Painting the Town with Joey

 It has been a while since I have had a chance to post about Joey, but we have been busy and inundated with life! With the arrival of Chandler into our lives, life goes full pace. As a mom, and one who works, it's hard to keep up with myself and all of the kids-that it literally seems like every second counts these days!  This weekend was very special to us. When Claire comes home from college for break, it is sacred to us, so we celebrate with a lot of food and relish in each other's company.  The minute that girl came home, she stepped into the shoes of what I lovingly joke and call her as our "au pair" or "live in nanny."  :) We had a moment where Chandler was sick, Daniel was sick, and we had no nursing, so yours truly pulled 60 hours of "mom nursing" Joey, while they were in quarantine. We were so relieved when Claire came home, because she was then able to focus on Chandler so we could work on everyone else's health.  Since then, my family has recovered, and Joey is still building his lung strength back from catching rhinovirus in a 3 month span and being hospitalized from the virus.  Chandler started preschool this fall, and was constantly sick-daily, weekly, and in between. We spent a lot of time at his pediatrician's office, he had back to back ear infections and a constant runny nose.  He would then come home and pass everything on to Joey. We were tired of being ill, and seeing Chandler and Joey ill, that we decided to take a hiatus from preschool during the winter months, so everyone could recover and live life again. Once we made that step, everyone stopped getting sick and we have had had a moment to catch our breaths.  This is a side note here, but by the grace of God, I have not caught anything. This is a miracle, but there is a ton of covid, flu, and RSV floating around in the masses. I have had to stay healthy so that I can take care of all my small and big children!

Some new things today-We saw Joey laughing and responding to Daniel's kisses. These moments are very far and few between since Joey has been taking his seizure meds, so we cherish those smiles and interactions.  Joey has also been working with the toby dynavox-eye gaze device that his new speech therapist advocated for him to have. This device allows him to communicate with his eyes, and he is also able to play games on the device. It's exciting for me to see that he is able to experience cause and effect by playing games on this device, or even having a form of communication with others.

This weekend was very special, since this is the last weekend we had with Claire before she heads back to college to start the spring semester.  We celebrated by having a special dinner at Butcher and Bee in East Nashville, and this afternoon, we took the whole crew to the Adventure Science Center. I was tickled to watch Joey and Chandler taking in the movie in the Planetarium.  Chandler was so excited to have so many play options in the museum, and Joey was excited to see new things other than his room. Both of those boys really enjoy getting out to explore the town. We even had dinner at Mi Kitchen in Franklin. Chandler was particular cute with Joey beause he loves to hug on him and at dinner he asked for a napkin so he could wipe Joey's mouth. I love watching the sibling love! Joey stayed up the whole duration of the outing. I'm convinced that the kid will stay up if he is engaged and entertained, but if he is at home and bored, he will sleep the whole day away. 

 It was really nice to be able to do all these things-a museum and dinner with all of the kiddos.  When you live life with a medically complex child who comes with a lot of equipment, we do not take these outings for granted.  We appreciate that we have the energy to venture out and that our child is healthy enough that day to experience life in the outside world. Some days are more difficult than others, but when we can make it out to do what some would consider normal, simple activities, we consider these outings as milestones.  Today was a really nice day!