Every 6 months Casey has to see ALL of her doctors. She sees some every 2, 3 or even 1 month, but without fail at that 6 month point she is due to see them all. I somehow managed to schedule ALL of her 6 month appointments starting last week going through the 1st week in September. I had them scheduled 6 months ago- before we started to plan a move or knew we would be short handed with nursing. Part of me thought maybe I should reschedule until we get resettled, but I knew she needed to check in with everyone so we kept them all on the calendar.
It has been CRAZY busy around here. We only have day nurses 2 full days and 1 short day a week right now with 5 nights covered. Trying to schedule everything for Casey in those 2.5 days as well as get the grocery shopping done, clean the house, sleep, etc. has been a challenge. I am planning a really long nap (like an entire day in bed) as soon as we are settled in the new place.
Last week Casey had her follow up with GI and Rehab. These were both expected to be brief appointments, neither were. They were both good, but lots of stuff came out of both.
The good news is that Casey finally gained some weight. She is up to 31.5lbs now. I was so happy to see that number. Casey has been having some retching issues that I was really concerned about. Being that she is feeding into her intestines instead of her tummy, I don’t understand why she would be retching so much. GI wasn’t really sure why either. He did give us a medication to help reduce it. So far I think it is helping some. The side effects are drying her out and/or making her tired. We are not seeing either of those occur, so I may ask to go up a little to see if we can get the retching totally stopped. The small dose we started on has made some improvements. While we were there I did mention that we are still battling the endless bile leak. We have been able to make her skin look better, but the leak is still pretty bad. He did not have much to offer for that (as expected). However, later that evening he called and wanted to see if we would be willing to try a smaller size tube- YES!!!! We took Casey in this morning to get the new tube put in. I was a little worried it would be too tight, but it seems to fit well. We will try it over the next few days and see how it goes. I am very hopeful that we will have a big difference in leakage.
Rehab was a little worried about Casey’s thumbs getting more retracted and when I complained about some odor issues with her armpits she said that Casey’s shoulders were rolled in a way that did not allow much air through. She suggested we do Botox to get both of these areas open more. We have tried Botox in her thumbs, and this is actually the only place we have ever seen it work so I was all in favor of doing her thumbs again. We have never tried her shoulders before, so I guess we will see. Her arms, legs and salivary glands never showed any improvement with Botox. She is really contracted in her arms and legs though, and her salivary glands are a bit of a mystery to begin with. The doctor seemed to think there is a good chance we will see some benefit from the shoulders. It would be great if it can help with her BO issues. She also set us up to get new thumb splints made. Casey had some hard shell hand splints that we never use since they are hard on her skin and some neoprene splints that don’t do much. She wants us to get neoprene style with a reinforced thumb. We have an appointment next week to get the splints made. We went back in to see her this morning after getting the new feeding tube and had the Botox injections done. Hopefully we will see the Botox kick in over the weekend. As of right now, I have a very tired and worn out little girl asleep on the couch. She had a hard morning.
We see ENT and Pulmonary next week and then Ortho the week after. These are all standard follow ups too.
We had a new night nurse come by last night to meet us. She will start next week. It usually takes 2-3 shifts before I am able to sleep while they are here (and for us to know if they are a good fit). I hope that it works out- I need to sleep!
We talked with Casey’s new school district yesterday. We are going to give home bound school another try. I have heard good things about the new district. We should have a meeting to set up the schedule and services right after we move in, and then start services right away. We will be doing OT, PT, Speech and Vision as well as education.
Casey starts dance again right after we move too. The new house is really close to the dance studio. Casey will be so excited to be back with her dancing friends.
Well, that’s about it for now. Back to packing!