I have been moved to write this update several times over the last couple of months, but I haven’t been able to actually sit down and do it. So what stopped me?
Many of you have told me you were impressed by how positive I was in the first few posts. The truth is I haven’t always felt positive over the last few months. Having James home from the hospital by myself, having Alex back at work full time, it was hard. There is no other way to describe it.
I have spent the past 3 months trying to find this mysterious thing commonly referred to as “normal”. I’ve found myself hearing/using that word a LOT lately.
Doctor XYZ: “What does a normal day look like from James”
Therapist: “The normal range for X developmental milestone is….”
Me: “How is that different from a normal baby…?””
What I have to keep reminding myself is that “normal” doesn’t exist. James is writing his own story. Yes, we can work to get him on a schedule. Yes, there will be days that are more typical than others. But expending energy trying to figure out how he compares to “normal” is a waste of time and could be a major point of stress if I let it be.
So what have we been up to?
Over the past 13 Weeks, we have gone to 12 doctors’ appointments, and had 12 therapist visits. We will average 1 appointment a week with various specialists through his first year. At that point, hopefully, we will be able to go longer in between visits.
Why so many appointments?
Some were typical pediatrician appointments, some were following up from his hospital stay, some were introductory to help us understand his diagnosis, and some were to prepare us for his upcoming heart surgery.
When is he having his heart surgery?
This is the (late) update that is going to get me in the most trouble with the public… James is having his heart surgery next Tuesday(1/19). We found out the week before Christmas that the cardiologist wanted to move ahead with the surgery earlier than expected. Everything is fine, but at the slow rate that he is growing, they feel it would be more beneficial to go ahead and fix his heart now rather than wait.
Why is he having surgery?
James has what is called a Large VSD (Ventricular Septal Defect).For those of you who know someone with this defect, it is fairly common. His specific hole is not correcting itself like some others may have, and that is why we are having it surgically closed.