We knew change was coming, but boy did it come. It feels like we have been running in circles these past few weeks trying to get back on a routine. Hopefully in another week or two we will have things running a lot smoother.
We have a new night nurse that recently started. This post is being written at 3AM as I am training her this week. It usually takes us a good week before we feel like we can go to bed, and a good month (or 3) before we feel like we can leave the house with a new nurse. I am exhausted from being up all night and then sleeping 3-4 hours to get up and still try to help with Casey’s day stuff. I am hopeful that this nurse will stick around a while and maybe I can back to regular sleep soon.
Casey started school. She missed her first few week. One day the teacher came out and she and I talked some about schedules, goals, etc. but Casey was not up for even meeting her that day. The second attempt that week went even worse so we told her not to even come. This week went a lot better. Casey did 2 out of 3 of her days. She seems to like her new teacher. The teacher is soft spoken, which is a good thing with Casey. She told us she loves arts & crafts and anything involving glitter. I think she and Casey will get along just fine. We had to cancel today because Casey was having seizures and the medicine we give her to stop the seizures pretty much wipes her out for the day. Hopefully next week will go well.
We are still transitioning from doing out-patient physical therapy at the hospital to doing physical, occupational and speech therapy at home. The PT was supposed to come out today, but we had to cancel her just like school. She will be here Monday instead. The ST came out to meet Casey and seemed really good. The OT called, and I called her back, but I never heard back from her again. I will try to find out what is going on with OT next week. I know it’s hard to start a new schedule when school is starting. Everyone is shuffling things around. Hopefully next week we can get things moving with therapies so we can start working on a good schedule for Casey. We are going to work on self soothing goals, and calming techniques. I really hope that with help from therapy we can get more stretching and relaxation tools to help when Casey is having a rough day.
Casey is getting a therapy swing. We are VERY excited about this. We should get it this week, and as long as Tim can find time to install it, she should be swinging in no time. She loves to swing. Between the swing (that will be going on the patio) and the pool, she is never going to want to come back inside.
Dance started back up this week. Casey was thrilled to see her friends. About half of the class is back, but not everyone. There were some new kids in class and I am sure Casey will become great friends with them in no time. When we were getting her dressed I asked if she wanted to wear pants and she ignored me (her way of saying no). I offer shorts, again to be ignored. I told her she had to wear something or we could not leave. I offered both again and still got no response. I then offered a tutu and got a very big response. She knew she was going to dance and was just waiting for me to offer the proper attire. She of course looked beautiful
We had a few routing doctor appointments this week. Casey saw her Ortho on Wednesday. She has been seeing him every six months for years. In addition to all of her dislocations and contractures they like to keep an eye on her spine. Casey does technically have scoliosis, but it is pretty stable so they just watch it at this point. The doctor was pretty happy with how Casey is doing- so happy in fact that we do not have to go back for a full year this time. Of course, we can call if we need to go in sooner. I was worried about her elbows looking worse. He said they are worse, but that they are not causing her pain and there is nothing that can really be done about it. He referred to her elbows (as well as all of her other dislocations) as the Casey conundrum. We corrected him and told him we call them Caseyisms. He liked out term better. Since she is so stiff, she is going to continue to cause dislocations and contractures. Even if he did surgery to fix them, they would likely still go back in time. We have ZERO interest in putting her through any surgery that is not necessary and he agrees that surgery is not a good choice for Casey. He also warned us that as she gets bigger, breaks are going to likely be something we will see more and more. He told us to just call when we suspect a break to avoid the ER. If we can prevent breaks, and all other ortho related issues, we will just follow up again next year.
Casey had her GI appointment this week as well. She sees GI every 3 months. She still has stomach bleeding issues, so they want to keep an eye on her, run labs, and make sure that it does not become something worse. Kind of like ortho, GI is another area that there is not much we can do. They could do exploratory surgery to “try” and figure out what is going on. They may be able to find something, and that something may be able to be repaired, but the surgery would take a huge toll on Casey and they don’t think that anything they would find and possibly repair would be worth the risk of surgery. We agree completely. We don’t like the GI bleeding, but we have learned to manage it. The doctor added Iron back into Casey’s daily routine. She doesn’t need it now, but he wants to be sure that she doesn’t get to a point like we saw last November where she dropped quickly and needed to check in to the hospital and get a unit of blood. We hope to avoid doing that this year- especially during cold and flu season.
Speaking of cold and flu, I should have taken a picture earlier today. Casey is still a big cuddle bug and loves to snuggle with mom and dad. Tim started feeling bad yesterday so I would not let him anywhere near Casey. He was missing his snuggle time (we like our snuggles just as much as Casey) but still feels bad. In order to get some snuggles he had on a face mask and had to scrub in before taking Casey. It was a Kodak moment and I missed it.
Casey is still having a fair number of bad days. We are doing our best to try and get her seizures back under control and more good days for the princess. I really hope that the new therapies will help. We have changed/increased some of her seizure medications this week too. Time will tell if the change is helping.
I’ll try to get some pictures of Casey in school and on her new swing in the next week or 2. Until then, we hope everyone is doing well- and for all the kids going back to school- we hope you all have a fantastic year!