We are 3 months out from Bailynn turning 18. I can’t believe that. The last few months have been laying out how our spring will look for her.
Here in the next few weeks she will get her VNS replaced at Riley (this helps control her seizure activity and they have a new version geared more towards her particular type of seizures). She will also be having a surgery to attempt to release the tension in her right leg. She has been unable to fully extend it for a while and this has caused a lot of headaches in the operating room. All the previous month’s back surgeries, collagen injections and steroid injections have required her to lay on her stomach. She is unable to do this due to her legs inability to stretch straight. The hospital staff has resorted to hanging Bailynn off the edge of her operating table resulting in some minor bruising and discomfort afterwards. We would like to prevent this in the future, though we’d also like to hope for no need to be on an operating table. This surgery is April 12th and they will first to attempt to just release her hamstring and put more steroids into her hip to help with pain. If that does not work, they will remove a piece of bone from her femur, flip it and reposition it to kick her leg out – sounds awful right. It is for the greater good. It should also relieve pressure on her hip that is displaced and causing her significant pain.
We had the steroid injection done in her hip right after Thanksgiving last year and for months she didn’t scream when sitting in the Rocket or in her chair, we are back to vocalizing our discomfort so if nothing else I am looking forward to having that done again.
I have to tell you quickly about when we went to have the steroid injection done:
The girls and I got up stupid early to be to Indy by 9am their time for the procedure. We knew it was outpatient and came prepared to just have a packed lunch at the hospital as we waited for Bai to recover and get to go home. We lugged all our needed items into the check in area of the hospital. The girls sat in an L shape facing the rest of waiting room, which quickly filled once we arrived. I got all our stuff placed by Bai’s wheelchair, coats off and all the info I need to check her in out of the bag. I walked up the the desk, less than 6 ft behind Bai, Isobel and Arwyn, and started the check in process. During this time Bailynn went into a seizure. This is one of two seizures we have seen during the day (most are night seizures) in the last few months and it was a doozy. I looked back at her. Made sure she was safe. I looked at the twins as the rummaged in their backpacks for something, not even looking at Bai. I look at Arwyn, stylus already carefully drawing in sketchclup app. I tapped Isobel, who’s nose was firm into her book, she said she had Bai, never looked at her or me. This is our norm. The reaction is that of normalcy in our everyday life. I thanked Is and asked her to at least peak at Bai while I was checking us in and she was seizing. There was nothing we could do. We couldn’t make it stop, we couldn’t make it get over faster, we could not do anything. As I started to turn back around, to finish the paperwork and id process, I got a glimpse of the waiting room. This was when I realize just how abnormal our normal is. The waiting room—–THE ENTIRE waiting room —– is looking at our family in horror. One man looked ready to leap from his chair another in utter shock. A mom tried not to look, but couldn’t look away, almost embarrassed that she couldn’t stop staring. Kids peered at Bai. An older couple looked like they could cry . I assured them she was ok, this is something we deal with a lot. They looked at me with such pity. Utter pity. My normal. It horrified a room of people. Our family’s everyday had grown adults in a stated of bewilderment. We’ve had a lot of people in our lives tell us how hard it was to see her have a seizure. We have dealt with a lot over this one symptom of her disorder. There is nothing we can do. She is ok. This is all I have to say. If only the entire waiting room could not take pity, but see how pieces of our hearts have become stronger. We have had to tighten up our strength and emotions to endure watching someone we love and not be able to do anything about it. It is not pity. It is a fortitude. Today’s word of the day. FORTITUDE!
We are trying to get all this done before she turns 18. 18 will land her in the adult wing in hospitals, make some complications with doctors (not all, most are ok with it). I never knew how much 18 would make us shuffle and dance to get things done and squared up for her. We get 18, we’ve got 18. Insane. With such a bleak beginning outlook how can we not rejoice in 18 beautiful years.