Almost 6 months after Riley's diagnosis I still feel so lost amongst the appointments, meds, therapies and decisions related to Riley's life. I don't know that my mind will ever really know what it needs to do each day. Most of the time it just all gets done because it has to.
Some days I rock. We make each appointment on time, every work detail is handled, laundry and dishes get done and beds are made. Some days, it's chaos. The house is a mess, my boys are whiny pants and I miss an appointment or forget to mail a bill. It's just life though. It really could be our life if we were just living the regular "normal" as well. 3 kids under 5, 2 of which are twins. So really what our normal would be is just super sized in absolute craziness! Most days I don't mind because there really isn't another option right now and sometimes I mind and cry and vent and whine myself. Just like any other mom. It's what reminds me that I am normal and it is okay to feel the way I do. Thankfully, I have a community of other moms near and far to remind me that it's okay to feel the way that I do. And that community includes all of you.
Yesterday, we had our appointment at the House Institute. Wanting to secure the fastest appointment possible I took the 8am Monday morning one. Not sure what I was thinking. We loaded the car with all 3 kids at 6:45am and fought traffic to Arcadia to drop the boys off with my mom. Then we hoped back on the freeway and made it just in time for our 8am appointment. Where there's a will there's a way!
We met with an audiologist, explained a bit of Riley's history and repeated the same tests that Riley had done at Providence Speech and Hearing last week. Very similar results and the audiologist also noticed some fluid in both of her ears. More significant on one side. She recommended that we keep the sedated hearing test at the end of July and in the meantime we'll meet with the surgeon for the cochlear implants next week and also get Riley fitted for hearing aids. By doing this she will meet the requirement of having tried hearing aids before the cochlear implant surgery and we still keep this a priority. It made me feel better to know the audiologist understood how important this was to us. After doing more research on Bacterial Meningitis and talking to numerous people it is basically a given that hearing loss will occur post illness. Due to the illness itself and also the strong antibiotics used to treat it. What is frustrating to me right now is NO ONE and I mean no one along the way ever told us that we would need to make Riley's hearing a priority immediately after she had recovered from the infection. Again, another reason I could have really used a manual! I am praying we still have time or that Riley is one of the rare cases that doesn't have cochlear ossification because I don't want to have to live the rest of my life thinking we missed something for Riley, at any point. So we wait and let these appointments come, go through the steps needed to help Riley and hope for the best. It is possible if all goes smoothly (I know what really ever does) that Riley could have the cochlear implants by August!
Today we had an appointment with Dr. Irwin. You all know my love for her so it was a good morning. Riley has started doing a sort of scissor movement with her legs and has been pointing her toes a bit more but, it's not too bad at this point. Riley was a pointy toed baby pre bacterial meningitis so it's not abnormal to see her like that however due to the CP it is something we need to stay on top of. Dr. Irwin recommended Botox and once we get approval Riley will get three injection in each leg to help her muscles. Now if she could only share a bit with her mama! Riley is still off of the baclofen. No need to put her back on right now. Her tremors have all but stopped and it's still a victory I like to celebrate each and every day. She'll keep Riley on the Valium for now twice a day and after the Botox we'll address it again. Riley did show off her odd startle stare for Dr. Irwin and she agreed we need to see the Neurologist ASAP. Our follow up appointment isn't until 8/15 so hopefully the doctor will return my call and either see us sooner or advise us what to do/watch for.
Yesterday, I needed to delete some photos from my phone memory because it was so full and started scrolling through all of our old pictures. An emotional trip down memory lane. It reminded me that Riley is still the little girl she was in those pictures. When a glimpse of her personality comes through these days it's hard not to be emotional. It's those glimpses that show us that little by little Riley is coming back to us. Where she belongs.
Dave, Megan, Logan, Mason and Courageous Riley Roo