NICU Follow Up: "8" month appointment

We're hanging out in the neonatal follow up clinic today. It's through Mary Bridge as Job was in their NICU for 36 hours before he transferred.

It's been a good thing to see them every 4-6 months instead of Seattle Children's because they are so unaware of his cardiac issues that they are really just looking at his gross and fine motor development. Of course we give them updates on his cardiac stuff, but I realized today that there is a benefit of being in a separate system for this reason.

I am so deeply thankful for the various services Job receives. Today's OT consultation was phenomenally helpful! I guess I think of Job as my little research project sometimes and these consultations as my oral history interviews and find some measure of research satisfaction in studying his cardiac condition as well as all of this new-to-me childhood development information.

OT gave some great suggestions about ways to increase Job's intentional toy manipulation, about table foods that would be appropriate for him to begin, and dancing/large muscle movement ideas to begin to incorporate. Even though childhood development was never one of my interests, I am really enjoying learning more about the science behind this discipline. Certainly seeing the necessity and the effectiveness of it play out right in front of my eyes increases my appreciation of it. I want everyone to be in therapy! It's becoming my soapbox to other CHD parents because it has completely changed Job's life in such positive ways.

Job is certainly still working with a significant development delays, but he IS making progress. I have to remind myself that it's good for me to see his progress through his therapist's eyes sometimes, because I do get discouraged (like last night, filling out the surgery for today's appointment, being reminded how Job can't do many ~8 month old skills). It's slow progress, but it's definite and appropriate. It's progress.

Everywhere we go people stop us to smile at Job and talk about/with him. His sweet, cheerful spirit just shines through and people take notice. Why a little baby is on oxygen is also *quite* the conversational topic.

While we were waiting for our valet parking today I had a pretty lengthy conversation with 8-10 year old boy about how crazy it is a for someone to live with half of a heart. Again, it's good for me to have these conversations over and over and over again, lest I forget the wonder of Job surviving on such a compromised physiology.