by It’s been a few days since we’ve posted an update. And really, that’s because there hasn’t been much to report, which is a good thing!!
They are still adjusting AJs ventilator settings, he does ok with a little less support, but breathes too quickly for everyone’s liking when he gets excited. We don’t know yet what will be next for his ventilator, but the discussions and adjustments will continue for now.
Note the sign, he likes to pick up his respiratory rate when he gets excited, but the paci calms him back down.
Up until today, AJ was continuously fed via his gtube with a pump. Today they started trying to group some of those feeds together a little more. That should help get him hopefully on to a more normal eating schedule long term, so he wouldn’t need to be hooked up to the pump constantly. It will also allow him to feel hungry and ultimately will lead to trying to see if he is willing to take food via his mouth. It’s a ways out yet, but it’s steps in the right direction.
Over the weekend we stayed in the Ronald McDonald house in Iowa City. We even managed to all get dressed and ready to get some photos taken. I do have to say that Mr AJ definitely cleans up well. 😉
Brandy and Brandon stopped by with their family tonight with some gifts that some various friends had brought to her and chipped together to get for us, and we received an adorable handmade sweater and blanket in the mail today from someone we don’t yet know, but has been praying for us. It’s all so very overwhelming at times, but in the best of ways. The news is so wrought with crap and darkness, and everyday someone reminds us of how good people and the world are overall. It’s definitely very much appreciated. The love and support from everyone has been amazing. I don’t think I can say that enough. None of this is easy, but knowing that we have others in our corner to support us, pray for us, and lean on in times of need makes all the difference.
Aaron, Averie and I are working on trying to figure out what our new schedule is – what makes the most sense in terms of travel and staying overnight in iowa city, etc. we are chipping away at it. Still a lot of room for improvement though. Primary lesson learned last night? Don’t stay at the hospital so late. Averie and I both slept in this morning and she was a little late to school. Aaron did get some daddy/son bonding time in today though, and he even managed to do a trach change – which I haven’t been brave enough to try yet. I’ll get my turn on Thursday, I watched last week and am working on getting brave!
There’s still such a long road ahead, but it’s nice to be at a point where we can really just kick back and actually finally really get to know our newest member of the family as he is starting to let his personality shine through. So far he really reminds me a lot of Averie and her carefree, easy going attitude – except when he loses his pacifier. He has a temper in those moments!
Things may not be “normal” by everyone else’s definition, but we are working to find our own version of normal in all of this, as best we can anyway!
