We owe many thanks to a construction worker and nurse who found our van keys after a good bit of frustrated searching. (You know the relief of being discharged and how ready you are to get home and REST?  …well it can contribute to angst over lost keys. We survived.

Eventually, thankfully, prayerfully they were found and we got our boy home for a few hours of sleep. 

Didn’t love the bandages, so he took those off himself around 4am this morning. Quite a feat given his movement disorders…but he must have been very bothered by the head-dressing, or maybe particularly distressed by the whole Princess Lea look.  

The incisions are longer than we thought (about 2 inches each).  Poor guy would really like to get his hands on those stitches, so we are working on creative solutions to keep those hands off. 

We were able to put his cochlear implants back on for a bit today. He did indicate that the incisions bother him but Tylenol is managing things okay for now. 

This afternoon he was able to use the cochlear implants again for about an hour and let our boy HEAR. Recovering without sound? It seemed tough. (Challenges like this, his perseverance through them, and all that Kernicterus kids endure reminds me that he belongs to an elite class – #everydayOlympians.)

MRI down. DBS coming right up. We check in Thursday at 7am. 

Grateful for all of the prayers and support and the return of those smiles that let so much light in!!!!