Up to 32!!!

Casey has had a pretty good week. She LOVES Valentine's Day. She was so excited to make her Valentine at school on Monday. When I was getting her dressed Tuesday I asked her if she was going to bring it home that day and she was so excited. Her nurses that worked that day brought in Valentines for her too. She was loving it. An entire day devoted to pink, purple and hearts. It was a Casey kind of day for sure.

On Wednesday she had a GI appointment. Nothing major, just a follow-up. She is up to 32 pounds now. That is a pretty big deal. She just hung out while the doctor was checking her out. She did really well. After we got home the weather was a little cruddy and she started to have a hard time, but once she went to be she seemed okay.

Yesterday she got to go swimming and the weather was beautiful. We had a bit of a hard time with her bath, but other than that it was a great day. I won't go into a ton of detail, but her bath chair at home became unavailable about 10 minutes before we had to head to the pool. So, we packed the bath stuff and decided we would just give her a bath at the pool before heading home. Turns out the hand shower at the pool was also unavailable. Ugh!!!! I had to stand between her and the overhead shower while her nurse filled buckets to wash & rinse her off. The shower chair wasn't working right either there. She was not happy. Poor thing just yelled the entire time. She was very happy to be home when we finally got back. It made for a long afternoon.

The weather is nasty outside today. Casey's having a rough day with lots of drainage. Her nurse has been suctioning non-stop today. We took Casey to therapy this morning. She tried to work, but was having such a bad day. She is hanging out watching movies now (refusing to nap). I don't know if it is just a 5 year-old thing or what, but she fights naps with everything she has. She is miserable, grumpy, and in dire need of a nap - but she refuses to take one.

Next week is pretty busy. Lots of annual reviews all somehow landed on the calendar for next week. It will be a long week, but then we will be done for another year. We hope that everyone is doing well. Have a great weekend.

Long Overdue Post

Wow, it's been a while since my last post. The good news is that there is not much to report. It has been a rough winter for Casey. It seems like she gets sick with something, then as soon as we get her over it she gets sick with something else. Luckily none of these have been too serious. It just seems as though it really is always something. I have heard a lot of other parents say the same thing about their kids. I think it must be the weather. We have still not seen winter show up. We have a few days where it is cool enough to turn on the heater (or so Tim says), but then all of a sudden it gets hot again and we have the AC back on. I know this is hard on my respiratory system so I can only imagine what this is doing to Casey.

Casey has missed a lot of school and therapy so far. I think she was out of school most of the time between Halloween and the end of January. She may have gone 2-3 times total during that period. We have finally gotten her back to at least going one of her two days a week. She did not go today. She seems to have some sort of stomach bug that kicked in last week. Sunday was AWFUL!!! We suctioned non-stop and she was just miserable. I thought if she could get a good night's sleep she would be fine today. However, she was up all night. She was so tired this morning and tried to get some sleep. I decided to cancel school. Today wasn't quite as bad as yesterday, but not great either. She just now (11:PM) went to sleep for the night. We'll see how it goes. Hopefully she will be able to go to school in the morning.

It seems like all of my days are running together over the past few months, so I won't even try to catch everyone up on all of the little details since my last post. On Casey's good days she has been enjoying all of her arts and crafts that she got for Christmas, and watching lots of movies. We are trying to plan her birthday for April. It sounds far off, but it will be here before you know it. We can't decide if we are going to do a party, or just something special with family. We have barely started to work out the details.

Tim has been busy with work and his wood shop out in the garage. He is getting really good with the wood tools. I have been working with a couple of groups (local and online) that support the special needs community(s). One group I work with just launched a new website. It is pretty exciting. If you want to check it out (especially any other SN families reading this) it is called Mommies of Miracles (MOM). You may recognize Casey as the "Trivia Tuesday" image on the main page. It's an old picture, but very cute.

That's about it for now. Our night nurse called out tonight, so I am on the night shift and should get back to work. As always, we hope everyone is well.