Jill and I. 

Henry is doing well, given the hand he has been dealt. We know this, and he is an inspiration to Jill and I. He is 6 lbs of tiger, and fights like 600. Good boy Henry, keep it up, and we'll do all we can from here. 

Here is Henry this morning, sore but defiant, strong and yet so fragile. 

Henry is lucky to have you all as his cheering section. We get all your notes and every one is special and appreciated. We can't return them all, but we get them and they all really help. 

thank you

Hal