First Cleveland Clinic Visit of 2023

Tuesday, January 17, 2023

First Cleveland Clinic Visit of 2023

Each year either myself or Bobby takes Sarah to Cleveland, Ohio for her twice yearly Cleveland Clinic appointments. She usually has a slew of them on back-to-back days and sometimes has multiple appointments on the same day.

The first week of January brought Sarah and I up to the Clinic for 5 appointments spanning over the course of 3 days. On the first day, she had her infusion which is an all day affair. We usually get there around 7:45 am and leave somewhere between 3-4 pm. On the second day, Sarah had a cognitive evaluation and an ophthalmology appointment. The cognitive evaluation was had to give Sarah a baseline as to her cognitive brain function - as her disease is known to cause cognitive decline over time. The ophthalmology appointment was to check on the condition of Sarah’s eyes and to have the required visit for Sarah to qualify for services in college. On the third, and final day, Sarah had a long EEG to determine if she could come off of her seizure medication (she can) and she also met with her neurologist.

She had a good visit. She got the news that because she has been in remission since 2019 and because she hasn’t had any seizures since then either, she can come off of her seizure meds (which she was stoked about) and also prolong her time between treatments, so instead of coming up to the Clinic every 6ish months, we can see how she does coming every 8-9 months. Hopefully, her body can hang in there without any issues as Rituxan (her medication for MOG - the disease she was diagnosed with several years ago) has its own side affects - especially for those who need to expose their bodies to it long term.

After all of our appointments were done, we stayed an extra day and went shopping and thrifting on Saturday with my mom and dad. We all had a really good time. My parents have the best thrift stores around them that I am looking forward to going back again. We got some good finds - which is always the goal when shopping and thrifting.

A selfie of me on the first day sitting in the chair of the infusion room. My main goal was to point out the gray, crappy sky of Cleveland.

Good ‘ole dreary Ohio winters…

You sleeping on infusion day curled up in a ball with blankets on sleeping.

Infusion days are always long and tiring.

You sitting at the table in Panera with your yellow sweatshirt on shuffling the cards while sitting in Panera at the Clinic.

Shuffling cards for a round of Rummy as we wait in the Panera bread at the Clinic in between appointments.

You and I looking at each other with our masks on while waiting for the ophthalmologist to call you back to his room. I am wearing a blue sweater with my hair down and you are wearing your yellow sweater with your hair braided.

Realizing it is going to be a long afternoon of waiting for our ophthalmology appointment.

You sitting in the ophthalmology office waiting in the chair for the dr to come in. You are wearing a mask, black leggings, and your yellow sweatshirt. Your can is across your lap folded up.

Waiting for the ophthalmologist to come in.

You waiting some more for the ophthalmologist to come see you. You are sitting in a chair with your legs stretched out, same outfit I described in the previous pic. The only difference was a more annoyed look on your face.

And waiting….we got to our appointment early as the one before it was done sooner than expected, and the ophthalmologist was running way behind schedule which made for an incredibly long afternoon.