Latest Updates

On Thursday Casey got to hang out with her nurse all day. They had lots of fun. While they were playing Casey's purple pads showed up for her stander. Tim got them put on pretty quick. It looks so much more Casey now :) Black is just to boring for a kids color.

I had a nice visit with my grandparents on Saturday. We went to lunch and just hung out for a while. It really is great to be back in Texas and visit with them and the rest of my family and friends in the area.

Tim started week 2 of his 2 week vacation today. He hasn't had a chance to relax yet, but he has gotten a lot done. I think he is going to spend most of this week getting ready for his Chicago race coming up next month.

Not a lot going on this week. We have a few follow-ups with most of Casey's doctors over the next month. These are just follow-up visits though, nothing major. I think the only appointment we are waiting on is ENT for Casey's ear tubes.

Ears

Poor Casey is going to have to wait to see her ENT. I called Monday morning to try and get her in this week instead of our previous date next week. I was told that they were going to call me that day already to reschedule, but not for earlier for later. The doctor is going out of town and can't get her in this week or next. We can't get her in until the first week in August. She seems to be a little less fussy today. She has been having good days and bad days. As long as we stay on top of things I think she should be okay to wait.

Since Tim is on vacation this week and next I decided to take advantage of having him around. A friend of mine from grade school recently became a dentist. She has been saying she was going to be one since we were little girls and she went through with it. I needed a dentist in town and was due for a checkup and cleaning. I went in to see her today then afterward we had lunch. It was really nice to see her and catch up. If anyone in the Austin area is in need of a dentist you should give her a call. She did a really good job and has a really nice office. Tell her we sent you and you can get the VIP treatment. Dr. Rydel 2304 Hancock Dr Ste 1

Tim has been enjoying his one on one time with Casey. I am going to let them hang out Saturday afternoon so I can go visit my grandparents. She likes to sing along while he plays 'Guitar Hero'. It's really cute. She has always loved stories. Now she is starting to read to herself. She likes us to prop up one of her books in front of her. She will stare at the page for a little while then tell us when she is ready to change the page.

Not much else to report right now. Casey is doing well with her stander and chair. Hopefully we can get to the pool a few times while Tim is off work.

New Ortho

Last week we went to an orthopedic doctor here in Austin. Happily I am reporting that we really liked him and his team. It will be much easier to go up the street instead of all the way to Houston. Not to mention, with him here he is in the same group as her other doctors and they all work together. Tim was working so Casey went with Laura and I. It was a really long morning, but a good morning.

Casey has been pretty fussy lately. Nights have been pretty tough. During her bath we check her ears really well. There is a lot of wax deep in her ears and it looks like one ear tube may be coming out. I am calling her ENT today to see if we can get in and have it all checked out. I am worried that if the one is coming out it may be hurting her and the source of her fussiness. I know last time the tubes came out she had a really hard time with it. The only bad part is that if it is coming out there is a strong possibility it will have to be redone. That means anesthesia and our first real interaction with the hospital. The 'H" word always makes us nervous.

Tim has a bunch of vacation at work and has gotten into a use it or loose it situation. He has decided to take this week and next off. His to-do list has been growing ever since he mentioned taking time off. I think after the 2 weeks he may be wiped out :P

Casey has been doing really well with her new stander. She wears her shoes in it. Since her 12 hours in the shoes is mostly at night we have been doing stander time in the morning before we take her shoes off. In the morning we get up, do her bolus (medicines and stuff) then depending on the day we may give her an hour or so with food. Today we went to the stander first. She spends a good 15 minutes at 25 degrees. Later this week we will move up to 30-35 degrees and each week will go up a little more. Casey has been doing 2 hours in her Theratog each day too. Then with her chair time, nap time, snuggle time, and play time her day is pretty full.

She is watching her Seasame Street now. I personally like Cookie Monster, but she seems to be more into Elmo. I will post more later after we talk with her ENT. As always we hope everyone is well.

Stander is set

This is the first minute I have had to sit all day. Casey had vision, speech and physical therapy today. We pulled the Theratog back out and she wore it for most of the morning. When PT got here she helped me get the stander all set up. I was way off. I am glad I waited for her. Casey sat in it at about 25^ for about 20 minutes after we got it all configured. That's a really good first day.

Busy Girl

Casey had a busy week last week. On Monday she had a couple of therapies. Tuesday she and I went swimming. On Wednesday she had therapy and then that evening her stander showed up.

On Thursday her nurse was here. Us girls drove loaded up Casey's new chair and headed down to my old company. Casey wanted to show it off and say thanks again. I wish we could go see everyone that contributed and thank you all in person. Please know if we could we would.

I took a couple of pictures while we were there, but like a dummy I somehow deleted them before they got up loaded. I will get some new pictures to load soon. Casey has been doing great in her chair. She still has her moments when she refuses, but she is coming around.

We had hoped to visit the office later in the afternoon, but our plans got a little messed up. Casey's pulmonologist needed a healthy baseline culture. We had to stop by there while we were out. When we called to get the best time we found out that they would be closed that afternoon and that we needed to be there before noon. This meant we ended up visiting the office during lunch. Sadly a bunch of people were out to lunch and a few were sick. We were able to see some folks though. Hopefully we can get back soon when more people will be around.

After we got home Laura tried to help me adjust the stander to fit Casey. We got it close, but I am not sure exactly where her hips and shoulders should be. Casey's PT will be here tomorrow and I am sure she can help me get it finished up. Once it is all set we will get some picture of Casey in it. It may change a little soon (hopefully). We ordered the pads in purple to match a bunch of her other equipment. When it came we found they sent us black instead. They should call back soon to let us know what they can do to fix it. We hope they will just send us the correct pads and we can send back the black ones.

Tim and I were able to go to dinner Thursday night. I was a nice date night. We don't get to go out every week while the nurse is here. Sometimes we are just busy. It is really nice to have the option though.

Over the weekend I have been able to get some work done on my book. I got started and it just seem to come to me. I have tried to get started a few times before and it just didn't seem to work. I think I have finally figured out the layout and things are moving now. I decided to start at the beginning. I was working on it some earlier today and it was crazy. It has been over 2 years, and just remember some of the things we went through, the feelings we had, the things doctors were telling us, it made me very emotional. I had to take a little break in the middle to keep myself from getting all choked up. I did not expect it to hit me like that this much later. Oh well, hopefully that makes for a good read.

I will get some pictures and post them in the next few days. As always we hope everyone is doing well.

Just Stuff

No real news to post right now. We had a nice quiet 4th at home. Casey is still having a little trouble with teething. There are so many coming in right now that it is causing a lot of extra secretions. With all the secretions we have had to suction a lot. Because of all of the suctioning we have held off on the Farrell feeding system. We will let the teething pain subside and start up again later.

Casey has been adjusting to her chair. She fell asleep in it last week and stayed in it for nearly 2 hours. On average she is staying in it 45-60 minutes a day right now. The other day she wanted nothing to do with it. We tried 3 different times and each time we had to pull her out in less than 5 minutes.

Casey was in a really good mood today so we were able to get her hair done and put her in her chair before her vision therapy started. Since she was sitting up she was even able to wear her glasses. She looks so cute. She looks like a big girl now, she is growing up way too fast.

We are planning a trip to the pool tomorrow morning. Tuesdays are her day off (no therapies) so we try to do fun stuff that we don't always have time for. Laura (her nurse) comes on Thursday this week. As long as Casey is doing well and nothing comes up we are planning to take Casey to my old company to show everyone her new chair. I am sure she will love the attention there. She will hate the drive, but she always hates the drive.

We meet an Austin Ortho next week. We are hoping to find one local that we like so we don't have to drive back to Houston for all of her Ortho needs. The one we see next week is pretty highly recommended. I really hope he works out. I heard that he actually moved here from New Orleans after Katrina hit.

We finally got shipping notification today. Casey's stander will be here on Friday. I can't wait to start getting her used to that and eventually putting some weight on her feet. I really think it is going to help a lot.

Tim is trying to get ready for the Chicago Tri coming up at the end of August. Between work and working out he is keeping pretty busy. I have been using the time with Laura here to get a lot done. I think I am pretty much caught up on my chores. I hope to start working on my book this week while she is here.

I think that is about it for updates from the Barnes Family. As always we hope everyone is well. I will post more next week after we meet the new Ortho. We will post pics of the stander too.