Yesterday’s post got me thinking. Now that Larkin’s Place has involved more and more people I am having to go back to tell the story for those who are new. How do I sum up all of our fear, joy and love? I put together videos for each year so I am going to share those but it’s really hard to understand the depth of despair we have endured and the depth of her medical issues. The joy is apparent. Chase and Larkin are the very best parts of me. I keep him busy with baseball so he doesn’t live in her shadow and she keeps me busy with therapy and doctors. It’s a good balance. Throughout the videos you will see her weight and her eye’s take on different stages. We had clinical control of her seizures for about 6 months and then they returned. You will see where we lose her and where we get her back. Her eyes tell it all.
Larkin has had more EEG’s then I care to count. I learned how to give her shots 2x daily when she was 5 months old and the video of her 1st year shows how badly that medication affected her little body. We don’t have a choice. We have to use drastic measures to control the seizures. It’s a drug called ACTH. It’s a steroid and it’s usage is found in the animal world of race horses and dogs. It’s the 1st line of defense used in the type of seizure Larkin had. I chuckle when people say “oh yeah I have taken Prednisone” – yeah un huh – our drug and that steroid are WORLD’S apart. This drug is like Prednizone on crystal meth, melted down into heroin and then injected all at the low low price of 23k per vial (yes that is 23 thousand dollars and Larkin went through 13 vials during her course of treatment). I smile and listen but people truly don’t understand what this child has been through unless you were in our house and saw the injection sites on her thighs. Medically trained people knew when they saw her that she was going through something terrible.
Through it all we remained strong and as the song in this video says “Come what may, I will love you until my dying day”. Come what may really resonates in my head. Down syndrome has it’s own challenges. Infantile Spams are worse and Lennox-Gaustaut was my very worst fear come true. Larkin now takes medication called Felbamateand Vigabatrin to control her seizures along with the Ketogenic diet. She is a beautiful little girl with family, friends and now even strangers who support her. We have all learned to love unconditionally through her. Come what may – we are here, strong and loving our girl. Enjoy our 2nd year video. I hope it doesn’t bore you too much 🙂 Click HERE for year 2.