MACE checkup

 We had our follow up with our doctor for Nick's MACE.
So it was a day back at Sick Kids
Nick was excited to go to the Hospital (a feeling I want to keep). I had in my mind what I wanted to do (deal with the granulation tissue). But the MACE itself is great and we are so happy with it!

Well, it didn't go quite like I had in mind. The doctors looked at it and said it was healing well, that it was cosmetic and will eventually improve. This was not what I wanted to heal. I really wanted to do the Silver Nitrate to get it all healed up now.

The doctor listened to me. Dr Lorenzo is great (and as he came very well recommended to me, I recommend him to anyone going to Sick Kids). But in the end he explained why we would`t be doing it.
To try to heal the granulation tissue (with the silver nitrate) there is the risk that we would heal too much, or in medical terms stenosis of the stoma. So the actual MACE stoma may close. I do not under any circumstances want the stoma to close and have to redo the MACE.

Actually looking at the belly button. It does look better than it has in a while. So we will keep doing what we`ve been doing. Using the Milk of Magnesia, tea tree oil and keeping it open and not covered (and keeping Nick`s hands away from scratching at it).

We are cleared right now, and will continue to follow up with the urology clinic at Bloorview.

Our heartfelt thanks and gratitude to Nick`s health care team for our great experience with the MACE. Dr Lorenzo and his NP Abby!

MRI time

It is that time of year again.

The yearly MRI.

We got the appointment card in the mail in June, but I didn't think much of it until a couple of days before.

But then I started getting nervous.

Last year Nickolas was not a happy camper after the anesthetic.

He screamed and cried the entire ride home.

And now he's 1 year older, one year more aware of what is going on. So then I started worrying about how he would be.

I wasn't sure if we should try to prepare him a little bit, or just go with the flow.
I decided to jsut leave it as "a trip to the hospital" and go from there.
Nick's brand new t-shirt had arrived, so I figured it was a perfect time to show it off.
And even though we could probably have carried him in and out of the appiontment, I decided to take his chair to let him move around if he wanted to.

Nick didn't really seem to notice that he wasn't allowed to have anything to eat or drink.
He wasn't too sure about the hospital gown, but we got in relatively quickly.
We even skipped the pre-sedation waiting room.

Nick had a little bit of time to look around and explore the sedation room (I don't know what it's called, but it is where he goes to sleep before he actually goes into the MRI).
He was excited that there were characters on the ceiling.

We brought his knight to see if it would help him explore the equipment and room.

  

After everyone was ready it was time for Nick to lie down. He was not happy.
He knew that something was going to happen and he didn't want it to.
He had a mask that went over his face with his choice of scent (watermelon).
He was afraid and crying, I touched him and kissed him and he slowly drifted off.

Then it was Kyle and me - distraction time for about an hour.
Since neither of us had eaten breakfast (since Nick couldn't it wasn't really fair to eat in front of him), we headed off to the cafeteria.
And then the gift shop.
Bad idea.
Between Kyle and I we both had armfulls of gifts and ideas to buy the kids. We put alot back, but did pick up something special for Nick for when he woke up.

It took about 15-20 minutes for him to really by awake, but he thought this new dinosaur was great!

We even got a small 'roar' out of him.

So now the dinosaur has a name Roary

Nick didn't want to let him go.

Pretty soon we got some smiles out of him.

And he drank a whole juice box.

So we were ready to go.

No tears, no crying. He bounced back amazingly well. So much better than last year.

We also got to take home the mask that smelled like watermelon. Hopefully we can do something about that fear about the mask right before going to sleep.

Now I just have to try not to stress about the results...

Happy and Healthy Baby Boy!

We had our neurosurgery appointment this week.

2 hours to get there, 30 minutes appointment - no waiting, and 2 hours to get home. We did the subway experience, and I wore him down and then carried an umbrella stroller - which I didn't really need. Everyone in the subway thought he was very cute.

Anyways, we got the A-OK!!! Everything looks great, we'll see him again in 1 year and get another MRI. Sounds great! So I'm officially labelling my kid. Yup, he is a happy, healthy baby!