Yesterday marked 8 months since we came home with Miss Riley. Sometimes it is hard to even remember being inpatient and life without a mini hospital room in our home. And really the last 8 months have flown by! Each day that we have Riley home is truly a blessing.
Tuesday we had a follow up appointment with neurology. Always an appointment that keeps my stomach in knots for hours before we get there. And it's not that I don't like the neurologists, the team we are working with now is wonderful, it's that I always fear being sent across the street.
We were happy to report that Riley had been seizure free for 5 days. I really hate even writing that and I don't dare say that out loud because usually if I do it leads to her having one. We discussed the titration of the ACTH, Riley is doing well as she comes off of it which is good. It will be completed on December 17th.
And then I had to ask the question I was fearing the whole entire day........ Would they clear Riley for her Cochlear Implant surgery?????? I seriously held by breathe waiting for the answer and was happy to hear them say "yeah no problem". Words I was hoping to hear but, you just never know.
Riley had a blood draw this morning. Second attempt as yesterday didn't go so well. Riley is either really fighting it when the needle goes in or her veins are just that hard to get to! Once we get the results from the blood work we'll know what the doctors want to do with her Depakote dose. It's possible that they may lower it a bit. At least we hope.
I also talked to them about the number of meds Riley is on. Riley's sleepiness the past few weeks has been very hard for us to watch. It's not the way we want her to be. It's inevitable that Riley will be on some seizure med for the rest of her life and that it will probably need to be adjusted here and there, we just don't want her over medicated if it's not needed. On the flip side we also don't want her under medicated because seizure activity in any capacity just isn't really good at all. So with time and monitoring I hope we can find a good mixture of meds or 1 that work for Riley. We are happy though that we are working with doctors that believe in trying new things and want to limit the number of meds Riley is on as whole.
We also have a new date for the CI surgery. And it's like someone intervened to calm my fears about having the surgery done so close to Christmas. I was really starting to second guess my decision. But, the anesthesiologist will be out of town the week of Christmas so they'll be doing the surgery on Friday December 20th!!! I am waiting for a call back from Doctor Friedman as I have a few questions that Riley's neurologist's want me to address but, for now, I think it is safe to say we are good to go! Finally.......
We're starting to get in to the Christmas spirit. Our outside lights are up. Our Elf returned yesterday and we'll get our tree this weekend.
|Protesting pictures on our way to PT|
|Elfy in action|
|Our new obnoxious blow up decoration courtesy of Grammie & Pa Doug|
We hope you all had a wonderful Thanksgiving. Once we relaxed and really made a conscious decision to enjoy the day we did.
|Mason checking out Luke!|
|Attempting a group pic with Uncle Brad|
|Dave carving the Turkey|
|Turkey Day nap|
|Grammie at the "kids" table!|
Thanks for checking in on us!
Dave, Megan, Logan, Mason and Courageous Riley