This past week, with a few days still remaining, our family has enjoyed holiday time. Time that for many reasons has been much needed and though I am still battling bronchitis it’s been restful. We went to Great Wolf Lodge, and Niagara Falls, the Royal Winter fair and we have made tons of time for ‘family’ time between the boys school schedules. I have had alone time (wow?!) and Tim has managed to get in a movie, a golf game and tonight he’s off to see the Bills play. Josh, who is (as I write, getting his MRI done) is once again my main reason for writing this post.
The last you heard from me the doctors were putting him on some new meds that they were hoping would buy us more time before the next surgery. She said that we would notice a change within ten days and that if we didn’t notice a change that we should stop the meds. I have been watching him (as you can imagine) intensely. Ten days past and still I watched, unable to trust myself or my eyes.
Josh is a different child these days. He’s happier (if that’s possible?), he’s full of beans, he’s chattier, he’s able to walk to and from school, he wants to play, he fights going to bed, he is almost at par with Kaleb’s energy levels. It has been a beautiful, fun, exciting thing to see this change emerge in Josh.
Our Cardiologist gave us enough meds to see us through the two weeks, and after a few days I went to the pharmacist and said that I thought it might work and asked him how long I had to wait before ordering more. He told me to come in a few days before we ran out to be sure because they had to special order it, so when we were getting close I went back to the pharmacy and asked him to order more but just smiled and said ‘I was hopeful it would work so I already ordered you more’ and he poured it out for me. He smiled and said that he hoped it would buy time and though I didn’t say it, my heart was screaming ‘it will!!’
That realization, the knowledge that this medicine may actually forstall the next surgery is a warm balm to my soul. The more I read about the advances in heart medicine the more excited I get about Josh’s future and the more time we can get means the better the chances he has. Did you know that they have already grown a heart from human tissue, put it into a rat and the rat survived?! Next steps are clinical trials and then maybe one day in Joshua’s lifetime they can really cure this thing!! How exciting is that?! A cure for CHD?? Amazing! God is awesome!