We are all still reeling from the clear scans. Conner continues to take things as they come--he's so level-headed! We're very thankful.
We have some disappointing news--Conner's decided to no longer go to Disney World for his Make-A-Wish wish. It was a really hard decision but there was a really good chance he wouldn't have gotten to go at all. Our wish grantor said that MAW will not grant any travel wishes until there is wide-spread use of successful vaccine AND community spread was contained--to think we were only 4 days from leaving in March. With so many uncertainties Conner has decided instead to ask for a fishing boat. He has found his love for fishing and wants to go all the time. The other day he was reading through the Bass Pro Shop (thick) catalog. He's in awe of all the different types of lures, jigs, and baits. So far he's only caught blue gills and a few small large mouths but I can't wait to see him real in his first walleye or northern. One of us will have to hold onto him though because he's so little (despite our attempts at feeding him extra calories he continues to weigh between 66-69lbs). Although the trip to Disney would have been amazing and unforgettable, this will be something tangible he can use for many years to come.
Conner continues to struggle with separation anxiety. Back when he was going to school he had a really hard time letting me go and felt very anxious when i would leave him. He would get red in the face and upset. Eventually, he was able to stay at school, without me in the building, for hours at a time. We've always been there for him, day and night, through the past year and with that he's developed the need to be near us, mainly at night. Our challenge now is getting him in his own room (which is just under our room in the walk-out lower level, ie. basement). It doesn't feel like a basement and it's the largest bedroom in the house! When he first came home from the hospital he slept in the living room on his mattress (so not to wake others) so one of us could stay up with him and adjust feedings. Next, he moved to the floor by our bed. In an attempt to motivate him we painted his room, put up shelves and organized his toys and books. We even put together our fish tank and got him some fish. He liked it at first but still was uneasy going down there. With that, Ed volunteered to sleep on the floor by him for a few nights to get him comfortable again. Well, a few nights turned into months. A couple weeks ago he decided he would rather sleep on the couch than sleep in his room so I invited him in our bed for a night--big mistake, he stayed for 2 weeks. I have to be honest that I didn't mind.
All that being said, tonight is the trial night of Riley sleeping in his lower level bedroom and Conner sleeping in her first floor room. Riley wanted to switch rooms so that she would have more space and Conner seemed happy about it. So far so good. Of course, Riley is telling us that she's getting a bedroom makeover--new fancy wallpaper, new paint, a loft bed, and new carpeting. A girl can dream! We'll see what we can do. It's going to be a lot of work but I'm hopeful everyone will be happy with the new arrangement.
Some people have asked about ways to help so I'm including Conner's Wish List from Amazon. There are physical therapy items to help him stretch his tight muscles, socks, books, and what he wants most... an iPad. LOL. Apparently, he's outgrown his Amazon tablet (they are quite basic though).https://www.amazon.com/hz/wishlist/ls/16SDEA4DHGVBH/ref=nav_wishlist_lists_1?_encoding=UTF8&type=wishlist
Thank you all for your love and support--we feel it with every card, comment, "like" and donation.