99 days ago Bailynn went into surgery with our expectations set to high and our stomachs full of butterflies.
99 days ago she had rods, that she needed and we didn’t want, placed back into her back for the 3rd time.
99 days ago everything seemed wonderful and then, the stegosaurus bones came out of her back. Since then we have had 3 collagen injections, multiple more trips to Indy, and one to Cincinnati. We have gradually went from stegosaurus bones to Quasimodo (in my head at least). I am trying to take a lighter look at a situation that is nothing but horrible.
There are still protrusions. There are still complications with seating, laying and overall protection of the area from getting pressure sores. There is still guilt and joy over the outcome.
She has honestly been doing very well. Despite some more lack luster scans of her kidneys, her hips becoming more displaced, and some outbursts of pain. She is over all….well. She is eating, putting on weight and playing. She gets frustrated by not being allowed to lay flat on her back and by some of our seating modifications, but she’s just going to have to get over it. We all are dealing.
99 days. Hard to believe. We count down, we count up. The days zoom by.
Summer is clawing towards its close, and I could cry. This summer has been eaten up. Our lives have been swallowed by her back, yet again. She hasn’t got to swim once with the pool open. She hasn’t been allowed in the hot tub. She needs a do over – hopefully next summer. We hope for the next of everything.
On top of the crazy focus on her back, kidneys and other medical needs, we have started the process of attaining guardianship of her. Yes, we have to get guardianship of her for when she turns 18 next May. This is to manage her medical needs and finances (roll eyes here). She’s going to be 18!! Can you believe it!?! Me either. We have a lawyer who has filed all the documentation on our behalf, we have a court date, Sept 7th, and then we are set to continue care of our own child….please giggle, roll your eyes, anything! haha. We also have to have an in home interview….seriously. Yup.
Our summer summed up in a few lines. Insanity.
The worst part is my heart dealing with the struggle of it all. I’m human. My brain strains to piece all this chaos together. My heart tugs at thoughts it shouldn’t have, like how we should be planning her senior year of high school. How, instead of CT scans, collagen injections, road trips to doctors, we should be exploring college campuses. We should be laughing and fretting over her walking out our doors and hoping we did our best job to prepare her for the world. Instead, I’m left wrangling botox injection appointments, Pulmonary readings of CT scans to look for lung cysts and coordinating vacation around doctor appointments and procedures. I am seeking pain management options. Trying desperately to ever increases her caloric intake (I have even stooped to blending cookies into her smoothies). No college banners. No desperation over rejection and acceptance letters, nope letters on blood work results, surgery dates and insurance bills. Our life. I tell my heart to shut up, but it still sees the other path. The path I catch myself knowing would be a huge loss to our identity as a family, but there it sits, untouched. Our perfect Bailynn in a different world, walking, joking….but I choose the Bailynn I got and even though my heart rips these thoughts into my brain, I am so glad I have got to fight with her and intern, find me. Find us. Bailynn gets an honorary diploma. She has her masters in Survival. Her doctorate in living. Her specialty in life. How incredible is that.
I hope in 99 more days, I can see this summer with a more positive twist, for now, can we please extend it?! 🙂