Great Report

Blake started off his Monday with a VERY happy reunion with his awesome friends at preschool! He went with me to drop off Aidan and Riley so he came into his class to say hi! He received the most warm welcome anyone could imagine from his amazing teachers, his favorite friends and the awesome moms of all those friends. Although he was quiet, he had a big smile and I think it filled him up.

From there we headed to his cardiology follow-up and Blake got a great report. He continues to heal well and move along with Superman like strength. Our doctor said that Blake's heart looked "remarkable" and that it looked like a different heart. Thankfully, Blake's lungs have stayed clear of any fluids so he was able to cut his remaining diuretics (Lasix and another drug meant to hold the potassium that he looses on the Lasix) in half. Blake also came home on an aspirin and that was stopped. The best news on the medicine front is that we have stopped the Amiodarone....this was the drug I mentioned earlier that he has been on for over 1.5 years that has bad long term effects (thyroid damage, glaucoma, etc).

There is one small concern regarding Blake's heart rate which has been abnormally high since last Sunday. A normal heart rate for a 3 year old is around 95 but Blake is around 130 and when he sleeps he is only getting down to 120 when he should get down to his pacemaker which is set at 100. There are a here are a few things it could be...his EAT (irregular heartbeat which landed him on the Amiodarone) is coming back or there is an issue with the heart function but it is more likely that his heart is just having to work hard because his left ventricle is enlarged and stiff. Blake does not seem bothered and everything else looks so great that we are hoping/assuming it is the later. He will go on a 24 hour heart monitor after another follow-up on Monday to confirm that.

Things are settling down at home and we are getting back into our routine. I am still trying to get through stacks of mail and catch up on email and texts. I also just realized today that Mother's Day was Sunday....I had put it out of my head that we would be anywhere but the hospital in Boston. I am feeling very blessed to be spending it at home with my whole family!

We continue to be overwhelmed by the love, support and prayers for our family. Thank you!