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.

This entry was posted in Casey.