We had another ECHO today for Joshua, he’s such a trooper! In some ways it’s so great that he is so good but it’s sad too sometimes to see how he knows what they are going to do before they do it… he sticks out his finger for the SAT’S monitor, holds his arm up for his BP check, lays down when the he is put on the ECHO bed… all these things are a testament to what he has already gone through and I am so proud of him but saddened at the same time. I wonder what he will remember, if anything? Or, is this just something he will grow up thinking is a normal part of childhood and not really realize that life isn’t supposed to be full of ECHO’s and ECG’s and all the other random tests that he goes through for Cardiology, Neurology, Eye clinics, etc.? Is it wrong to want him to have normalcy? (That is rhetorical of course… just thinking out loud here…)
His ECHO results were not what we had hoped for, his heart has not shrunk at all and his Triscuspid is not any better but rather looks a little worse… and he has an elevated heart rate which is a concern. However, his new pulmonary valve is looking good, he has gained 1 kilo, this is big! He hadn’t been gaining weight well before surgery so to have a whole kilo post op is amazing! His energy levels are so much better and he is eating well, and in so much better spirits. He is a different kid in a lot of ways so I am thankful.
The temptation to let this get me down is there… I won’t lie to you. It’s been a very difficult week on a number of fronts and this is not what I had been hoping for in regards to this appointment… BUT… I am still feeling the warmth of the shelter God is using to protect me. So how can I possibly be anything but grateful? This is just a reminder that I need to keep praying for that miracle, keep walking that path of mustard seeds, keep finding hope and love and joy in the little things that life brings our way. I have to remember to keep thanking God for one more day, one more moment in life. There is enough worry in today without heaping tomorrow onto the pile… isn’t that what God says? 🙂