Casey finished her antibiotic for the MRSA ear infection a week ago Friday. We were very optimistic that when she finished she would go back to her usual happy self. Last Saturday she did really well. She was a little fussy early in the morning, but only for about an hour. After that she was in a great mood. We took her to the CLU Day to Play Music group and she had a lot of fun. She got to meet some new friends, sing songs and dance. After the play group we went with another family (that also has a little girl very similar to Casey) to grab lunch. Casey stayed awake and just enjoyed hanging out at the table. All in all Saturday was great. We saw that as the medicine was done and she was getting back to normal.
Casey had a rough morning, but good afternoon the Wednesday before Father’s Day. We decided to take advantage of her good afternoon and get her out of the house for a little while. She went shopping. She picked out her own present to give Daddy. She really loved Bed Bath and Beyond. They had a fan display with all the fans blowing. I think she could have sat there in the wind all day. She does like it when it’s cool (or cold even).
Sunday (Father’s Day) however, she was back to crying. We spent all day Sunday trying to do anything we could to get her to stop crying. It’s not her usual little uncomfortable cry that comes and goes, this is a very pathetic ongoing cry that kills us. She would take little naps (15-20 minutes) off and on Sunday, but between naps she cried most of the day. She would not let us anywhere near her ear. We thought maybe the infection was still bothering so we called ENT.
Casey’s ENT was out of the office Monday but got us right in on Tuesday. We told him about her crying and how guarded she has been with the ear (or course she didn’t do any of this in the office and made me look like a total idiot). He checked her out and said the infection looks much better. It’s not 100%, but it should not be causing her to cry in pain like that.
Wednesday she spent the entire day throwing up and still crying- so we decided maybe she had a stomach bug. The throwing up stopped that evening and Thursday she was still crying in the morning. She took a good nap and woke up in a much better mood. We took her to water therapy and she had a great time. She was in a great mood for the rest of the day Thursday and Friday.
This morning she was a little fussy (not like she had been) and then after having a hard time with her BM seemed to be calming down. The calm was short lived. She has been crying again all day today. We don’t know what is going on. The last time I remember her doing this horrible cry – uncontrollable/unconsolable – was a few years back. She used to cry like this every night and not sleep. Finally her neurologist started her on a medication for neuropathy pain. That medication was a miracle drug for her. She started sleeping, stopped crying, it was exactly what she needed. A couple years ago they upped her dose but she has been on this dose for a while now. I have been doing some reading and it looks as though MRSA could have caused her neuropathy pain to increase. Or it’s possible she has outgrown the dose. My uncle has to take neuropathic pain medications as well and he has had a horrible time with medications. He finds one that works, then months, to a year or so later his body stops responding to it. It looks like I will be calling Casey’s neuro first thing Monday.
Casey was supposed to go to a friend’s birthday party today. We were all excited about it. It was a pinkilicious party and Casey was going to be all decked out in pink from head to toe. We had to cancel last minute. It seems like we are having to cancel so many things over the past few weeks/months. We have got to get this figured out and resolved soon.
I’ll try to post after talking with the neuro this week. Hopefully we can get something that will get her over what ever it is that’s bugging her. It’s just so hard to know since there are so many things it could be. We hope that everyone is doing well.