It's a chilly morning and Elias is asleep, cute as a button. I just took over for the night nurse and have a few moments until the next round of medicines, or Elias awakens...which ever comes first.
Things here are going as well as can be expected. We are getting use to the intrusion of having someone in our house to help care for Elias. We had 24 hour care the first few days and have 16 hours of care until Wednesday. After that we are on our own except for a night nurse from 10p-8a so that we can get some much needed sleep. Rusty, now sleeps through the night so in turn we actually get some sleep. Elias is in a pretty good sleeping schedule right now. Up around 6 am awake until about 8 or 9 am sleeps until about 1 PM, then we play for a while in the swing or dancing around the house. Usually by 6-7 PM he is ready for another nap and has been sleeping until 1030 or 11 PM. Thankfully, he quickly returns to sleep by 1 am and sleeps through the night, mostly.
It has been a joy having him home. Elias is now awake, and after a slightly stressful beginning to the morning, he is now playing, actually trying to hold his Donald Duck. He seems happy for the moment, but I'm sure he will bore easy with that and ready to move on. It is great to be able to pick him up anytime we want, and see that smiling face. We have two doctor appointments. today. First with Pulmonology and second with GI. We are a little concerned about Elias humidity compressor, there is no way to regulate the temperature of the mist and it is always cold. We are not able to get accurate temperatures because of this. Hopefully, they will have a solution for us. We also have noticed an increase in his output, particularly his urine. His diapers are weighing much more since being home. They did just change his formula mixed with breast milk a few days before discharge, so we think that might be it. It is probably alright, but for once we can worry about something small and almost "normal" and for that we can be thankful.
Elias is starting to get fussy, so here I must end. Will try to update and get some more photos up later, when I have some assistance around :)
See ya real soon!!