It is still kind of mind boggling when we think of where we were this time last year. If we look at our day today, it *almost* felt normal. We still need a third grown-up in the house to help keep things running smoothly, but other than that, we are still moving in the right direction. The biggest news of the week is that we've started the oxygen weaning protocol. For 3 days, he has had 1 hour off oxygen. Tomorrow, we increase to 3 hours off. There are lots of details about when to turn it off, and when he may need it back on again - it's a slow process (about 21 days if all goes well). After the 21 days, hopefully he'll be 'off' for all daytime hours and only need it for sleep. Following that, they send a machine to track him overnight to make sure his heart rate and oxygen levels stay normal, after that, all done. I have made it sound pretty simple, but it's not and realistically I think it will probably be July or August by the time we are free of tubes, probes, and tanks. When his tummy is cooperating, he's a happy guy and is definitely interested in his world. One of the therapists said that there are certain areas that he seems like he's 'on par' with an 8 month old (his corrected age) but some areas (mostly physical) are holding him back. I'm happy with this because the physical stuff can come with time - especially now that we found the new place to go for extra physio.
A huge thank you to all the nice birthday wishes for Ryan (and us!). I'm excited to share them with him one day.
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