Friday, January 21, 2011

On a Roll

Wow, we have had 2 great doctor appointments in a row. I posted last time about pulmonary going so well. Last week Casey had an ENT appointment. Usually the ENT has to vacuum Casey's left ear to clean out the cholesteoma. This is never fun for any of us. It has to be done to keep the ear healthy and prevent a full ear reconstructive surgery. This time we went in expecting the usual. Instead the doctor took a peek and said it all looks great. I don't know if Casey or the doctor was happier.

We had a rough weekend. Casey was not feeling well. She started to get a little sick Saturday. She seemed so miserable. Around Wednesday she seemed to be done with fevers. Casey was still fussy and not happy though. Yesterday afternoon she finally started to perk up. She went right to be last night and we thought for sure that with a good night's sleep she would be all better today.

The good night's sleep did not happen. Around 4:am Casey was up. I was up a little before that as well. It dropped into the 20's last night (very cold for this area). We had to run the heater. We did not have it set high at all. However, it ran enough to make the air really dry. I was uncomfortable myself. I was not very surprised when I heard Casey up. She is very hot natured like me. It may have been a combination of the dry air and remnants of her cold. What ever it was, Casey did not get a good night's sleep.

She started the morning off a little rocky, but I think she is feeling MUCH better now. She has been talking and playing some. Her heart rate is back down too. We plan to have a quiet weekend. I expect she will be able to get back to her routine by Monday. Tim grabbed a humidifier over lunch. I think that should help too.

I think we finally found a nurse. We have had Tuesday & Thursday covered for a little while. Starting today we have a nurse that seems to be a good fit for Monday, Wednesday and Friday. I think Casey likes her. If things continue to go well, then I think we are done looking for a day nurse.

I think that is about it for now. We hope everyone is doing well.

Monday, January 10, 2011

Back to Usual

The holidays are over and we have been busy getting back on schedule. Casey had a pulmonary appointment last week. She did good. This was one of our better pulmonary appointments. I don't know why, but she usually seems to get worked up right as the doctor comes in to see her. Then I look like a crazy person trying to convince him that she usually breaths better and doesn't always sound that bad. This appointment is the first I can remember with him that Casey stayed calm. He seemed happy with how she is doing. No changes from him for now.

This week Casey has to get her earls cleaned/checked again. She hates that part. Thankfully it is quick then she is done for a couple months. It is still better than the alternative (ear reconstructive surgery). All of Casey's therapies have started back up too.

Her PT at Dell broke her arm ice skating over the holiday. The past couple of sessions with have been with another therapist. The cast came off last week just after we left. This week we have some other stuff going on, but Casey will be back with her starting next. Casey always does better if she knows/trusts the therapist.

All of Casey's school therapies have started back now as well. Tim and I have a meeting coming up soon to talk about the steps taken since mediation and see what is next.

We got some really exciting news this weekend. One of Casey's favorite nurses took another job a while back. She has come by to visit from time to time, but has not been able to work with Casey since her license expired. She sent us a message saying she is legal again. She is going to do some respite. I don't know how often, but I know Casey will be thrilled. It's great for Tim and I too. It makes it so much easier to leave the house when we know that Casey is safe and happy with her respite nurses. I don't know how we have gotten so lucky. We have 4 wonderful respite nurses now. They all have other full time jobs. Between them we are able to get out of the house almost weekly :)

Casey has a great night nurse. She works 5 nights a week. We hope that they can find someone to cover the other 2 nights sometime soon. We are still looking for a primary day nurse too. We have one day nurse that can do 2 days a week. We really like her, but we need a full time person. We have another that has been picking up 1 day. She is in school and as of 1/19 she is no longer available. I know we will find one eventually. It is just taking a while.

I think that is about it for now. As always, we hope everyone is doing well.

Saturday, January 01, 2011

Happy New Year

2011! Wow, how did that happen so fast?! We hope that everyone had a nice Holiday season this year. We had a very nice time. The few weeks before Christmas, Casey had a couple visits from some old friends of hers. One of her previous teachers came by for a little bit one evening. Another day one of her previous nurses came by with her husband. Casey was excited to see them all.

Casey has a lot of teeth coming in right now. I was a little worried that one looked bad, maybe even infected. Rather than waiting to see if it got worse over Christmas weekend we went ahead and took her in to see her dentist. Casey LOVES going to her dentist. Luckily everything checked out. It is just swollen from the tooth trying to break through.

Emily (Casey's respite nurse/BFF) came to play with Casey some so that Tim and I could finish up all of our holiday shopping and errands. They call it their slumber party when Emily comes over and puts Casey to bed while we are out. They always have a good time.

Over Christmas weekend my mom, brother and John stayed with us. The rest of the family joined us Christmas day for dinner and gifts. It was a really nice time. Casey was very good all weekend. She was quiet, but good. After everyone left on Sunday she got lots of attention to make up for a busy house. That seemed to be what she wanted/needed.

This past week was pretty quiet. We have been putting holiday decorations away and cleaning house. A friend of mine came over with her 2 little girls for a visit. I wish I had grabbed the camera. Casey had a tea party for them when they arrived. Then they made her some princess chalk murals on the back porch. Casey loved the artwork. She has been very into all things "Tangled" lately. One of her friends drew Rapunzel just for Casey. It was all very sweet and so cute.

This year was the first year that we let Casey stay up on New Year's. Routine seems to help her manage her days, so bedtime is usually pretty standard. We asked if she wanted to stay up and she was very excited about the idea. She fell asleep for a little bit, but she woke up around 11:30 and lasted past 12. After we all toasted in the new year, it was straight to bed.

2010 was a full year. We got off to a rough start with Casey being so sick. By April she was doing so much better. She was able to go to the movies with family and friends, thanks to Make-A-Wish, US Money Reserve and KVUE. She was able to meet an elephant in person, and even touch it, thanks to my mom, John and the wonderful staff at Houston Zoo. There were many friends and family that went out of their way to come visit us this year. We have even managed to meet some new friends. All in all, it was a great year. We are looking forward to a wonderful 2011. We hope that 2011 is splendid for all of you as well. Happy New Year!