Latest Updates

It has been pretty crazy around here. We are in between nurses still. With the holiday this week the agency has a few nurses they want to meet but scheduling it is a problem. Hopefully next week if I can meet them one will turn out to be who we need.

One of the hardest things I have to do with Casey is traveling. Even something as simple as driving down the street for a doctors appointment can be a real ordeal. If I am on my own I have to be sure that there are places to pull over the entire route. Often, I have to pull over many times between home and our destination to suction and tend to Casey. This is one of the main reasons we finally ended up saying we need a nurse. In LA there were back roads everywhere. Traveling took forever, but I could get just about anywhere with Casey on my own. In Austin even though the distance between points may be less there are many locations in town that require using major roads and/or freeways. I can't pull over safely on those roads so they are just not an option without someone else going with. Most of Casey's doctors are in a location I can get to now, but when we first got here about half of them were out of my safe zone.

Last week Casey had an appointment with her Ortho. I had not driven alone with her in a while. I was really nervous. The day before her appointment she was so fussy and a handful at home. I was just dreading putting her in the car. She must have known how badly I needed her to be good. She was a little angel. I only had to pull over once each direction. Then at the doctor she hung out in her chair most of the time. We ended up there about 2 hours. The doctor got backed up and we had to wait a while. Casey was so good the whole time. Even when the doctor came in and started messing with her legs and feet she just hung out. I was so proud of her. The doctor did not do much this trip. We go back in a few months and he wants to get some spine xrays on that visit. All kids like Casey have trunk issues and often times it leads to spine problems. She isn't showing signs yet, but this is an area you really want to keep an eye on and prevent or at least slow down as much as possible.

Tim is getting ready to go back to India for a little more than a week. With his trip coming up he has been swamped getting stuff ready. It's going to be a little difficult with out a nurse around, but family and friends are coming by to help out. On Tuesday Casey's previous nurse that she loves is coming to play for a little bit. I am sure Casey will be excited to see her and that they will have a good time.

Luckily Casey does not have any more appointments in the next few weeks. Hopefully we will find a new nurse in the coming week or 2. Other than that we are just getting ready for Tim's trip and Christmas. This will be Casey's first Christmas with family around. I think she will have a good time. I will post updates on our search for a nurse as I get details to post. As always, we hope everyone is well.

Tube Free, For Real

We have a home otoscope that we use to keep an eye on Casey's eyes. A few months back we could no longer see her left ear tube at all so we figured it fell out. Shortly after that she got a small ear infection and we figured that just confirmed our original thought. About 1 month ago we took Casey to the ENT who removed her right tube and said he did not see the left one either so it must have fallen out. This afternoon I was sitting on the couch and noticed some wax on Casey's left ear so I wiped it off with a tissue. Right afterward I noticed something sitting on her ear where the wax was. It was her left tube. I have no idea where she has been hiding it, but she is really ear tube free now.

Casey is doing pretty good on the new medicine. She has been sleeping so much better. We are still working on the dose so she is a little less drowsy in the morning. Once we get the right balance I think she will be much happier.

No prospects for a new nurse yet. Hopefully sometime soon we will get some candidates. We will keep you all posted.

Stuff

I keep putting off posting because I want to post with a new pic, but we have not had the camera handy while Casey is in a photo mood and when we do have it she is not interested in posing at all. I will hopefully get a new pic soon and will just post it on its own rather than not posting at all. Lost of stuff to post.

We have decided to find a different nurse for Casey. We had Vicky come in for a couple of weeks/shifts. After a while we decided that we think we would be better getting someone with more hands on experience with special needs kids and the types of equipment Casey uses. Vicky was really nice, but we were not looking for just a nice person, we need a nice person with a very specific skill set. The agency we use to get nurses is really short handed right now so I am not sure how long it will be before we get a replacement. For now it is back to just us.

Casey has been doing some crazy stuff. About 3 weeks ago out of no where Casey started waking up at 12:AM on the dot. She would start out fussy and within 30 minutes go from fussy to full out screaming. I would pick her up and take her to the other room and she would stop screaming and go back fussing. We tried everything to calm her down. Every kind of medicine, positioning, cool her off, heat her up, add light, darken, make it quiet, make it louder, keep her up all day and wear her out, let her sleep, everything. No matter what we tried nothing helped. She would fuss until 4:AM then like nothing happened she would go back to sleep. It was so weird, and you could set you clock by it. After 2 weeks of ZERO sleep we had an appointment with her nuerologist. I told the doctor all about it and she wanted us to try Melatonin. We tried this for a few days and it did not help at all. I called the doctor's office back and they ended up calling in a new medicine. Neurontin; it's for seizures and neuropathic pain. We have used this for the past couple of nights. It works really well. Casey gets to sleep between 8 and 9 and she sleeps through the night. She still gets junky and needs suctioning, but she sleeps through the suctioning. We may have to work on the dose some to get her a little more alert in the morning, but it is really nice to get her to sleep through the night.

Casey went in to get her flu shot this week. It was nice, the office was ready for us. They even had a little pile of sheets folded up for us to use to prop Casey up. We were in and out in less than 30 minutes.

We are looking forward to Thanksgiving. Hard to imagine it is already right around the corner. We are planning on spending the Holiday with my family at my grandparents house. I will get pictures up soon, I promise. Until then, as always, we hope everyone is well.