Casey’s room is all setup. She loves it. When we take her to bed at night she is so happy to be in her fairy room. This morning her nurse had to drag her out of bed at 8 (that’s really late for Casey). She has little fairy touches all over the room along with some of her favorite things. She picked fairy ballerinas for the bedding and fairies on the wall. Then she has a bunch of Tinkerbell things that she has had for a while on her shelf and around the room. She proudly has her dance trophy on display. She was so angry when we packed it to move. When we unpacked it and I showed it to her she was very excited to see it again. She loves to see her name so Tim hung her C-A-S-E-Y letters where she can see them from bed. Then her nurses have their little area next to her and Al (the fish- I think this is Al III). On the other side of her little entry area is her own bathroom. We took her to Bed Bath & Beyond one day and let her pick out her own bathroom stuff. We showed her a bunch of different sets and she was not impressed. When we showed her the Gerbera Daisy set she lit up. She knew what she wanted and we finally found it for her. We are going to have to modify the bathroom some to make it fully accessible so we will show pictures of that area later. For now we’ll share some pictures of her fairy bedroom.
I got all of Casey’s paperwork in to her new school and had a meeting with them yesterday. We went over all of Casey’s needs and what she likes, doesn’t like, etc. The teacher and OT came out this morning. I guess technically today is Casey’s first day of 2nd grade. She seems to be cooperating so far. They brought toys so I am sure that helps. I am very optimistic that she will do well with school (at home) this year.
Dance started a couple of weeks ago. She was having a rough day on the first day back, and we had a scheduling conflict last week. So she starts dance today. The first day of school and dance on the same day! I think she will be wiped out by the end of the day today. She will be so excited to see her little friends at dance. She loves to be around her friends.
We went from a 1.5 feeding tube to a 1.0 a few weeks ago. The 1.5 was too long and Casey just leaked non-stop with that one. The 1.0 was much better for leaking, but the site looked a little off. We took her in to get it checked out and they decided to go up to a 1.2 in case the 1.0 was just a little bit too snug. The 1.2 came yesterday and we switched it out before taking her to bed. It immediately looked much better. 1.2 is the only size between 1.0 and 1.5 so I hope that it does the trick. We will be able to tell for sure in a few days.
Casey signed up to be part of a new group. It’s called I Run 4. They pair runners (usually healthy adults) with children (and some adults) with special needs. The idea is that the runner will be motivated by their “buddy” and then the buddy can root them on and cheer for them “virtually”. They have a lot of runners and were short on buddies so I decided to sign Casey up. She got paired with a lady that lives in Virgina. She posts a sweet little message to Casey every day about her run, bike, etc and that she thought of Casey while she was out there. She ran a 9-11 race in DC and sent Casey a really cool package. She was able to get an extra medal and bracelet for Casey from the race. She included an elephant book, a very sweet card, some hair ties and a very Casey very blingy pink watch. Casey loves to get mail and her eyes got bigger and bigger with each thing that we pulled out of that package.
Casey had a few appointments last week. Ortho did not make any changes to her plan and said she looks good. ENT had to clean out her ear (she HATES that part) and started her on a new drop. I think her infection is finally clearing up. She has a couple more appointments next week. As long as nothing new pops up, hopefully we can have a few weeks doctor free at that point.
I think that is about it for now- I think that is probably enough. Here are some photos. Enjoy 🙂
|First Day of 2nd Grade|
|Nurse’s Area w/Al|
|Casey’s Bed & Fairy Art|
|Casey’s shelf w/her trophy
|Casey’s watch & 9-11 medal|