Life continues to operate pretty much low-key. Up to this point we've been having check-ups every 3 weeks. Our neurosurgeon is reallly happy about Josh's progress and now feels comfortable to see us every 3 months.
We had a bit of a concern on Labor Day. We had been noticing that Josh's apnea monitor had been going off quite a bit for low heart rate over the past few nights. It also seemed to be becoming more frequent as each day passed. We called Children's Hospital and they decided that without seeing him, they couldn't give an accurate diagnosis. So we went in for 2 nights while they monitored him. After comparing his data with that from his sleep study, they decided that it was just a matter of him getting older. Therefore they dropped the threshold to 70, rather than 80 which is where it was. We are praying that after his next sleep study he will no longer need the monitor. More often than not the monitor will alarm at 2 am because Joshua scratched his chest and the leads came loose. We're exhausted and deaf (I can't even explain how loud it is!).
I've been meeting with his PT and OT with Early Intervention. It's been really fun learning different activities that help build muscle strength and balance.
We keep praying for his legs and feet. Matt and I watch every movement with eagle eyes. Every now and again he has new movement in his lower extremeties. Those moments are so exciting!! There are still great things ahead.
Sometimes there are tough moments when our hearts just ache. However, we just remind ourselves that there is so much to be joyful and thankful for. He's babbling and cooing like crazy. He just picked up his toy for the first time the other day! When we look at him, he's not just a kid with spina bifida. He's Josh. Amazing, perfect, sweet little Josh.
