Life in progress


All About Alex – #AtoZ Challenge

I knew Alex was going to have health issues when I had my first ultrasound, 10 weeks into gestation. He had, I was told, fluid around his heart and at the back of his neck. Down Syndrome was ruled out a few weeks later via amniocentesis. It wasn’t until he was born and transferred to the nearby Children’s Hospital of Eastern Ontario that he was diagnosed with the second most prevalent syndrome: Noonan Syndrome. To the geneticist it was obvious at first glance. Barrel-chested; low-set ears; thickness in the neck; and widely spaced, bright blue eyes. It was all there, on top of the multiple heart issues.

His prognosis was bad. Without surgery, his cardiologist told us his heart could no longer pump oxygen through his bloodstream. He would die within a year. The surgery itself came with  a 50/50 chance of survival. It was a tough decision, yet an obvious choice. Just short of two months of age, he went to the operating room. About half-way through the procedure, the surgeon came in to let us know that Alex’s heart had stopped and he had lost all vital signs. They got him back after a few minutes by providing open-heart massage, but the surgeon said he would not resuscitate him again. It was time to close the suture and hope for the best. A couple of hours later we were told our little boy had survived.

The reason I go through this history when I’m here to talk about his deafness is, first, to explain why I reacted the way I did when I found out he couldn’t hear, and second, why he can’t hear. He was about four months old when I began to realize he wasn’t responding to noises. Since he was still in the hospital (he didn’t come home until he was eight months old), I had him tested right away. When the test proved he was profoundly deaf, I felt sad that he couldn’t hear me sing to him, and that he would never be quite like the rest of us, but hey – he was alive. Years later, I’m still realizing the impact of his difference in abilities, as you’ll see as the month goes on. Noonan Syndrome doesn’t include deafness as one of its genetic anomalies. The doctors told me it was likely the lapse in vital signs during the surgery which injured his brain. I had to wait to find out if he would have any other symptoms – as it turns out, I’ll probably never know.

It’s been a roller coaster of ups and downs, with oh so many laughs and challenges and opportunities to learn along the way. I hope you’ll enjoy reading about the ride.

Just before Alex finally came home (if I remember correctly, the weekend of the CHEO telethon in 2001 was his last weekend at the hospital) they filmed some of the inpatients to show at the end of the news. The baby at the end (2:24) is Alex.


…And Then Nothing Gets Fixed

I was walking out of Best Buy at 12:45 today when I got a call from Alex’s school. He was in the office, feeling unwell; would I come and get him. That’s not really a question. Ever. It’s a command. So I threw gently placed my newly repaired laptop in the car and drove over to get him. Best Buy had had my laptop for a week. It was shutting down without warning on battery power when the charge reached 66%. I figured it was a defective battery – they changed both it AND gave it a new hard drive.

Anyhow, I got to the school and was informed that my darling little son was feeling tired and wanted to go home. Yeah, not much of a reason. BUT, one I have no choice but to take seriously. First was the arrhythmia from the weekend, coupled with cold sweats a couple of days ago and then I was informed by the teacher that his lips had gone blue three times last week (thanks for letting me know sooner) and this all adds up in my mind to congestive heart failure. Regardless of the fact that he just went for an echocardiogram last week that showed no new problems, and ignoring the impish look of “I’m faking this” on his dear little face, I decided to take him to the emergency.

Six (count ’em) 6 hours later, we arrived back home. The EKG they did today showed there were no issues with his heart – neither did the x-ray. However, I must give honourable mention to the people who kept me entertained in the waiting room. The first was a heavily tattooed lady who lost her $1.50 in a vending machine and proceeded to inform a security guard at the top of her lungs, “IT WASN’T JUST A PENNY!” The second, and most impressive by far, was an elderly lady who clearly had no idea where she was, demanded in a tone fit for a Shakespearean Queen to be let out of her cage. Seriously, if that woman wasn’t still an opera singer – and her annunciation! It was out of this world!

Where was I? Oh yes, back at home. I ate my dinner while Alex was hooked up to his feeding pump and then I got my laptop out. New hard drive meant all the crap that comes with a factory-installed OS was present and accounted for, as was the particularly loathed Internet Explorer. So I’m sitting on my couch, miserably getting rid of everything I don’t want and … poof! 66% the laptop shuts down.

I’ll be taking the computer back to Best Buy tomorrow. Hopefully I won’t be taking the kid back to emerg. Still, don’t really know what’s wrong with either of them.