|Tyson sporting his new MedicAlert bracelet|
For the past two weeks Tyson and our other children have been involved in swimming lessons at the Shelburne Rec Centre. I was so nervous about how Tyson would behave. When he has his mind made up about something, he sure makes it known to the whole world! I was able to speak with the swimming instructors beforehand, to give them a little heads-up about Tyson's condition and also his moods/behaviour. His swimming instructor Caely was *amazing* with him. Not only did she get him excited about swimming, she also didn't put up with his attitude when he didn't get his way. But she was gentle about it. She was friendly and loving, and you could really tell she loves her job. Yesterday was the last lesson and I made a special point to commend Caely on how good she was with Tyson, and as I was thanking her I started to get very choked up. And then later I asked myself, "Why did I get choked up about this?" I think it's because Tyson is doing things we never imagined he'd be able to do. I never envisioned that he'd be in swimming lessons like other healthy children his age. We are so thankful that he was able to experience this along with our other children.
Not only do we feel blessed by God's grace and mercy to us as a family, but we also have been so blessed financially as well. When one has a child with health concerns, there are so many medical expenses that come along with that, even though Canada has one of the best health care systems in the world. We have never once seen a bill from any of Tyson's open-heart surgeries, heart catheterizations, echocardiograms, ECGs, EEGs, chest x-rays, lab work, hospital stays...the list goes on and on. The Ontario Health Insurance Plan covers all these expenses. And there are always other non-medical costs like hospital parking, meals, lodging, gas expenses... that we pay out of pocket. We have been blessed by foundations such as the Jennifer Ashleigh Children's Charity who have helped us cover gas and lodging expenses in the past. Ronald McDonald House has been a home to us during three out of eight of Tyson's lengthy hospital stays. We're also thankful for the ACSD program and the Ontario Disability Support Program (ODSP) which covers all of Tyson's medication and dental expenses. Without organizations like these, the extra expenses incurred from having a special needs child would certainly become burdensome! Cardiac Kids even gifted Tyson with a fancy CoaguChek device so we can check his INR levels at home!
We've also been so blessed by our church community when we were in times of financial need. There have been times when Tyson is hospitalized that Brian has to take some time off work due to the nature of the illness, or because he's had surgeries, procedures, etc...and it is a joyous and humbling experience to find an anonymous donation from in our church mailbox from some of our brothers and sisters in the Lord. (Thank-you for those gifts, you know who you are!) Friends will give us gas or food vouchers to cover the costs of traveling and being in the hospital, others will help out by taking our older kids while we stay with Tyson. We are so so so blessed!
|Now all he needs is a tv in his room and he's all set ;)|
Tyson also got his new MedicAlert bracelet in the mail this week. It is actually pretty cute on him. We finally decided on what to inscribe on the underside of the bracelet, which was not an easy feat given the limited amount of spaces allowed on the bracelet and Tyson's multiple health concerns/medications!
In consultation with Tyson's cardiologist, the medical professionals at MedicAlert, and a very friendly paramedic ;) we finally decided on the inscription to put on the bracelet. You can click on the pic to enlarge it to see the inscription.
In layman's terms: basically this means that he has complex congenital heart defects (CHDs) involving a Hypoplastic Right ventricle, he's had the Fontan surgery, he has asthma, and he's on a blood thinner.
All is well right now. Tyson has recovered nicely from his pneumonia and we will NOT be taking him off his asthma meds anytime soon. He sees Dr. Murphy again on Monday and I'm sure he will be happy with Tyson's progress.