by This week has been extra crappy at times. Last week wasn’t much fun either. Thankfully, this little guy knows how to put a smile on everyone’s faces and turn things around in an instant.
Amidst the crazy of the week he did get a good report card at his follow up appointments. We are going to go FOUR months before our next cardiology appointment. We are trying a new formula due to the fact that there are studies showing his prior one causing ricketts in children (his labs don’t show any issues as of yet, but better safe than sorry). We are also going to soon start to explore doing a blended diet for AJ – meaning that instead of just formula he will get blended foods – fresh fruits and vegetables – “real” foods. As tolerated. It’s a little overwhelming to start because he has specific nutritional needs, but it’s hopefully going to help out and work for the better.
In other news – we STOPPED his lovenox. He’s a year post-stroke. We have had no other markers or indicators and the only time he’s had issues is with central lines so we will plan to ensure he’s on a healthy dose of heparin anytime he has one. This means NO MORE SHOTS! For a year AJ has been poked twice a day – right side at night. He’s been covered in bruises not only from the shots but from every little knock of a toy or tumble as he was learning to sit and kneel and we’ve held our breath every time he’s bumped his head. Although it’s nice to be done, it’s also stressful. We don’t want to deal with another stroke again. That’s for sure.
We also talked to CHOP finally. Our evaluation date is currently set but because they also want an EMG to check to see what the status of all his muscles and nerves are, they’ll likely have to shift us to October or November to make sure they can get the doctor that does those in the OR too.
Not exactly what we wanted to hear, the closer we push to the new year the closer we get to starting over on deductibles, and our Medicaid doesn’t kick in for out of state procedures so it’ll cost even more if we cross the new year. Plus doing travel and procedures in the winter isn’t fun for anyone.
Anyway. The weekend is going better, everyone is seemingly back on par and Monday we should hopefully still be able to join everyone at pizza ranch for dinner so long as we can work out logistics. (Reminder: it’s from 5-9 on Monday at the pizza ranch in CR – next to westdale). AJ is showing off the fancy sign for the event in one of the pictures below.
