Friday, April 30, 2010

Fun Week

We had a great week. We finally took our first family vacation. We have gone away for a night or two here and there over the past 4 years. However all of our previous trips were medical related. This week we took a trip just for fun.

We took Casey to San Antonio after work on Wednesday. We checked in to the hotel and had a nice relaxing night. Then Thursday morning we got up and got ready for a day of fun. We took Casey to Morgan's Wonderland. What a great place!

Casey had a great time. She LOVED the water area. She was able to go to a light show, design her own car, she hung out on the playground with other kids, and she ever rode on a carousel. We were on the dragon. We said hello to the elephant on our way off the ride. Casey's friend, Kennady, met us there with her parents. It was a really fun day for everyone. Casey played so hard she crashed. We will have to plan another day trip out there sometime soon.

The ride home went pretty good. Casey was awake most of the way, but not too fussy. However about 10 minutes before we got to Austin she let us know she was ready to get out of the car. The way down was similar. She slept most of the way there. However, about 10 minutes before our exit she threw up. We had to pull over and clean her up. Her GTube was leaking and making a horrible mess (even worse than usual). When we finally made it to the room we gave Casey her medicine and saw that her tube was still leaking really bad. She was exhausted from a long day and crashed so we just positioned her as well as possible to reduce the leak.

In the morning when we were getting ready Casey's tube came out. Surprise! The balloon had deflated/popped. I am guessing that was when her tummy got sick and made her throw up. Then over night the remaining water in the balloon drained out. Luckily we had our extra gtube and popped it right in. That explained the increased leaks. Her gtube has been doing much better since we changed it.

On Wednesday morning Casey had to go to the ENT. Her regular ear cleaning appointment was due and her ear had been draining a lot. The doctor checked it out and cleaned it really good. It turned out that Casey had a bit of an ear infection. We have been giving her drops for a few days now. We have to give her drops twice a day for a week then once a day for another week. After that we will go back to get another look. I have already noticed a lot less drainage. I think the drops are helping.

Casey has a couple of appointments over the next few weeks. I will try to post again soon. I will also post some birthday pictures when I get them. As always we hope everyone is well.

Sunday, April 25, 2010

Birthday Girl

Casey turned 4 on Friday. I can not believe she is already 4. The years have really flown by. She had a great birthday. On Friday I told her it was her birthday so she could do what she wanted. She took that very literal. She opted to sleep in. When her nurse tried to get her dressed and ready for therapy she threw a little fit. It was as if she was saying "My mom said I could do what I want! Leave me alone!".

On Saturday we had some family come over to do a little birthday party and lunch here at the house. She had some raspberry cheesecake ice cream cake (yummy) and a nice time with her party guests. She has finally gotten big enough to understand presents. She was so excited opening her presents.

After her party we took her to her Make-A-Wish interview. Casey is officially going to be a wish kid. We told them all about what she likes and doesn't like. We talked about her limitations and risks. Then we gave them a few ideas of wishes we think she would enjoy. The volunteers took all of our information. They will do some research and then let us know what and when her wish will happen. I am really excited to see how it goes. I am sure what ever they come up with will be wonderful.

I am waiting for some pictures from my mom. Once I get them I will post pictures of the party and Make-A-Wish. Thank you to everyone for all of the birthday wishes, cards and gifts. She had a really nice birthday and appreciated it all.

Thursday, April 08, 2010

Whats Happening

The bathroom renovation is coming along. We had to wait a few days on the counters to be installed so the crew went home Thursday last week. The counters were installed yesterday. I LOVE them, they are so pretty. Now that they are in the crew can come back and finish up. They will be here on Monday. Today we have a drywall guy coming to texture the walls. Tomorrow and over the weekend I will paint. Tim has finished up all the inlay and back splash. When the guys come back on Monday they will have to do the shower floor, grout and seal everything and attach the fixtures. I am sure they can get all this done in a day maybe a day and half. Then the bathroom is complete!!! I am so excited. Casey's bath chair should be here in about 2 weeks now. We will make do with the non rolling chair until the new one arrives.

Tim and I have been talking about trying night nursing again off and on for a while. Since Casey has been in her room (with us) due to the renovations we figured it was as good of time as any to try it again. Tuesday night we had a nurse come out and work from 10PM to 7AM. I stayed up with her so that I could teach her what to do. Last night we changed her time to 10:30-6:30. She stayed with Casey all night so Tim and I could sleep. It went really well. Casey seems to like stretching out in her own bed. We are going to have a night nurse come Sunday through Thursday nights (work nights). I think I will be so much more productive if I can get some sleep.

We have a new day nurse starting today. She seems to be catching on to suctioning pretty quick. That's awesome! Now we have a lot of nurses. We have a Night nurse, a Monday nurse, a Tuesday & Wednesday nurse, a Thursday nurse, a Friday nurse and 2 respite nurses. 1 of the respite nurses is our Friday nurse too. We have 6 nurses working with Casey now. That is so great. I like having different ones each day. That way when one is sick, on vacation, what ever we only loose a day not a week or more. The respite nurses are not on a schedule. When the respite nurses come they are here for a couple hours so we can go on dates. We just get respite as they have time. Now that we have 2 we are able to get out at least a couple times a month.

Casey had water and OT at Dell on Tuesday. It was a LONG day. We spent the morning in the pool, came home for lunch, then went back for the afternoon. Casey was wiped out.

We have been having some issue with suction machines. Our primary portable has been going out for a while and is very unreliable. Earlier this week I went to use our backup and it was totally dead. It won't charge at all in more. We got it replaced since it is covered by insurance. However the primary one is a nicer one. Since the model we use has been discontinued we have been researching replacements. Hopefully we can find a good one in the next week or so and replace our primary machine too.

Yesterday Casey had a GI appointment. The appointment went okay. Casey has lost a little more weight. The doctor wants us to try and get her more food each day to see if we can get her going in the other direction. She didn't lose a lot, or as quickly as she did with the GJ, but she did lose. The G tube is still so leaky. I have no idea how many calories a day she must lose that way. We will work on it. We have had to do this dance many times before. I am sure we will get her back on track soon.

We don't have any more doctor appointments scheduled until after her birthday. The next few weeks will be therapy and getting ready to turn 4. We are going to have some family over for a small party then head to San Antonio to take Casey to the zoo and Morgan's. We are going to meet Kennady and her family at the park.