Sunday, July 06, 2008

More Ups and Downs on Our Journey

Hey Everyone,

It's been a month of ups and downs for us here at the Isaac Foundation. A few weeks ago, we hosted an incredible Celebrity Golf Tournament. We were pleased to be joined by Rob Baker and Gord Sinclair of the Tragically Hip, Ryan Malcolm of Low Level Flight, Larry Mavety of the Kingston Frontenacs, Former NHL great Bart Crashley, and the Speaker of the House, Peter Milliken.


24 teams joined us for the event and helped us raise over $15,000 to support our hope for a cure for Isaac. In addition, Susan Henry and Janet Grace from Royal Lepage were on hand to deliver a cheque for $2,000, part of their charitable donation from profits on the houses they are buying and selling.

Ellen did an amazing job organizing the silent auction for this years event and it was wonderful to see the response from our guests. We send out a big Thank You to all of our sponsors, which included West Jet (tickets to anywhere in Canada!) and Via Rail (first class trip to Quebec City!)

Shortly after the event, Isaac was scheduled to have surgery. He's been having difficulty hearing lately and we decided it was best to have tubes put in his ears to try to correct the problem. At the same time, his breathing hasn't been great. While he was under, the doctors figured they would also take out his tonsils and adenoids.


A few days before the surgery, the hospital called and scheduled us in for an emergency sleep study in order to gauge the need to take out the tonsils during this surgery. With Isaac's airway being poor, it was best to have a look at the need for the surgery in the first place. Isaac and I headed off to Toronto for the overnight at a private clinic on Young Street.

It's amazing how incredibly brave Isaac is during these visits to hospitals, clinics, and appointments. While I wasn't nearly as calm (or brave), Isaac rose to the occasion, helped the clinicians hook him up to the machines, and slept beautifully, all while maintaining his cheerful and positive attitude throughout.

Before we left in the morning, I had to fill out the survey, ranking Isaac's sleep with how he normally sleeps. It seemed to me that this was one of his best! Very little snoring and, seemingly, very few episodes of his breathing stopping during the night. Apparently, I was wrong. They called us a few days later to say that he has severe obstructive apnea and had 48 episodes of his Oxygen saturation dropping per hour. Surgery was moved forward and we head into the hospital tomorrow. We expect our stay to be at least a week.

I'm not sure if news like this will get easier over time. We had been feeling that things were going very well and had started to relax a little bit. Maybe we let our guard down but, for me, getting the news that this disease was still progressing was very hard...like reality was setting in again and I wasn't ready for it. I just want everything to be fine, perfect, for our son and it's moments like this that remind us how difficult it will continue to be as we fight to save our son. I've been trying to remember what my friend told me during our last crisis - "Everything always works out in the end. And if it doesn't, then it's not the end."

But for some reason, I'm more nervous about this surgery than I have been about any of the other ones. Perhaps it's because I know that his airway is in such poor condition and that him being put to sleep will be a lot of stress on his body, or perhaps it's because I've had a bit longer to wait before the surgery actually takes place. Either way, I'm nervous and just want Tuesday to come and go without incident. After that, all hopes are that his hearing will improve with the tubes in, and that his breathing will normalize with his tonsils and adenoids out.


Anyhow, we've decided to head out to the John Mayer concert in Toronto on Monday night to celebrate my birthday and to give Isaac a fun experience before his week in the hospital. John Mayer is Isaac's FAVOURITE singer and, lately, everything he's been doing has been John Mayer related. As I type away, he and Gabriel are dancing around and giving their own John Mayer concert, watching the new Mayer DVD as they do so. The picture to the left is Isaac having his "John Mayer Picnic" while he eats his dinner (I know...dinner in front of the TV...sorry!) But he couldn't tear himself away from the DVD in order to eat supper last night, so we all decided to camp out and watch together. Isaac and Gabriel danced and sung all the songs. It was a precious moment, and one I'm glad we all shared as a family.

I've been trying to arrange a Meet and Greet for Isaac, unfortunately without much success. But seeing Mayer on stage will be exciting for him and will hopefully start our week off on a good note. Below is a video that Isaac recorded for John Mayer while we were getting ready for the sleep study. You never know who's watching!
Not sure when we'll get a chance to update again, but we'll try sooner rather than later.

Best,
The Isaac Foundation

4 comments:

Anonymous said...

Isaac , good job with the video, hope you had a real good sleep and I love John Mayer too. What an awesome time we all had at the golf tournament and what fun to see you riding in all the golf carts, Talk later little trooper.

Susan LaBrie said...

Just wanted to wish Isaac good luck with his surgery. Hope you have fun at the John Mayer concert tomorrow and I'll be sending all my positive vibes your way on Tuesday and through the rest of the week :-) You are such a brave and inspiring little boy!

Christine said...

This is such an inspiring story. The best of luck to you. Isaac is such a strong, brave, soul and I appreciate sharing your story with the rest of the world. I hope you had fun at John Mayer's concert! You're so smart for understanding great music at a young age!!

JMislove312 said...

That video is the cutest and I really hope that John gets or got to see that. I think he would find it very cute. =)