Switch

A few days ago Casey's vision teacher brought over a switch. A switch is a tool that helps kids (or adults) that have limited motor function take more control of their environment. There are all kinds of switches. Some are buttons, some are toggles, some work by blinking, or breathing. Pretty much anything you can think of can maneuver some variation of a switch.

Casey has tried buttons before but she did not take to that style. The switch she is trying out now is a toggle switch. The switch plugs into a power unit then you plug in what ever you want the switch to control into the plug on the power unit. We plugged in some of Casey's favorite toys and put the switch in her hand. She picked up on it right away. She is able to turn it on and off like a pro. We are going to try it out for a little while then we will get her one of her own. She really likes when she has control of her toys. It is really great to see her use tools that give her that control. She just amazes me every day.

Casey has been working really hard to use some of her facial muscles more. She is not quite smiling, but she is really twitching the sides of her mouth a lot. I love watching her learn new things. She is just such an awesome little princess.

That's it for now. We hope everyone is well.

Feeling Better

Luckily what ever had Casey feeling bad last week was a quick bug. She was out for a little more than a day then she was back to causing trouble. I hate when she is sick.

Casey has been doing really good with her hands. She is using them more and more every day. The other night I was getting her shoes on for bed (we call her splints shoes). Normally Casey does not have a reflex to things. However, the other night she was very relaxed and every time I touched her feet she would reflex with curling her toes or moving her foot. It was a really big deal. She has gotten really good at picking us her hand and moving it around to explore her toys too. Used to she would leave it where ever you put it. She has a little elephant (of course) that has 6 buttons. She will move hand to the different buttons to get different sounds. It really is exciting to see her using her hands more.

We had Casey's yearly ECI review last week and the start of what I guess will be many meetings to get her transitioned to the school system in a few months. Everything went well. All of her therapist reviewed her progress from last year and were all so impressed/proud of how far she has come. We set some new goals that will move with her to the new therapists. Then of course there was a mountain of paperwork to go through. I still have some to do, but we got a lot done during the meeting.

I spent the past few weeks getting letters from all of Casey's doctors stating the medical necessity for Casey to have a nurse. I am hoping now that we have the letters and I have given copies to the people that need them that we can soon get some additional hours covered each week.

We have still been getting settled into the digs. I love being a home owner. It just feels so great to know we can do what we need to for Casey and for us. We have been doing a lot to get Casey's room all fixed up. I think we are just about done in her room. It is so cute; so girly. We start the next round of doctors visits in February and it runs into March. We will be pretty busy getting all of Casey's doctor visits done. Her Ortho (March) mentioned he wants to do a serious of xrays on her next visit. He wants to check her hips and get a good look at her spine. Those are never fun. I think she is about due for another EEG as well. The EEG's are not hard, they are just long and all the stuff they use to stick the electrodes on her head make a nasty mess. Other than that I am sure we will have to get labs drawn and height and weight and all that good stuff. So anyway, busy few months coming up. I will be sure to post any updates as we get them.

We hope everyone is doing well and staying warm.

Stuff

Not a lot to post today. Casey has her 1 year review with ECI on Thursday. It's hard to imagine but we have already been in Texas that long. We are also working on getting her services ready to go with the school district. At age 3 kids move from ECI programs to school programs. It was the same way in LA. I would have assumed/guessed it was the 5th birthday, but it's the 3rd. We have really good therapists coming to the house for Casey right now. I am a little apprehensive about getting an entirely new team. I really hope the transition goes smooth and that Casey likes the new therapists. The good thing is that we are starting the paperwork this month so I am very optimistic that we will have plenty of time to get everything in place. She gets one therapy through the school now (vision). We really like her vision teacher. If the rest are as good as she is I think we will be okay.

Casey has been working hard at home on stretches and saying yes (her way). She is really doing well with it. She has been hanging out with her new pal Al a lot too. On Friday Casey's friend Laura came over to watch her so Tim and I could go on a date. It was great.

Out of nowhere last night Casey started running a fever. She ran one off and on all night and was really upset. Her fever has been down today but she definitely does not feel well. I hope that tonight is better and that with a good night's sleep she will feel better tomorrow.

That's about it for now. As always, we hope everyone is doing well.

The Brain Project

Back in November Tim saw a story on the Today Show about a little girl with a brain injury. Her father had created a site and was trying to join other brain injured children and their families. He had been faced with a lot of the same issues we deal with. A lot of doctors just don't have enough information to really know what's going on. One of his goals is to try and bring medical records together and public so that they can be shared and the brain and brain injured child can be better researched. After watching this show Tim contacted the website and told them all about Casey. I was just looking to see how their progress is going and saw that Casey is now a "Friend" of Sarah Jane. It's a good site, with good intentions. If anyone has some spare time and wants to check it out its...

www.thebrainproject.org

If you click on "Friends" you can see Casey listed.

Happy 2009

Wow, 2009! I can not believe it is already 2009. Last year flew by. Casey has grown so much in the past year. I was looking at some old pictures and she is just so much bigger. I must say 2009 was a really good year. Casey has been growing a lot. She has established relationships with a new team of doctors that I feel good about. She has a team of therapists that have been doing great stuff. She has nurses that she and I really like. And on top of everything else she has really come a long way developmentally too. She has learned how to say yes (in her own way) make choices, she is using her hands and arms more, she is getting a little bend in her legs, and she can say "Ma" really good with out our help at all. All in all Casey has really done a lot in the past year.

Just before the new year Tim's brother Chuck came to visit for an afternoon. He brought his wife, her mother and her daughter. It was a really nice visit. Casey seemed to enjoy the company and I am pretty sure they were all excited to meet her. It was actually Chuck's birthday while they were here so we had a little cake and celebration for him too. His wife, Claire, has family in the Houston area. Hopefully we get to see them more.

On New Year's Eve we had some friends come over for a quiet evening in. Casey has just recently got to a point where we can take her to bed between 7:30 and 8:00 and she will usually (not always) go to sleep with in 20-30 minutes. We hook her up to monitors for her breathing and heart rate, then of course have a baby monitor as well so we can hear what she is up to. We were able to get her to bed on New Year's and then joined our friends and had some grown-up time. She is really growing up a lot. I think she kind of likes the Independence too.

The ENT appointment went good and bad. The doctor said Casey's ears look good. Still a little negative pressure in her left ear, but nothing serious. In order to see her ear though she had some wax deep in the drum that he had to remove. That was the bad part. They took us back to a special room where she was able to lay down. She seemed pretty comfortable on the table so it started out okay. The doctor was behind her and his nurse was in front. His nurse held her head steady and had Casey's nurse hold her arms down. The doctor had to really get in to get her ear clean. Casey was so upset. She was screaming and crying and trying to get away. It was really awful. I was standing behind her by the doctor and tried to help calm her down by rubbing her back and talking to her, but it did not help at all. She was really screaming. She finally started to chill out and doze off just before we got back to the house. But then of course as soon as I stopped the car she went back to crying. It was just heart breaking. She did finally relax and take a little nap. By the time she woke up she seemed to be over it. Luckily we gave her some Tylenol before we left and some Motrin as soon as we got home. I hope we don't have to do that again. It was no fun for any of us.

Now that we are done with the holidays and getting Casey back on her schedule I am going to look into a few things. I am going to try and up our nursing hours so she can have Thursdays too. Also, on Wednesdays I am going to look into getting Casey into water therapy. She loves to go to the pool and there is a program not far from here with an indoor pool that I am hoping to get her into. I am going to give them a call and see what kind of availability they have and see if she likes it. I will post more on it as I find out more.

I think that is about it. Tim has been busy with work, they have a lot going on right now. Other than that we have just been getting settled in the new place. As always, we hope everyone is doing well.