For me, lack of sleep is directly correlated to my ability to view a bad day as a good one. I’m tired, therefore today kind of sucked.

The good news is that we are home. We were given our walking papers and so managed to escape the hospital’s clutches at around 3:00. We have been discharged many, many times before, so I knew that there was no way we were leaving before noon, so I mentally set my acceptable departure deadline to 3:00, and managed to achieve that goal.

A bad day is a relative concept. To some, being late for work and having a spat with the spouse might constitute a bad day. To others, having to spend the whole day keeping a toddler flat in bed on a neurosurgery ward might be a bad day. But we have experienced truly bad days as frequent flyers at Sick Kids, so I prefer to say that today was simply challenging, instead.

Gav has come through surgery well! We are breathing a huge, fierce sigh of relief and hoping to leave hospital tomorrow or the next day.

The shunt was blocked. That is what we had hoped to find. It seems everything went as well as we could have hoped. Dr. Dirks and the team were able to fix the blockage with minimal difficulty and Gav was in the OR for just long enough for me to work myself into a nervous state. The relief and joy I felt on seeing the doctor’s smile and hear the words “everything went well” cannot be described.

We will be getting an early start tomorrow to be at Sick Kids at 8:00, in preparation for Gav’s 12:00 shunt revision surgery. We are still going forward on the premise that all will be well. What we would like to see out of this surgery is that there is, in fact, something wrong with the shunt which can be easily corrected, and this in turn will ease the pressure on the open area of Bean’s little noggin. Of course, there are risks, as with any surgery, and given that statistically we reside in the “less than 1% of the population” zone, I am always fearful that the potential risks will become realities.

We had an early start this morning and contended with rain and streetcars to get to the hospital on time for the 9:00 meeting with Dr. Dirks. I had already decided ahead of time that emotions were running too high for me to be a part of the meeting, although it pains me to not be “in the know” as to what was discussed. I also didn’t want Gavin to hear the conversation, and thought it would be a calmer experience if Rational Craig attended without his lovely wife and Bean.

I don’t even know how to write this. Just when I thought all looked well for a summer of relaxation, yet another bomb gets dropped.

I had an unsettling call from our neurosurgeon this morning, and I’m still reeling. Gavin has quite a large bulge on the back of his head where his skull doesn’t quite close. The surgeons were unable to repair it entirely after last year’s surgery. There has been speculation about what has been causing this bulge, the most likely candidate being fluid. However, since all seemed well, we all agreed to leave well enough alone.

Once again, the clouds of scanxiety roll away and we are left content with the knowledge that Gavin’s scan has come back clear. NED. So we wait for another three months to pass and then return to MRI.

Bean was a star this morning, no complaints on the lack of breakfast and quite agreeable in going to MRI at 7:00. He became a little bit quiet as we chatted with the team about his various concerns. He then got quite upset as we had to hold the mask to his face until he fell asleep, but luckily was out fairly quickly.

Most of us possess an object or thing that we consider lucky. Perhaps it’s a piece of jewellery or an item of clothing. Perhaps it’s something less tangible like a number or symbol. Maybe you have a special ritual that you enact before important events, to bring you luck and keep your loved ones safe. Throughout the long months of Gavin’s treatment, certain objects travelled with us and became indispensable as they seemed to take on the power necessary to see us through the darkest days. And certain rituals became deeply laden with meaning.

We are having some connectivity issues at home so I’m forced to keep this brief, but just wanted to let everyone know that Gavin is going for his MRI this coming Wednesday.

As always, we are dreading it and praying with every ounce of fight in us for a clear result. As always, we are so grateful for where this journey has taken us, and know how blessed we are.

A small sample of chatter transcribed while Gavin plays with his “guys.”

Hmmm, i don’t know about this. I guess someone is going to fly off. Uncle Ryan and Daddy are going to fly off. We are going to fly off in our plane! And then… I need this guy to get in the pilot seat. But he’s not working! Mama, I need this guy to sit in the pilot seat but he’s NOT working!!