Updates

Casey is still taking Flounder with her (and Elly) everywhere she goes. I am not sure if it is because he is yellow, a fish, or from her wish. What ever it is, she loves him.

We have been pretty busy around here. Casey’s ear is still not recovered so we have weekly appointments to have it checked. Some days it looks better, some days worse. Eventually we will get it to heal.

We are trying to get in to see a specialist about long term prevention for stuff like this. We will talk to her about special beds, pillows, etc. She is pretty busy so it looks like it will be out in November for that appointment.

We have had to go back a few times to get Casey’s AFOs adjusted. The right one seems good now, but I think we may need to go in one more time for the left. It’s close, but still a little to tight and pinches her ankle.

Casey has been having a hard time with her teething. She is so drooly and fussy. We have been giving her Tylenol and Orajel around the clock. It helps, but we will be so glad when her teeth finally settle.

This week Casey is going to see a new doctor. They have a speciality clinic and there is a doctor that does Phenol Injections . Phenol is sometimes injected near a nerve in order to temporarily (up to a year) stop it from transmitting impulses. We are going to talk to this specialist to see if he thinks it may help Casey. It is hard to say with Casey if her stiffness is due to short muscles, or neurological misfires. I suspect it is a bit of both. Depending on what he thinks, and what is involved in the procedure, we may look at doing this in the near future.

Casey has routine pulmonary and neuro follow-ups in the next few weeks. We should be just about off of Casey’s old seizure med by her neuro appointment. She is on a new one that seems to be doing the job. So as long as she continues to tolerate the ween she will be done with the other one soon. I am not sure if they will want to do another EEG or anything when she is off. I guess it just depends on how the appointment goes.

We are also dealing with some school stuff now. We are going to have a meeting in the upcoming weeks. Once we get through that meeting I will post more details on the issues and how we are going to deal with it.

That’s about it. We hope everyone is doing well. I will post more later about the phenol options and school.

This entry was posted in Casey.