Do things get worse before they get better? Possibly...
We have been documenting every cluster that Charlie has every day and she seemed to be having them every 30-40 minutes while she would be awake. Since starting the steroid she seems to have her clusters every 15-20 minutes now. Extremely frustrating since we were hoping to see an IMPROVEMENT in things. We called Dr. White (CHKD neuro) and emailed Dr. Kossoff (Hopkins neuro) and they decided to go ahead and increase her dose of the steroid today instead of waiting until Thursday to do so. Dr. White said it's not completely uncommon to see things get a bit worse before they start to get better so please say lots of prayers that this is the case with Charlie Claire! Dr. White said she is just being a tad stubborn, I wonder who she gets that from?!! Her fussiness has seemed to kick in :( She is either super duper happy or super duper unhappy. We have an appointment with Dr. White on Thursday just to check her out and go over our game plan with meds.
On a lighter note: Charlie Claire's physical therapist came today! I was super nervous about this appointment since the last month has been touch and go with her exercise sessions. Her clusters make it very hard to do her exercises and sometimes following big clusters she falls asleep. Even with all that going on she is doing almost everything a normal 3 1/2 month old baby should be doing!! :) The only thing we are having an issue with is her vision - she isn't tracking objects yet or reaching for her toys but she is getting much better at focusing on people and objects. Vision services is going to start coming out and working with Charlie but the therapist today said we might need see a big difference until after her surgery.
Ok, Jackson is upstairs sleeping and C is sleeping on Grammy TC so Mama Bear is off to bed!
No comments:
Post a Comment