Sunday I took a sample to the ER for another examination. Bailynn’s urine is STILL growing bacteria. They are going to grow it out and make sure she is taking the right antibiotic to treat it. This last round of antibiotic really upset her stomach and they are hoping to use a less harsh one.
So, no Tuberous Sclerosis medication still! Month 6. Please pray for her kidneys. I need to take her and have them scanned, but – I’m terrified to know. What does 6 months of not taking the meds to regulate the angiomyolipomas look like?
We will have the results in a few days on the urine. I will call Cincinnati once we do and schedule an appointment to have her looked at there.
Christmas is around the corner and I feel no cheer for it. I’m typically done shopping by now, I have a Thanksgiving food list made out and decor ideas in mind – nada. I just am not there. November seems to have snuck up on me and December seems closer than it should be. When did this year vanish? It’s a whirlwind and most of it, sad.
Maybe I’ll find cheer once Bai is feeling better. Maybe Christmas will get onto my radar. I’m hoping. I just need her to stop crying. I need her happy. The girls and I are home all day with this sad and unhappy girl. You’d think they’d be more effected, they aren’t. It’s normal for sissy to cry. It is normal for sissy to have yuckies (aka seizures). Other kids worry about texting, Facebook, bands, popularity, social status, fashion…..my girls, watch a different version of life. Isobel and Arwyn have helped me cath Bai. The twins will run and grab things for her, change her movie, and hand her toys. All the girls fight over who get to take Bai her meals. There is a different way of living here. There are different life lessons here. We could use some merriment. We could use some holiday magic.
[ FOR THOSE OF YOU NEW TO THE BLOG: Angiomyolipomas are the most common benign tumour of the kidney and are composed of blood vessels, smooth muscle cells and fat cells. Angiomyolipomas are strongly associated with the genetic disease tuberous sclerosis, in which most individuals will have several angiomyolipomas affecting both kidneys. Bailynn has them in both kidneys. The largest is the size of a lime – why do they always compare things to food?!]