Sorry for the lack of updates, the last few days have felt pretty busy and I didn't get around to an update.

While Morgan initially did really well on oxygen during day and cpap at night, over the weekend he let us know we were again moving too fast and he needed more time to wean respiratory support.  He went back on cpap 24/7 for a few days where we investigated possible causes.  While we didn't get concrete answers yesterday we transitioned him to a nasal cpap mask, which is safer to use on a regular floor or home for him.  We've also been getting him into his chair for longer periods of time and getting into his standing frame for short bursts.  This all helps his lungs too. Today we are doing a few hours at a time without cpap or oxygen and he's doing well.  If all goes well through the night he could be cleared for a regular floor tomorrow.

Our potential time frame for going home might be early next week, if we can also decrease the frequency of his breathing treatments (we will start working on that after we finish our wean off the cpap machine) to a schedule that's manageable at home.  Time frame feels a little less set in stone now, and the longer were here the more I think that doing outpatient physical and occupational therapy might be the way we go (vs intensive inpatient).  Morgan is rightfully sick of the hospital setting, and I think being able to sleep in his own bed, see his beloved dog, and work on motor skills at his pace might be more important than trying to gain them back quickly.

Thank you all again for the continued support, thoughts, and prayers.  We are loving all the letters and packages we've gotten, as well as the meals, gift cards, and financial support.  We are so grateful for each and every one of you, near and far.

Enjoy this photo of Morgan from the weekend (before he went back on cpap).  His smiles and attitude are coming out more lately, which shows me he's starting to feel more like himself.