We took Bailynn to have blood work done yesterday and should have the results by tomorrow as to her levels and kidney and liver function. Bob and I tried to get a urine sample, but it was futile. Bailynn decided to soak her diaper right before we came to cath her (on purpose I am certain! she hates being cath-ed, but I don’t blame her!). I am going to try to get a sample tomorrow before we head to the pediatrician.
Bailynn has had some really rough seizures lately. She even bit her tongue so hard yesterday it was turning purple. We assume she has a cold or some other underlying issues. She never has so closely repeated bad seizures and she had 2 yesterday alone. She really scared her sisters and they have watched her do this their whole lives. We were out-and-about during her last one and it took it all out of her. It has been forever since she has been exhausted after a seizure and fallen asleep. Years. Many many years. It was so alarming to Bob and I that I even pulled out her emergency seizure medication from her bag (that we have never had to use) just in case. She finally emerged from it and we took notice of the entirety of Qdoba staring at us. She was fine. We handled it fine. It is a rare thing for that to happen in public. I wonder what the other guests were thinking. This is my baby. If it horrified them, imagine how it made my heart feel. It it scared or alarmed them, imagine my endless sleepless nights filled with nightmares and worry. They got a glimpse – this is her everyday life – our everyday life. I wipe spit off my 14 year old daughter’s face. I change my 14 year old daughter’s diaper. They had a glimpse.
Bai has recently recovered her notion for motion. It has been years since Bailynn has actively tried to roll out or off of things and I next to never have to use her buckles in her seats. No more! Bai rolled off the sofa 2 weeks ago (thank goodness onto a softish landing) and off her bed last week. She lunges towards things and leans like never before. When she rolled from her bed she was entangled in her blankets and that made the decent safer. How she accomplished this is BEYOND Bob and I! She has to leap over layers of pillows, an inflatable rail, and roll after roll of blankets set to position her and her hip just so-so. So, how! How! Bailynn HOW!!!! UGH! We don’t know. She is the master of the impossible. In her decent, she bruised her protruding rods (you know,due to the super model skinny-ness). They are fine now. They looked fine the next morning, but tomorrow I’m going to have the pediatrician take a look at them. I’d rather not have to drive to St. Vincent’s in Indianapolis to have to looked at. Then I need talk about our dietary concerns with her doctor. Bailynn eats the most absurd amount of calories a day and gains no weight. We shall see how all that goes. I have a letter and a prescription from Cincinnati for a new boxed dietary supplement that Bailynn can tolerate, I will try to get the same kind of documentation from Bailynn’s pediatrician and a dietitian. Then, fingers crossed, she will get it approved through insurance. Why is it that kids with feeding tubes and kids that take the same dietary needs via mouth are treated so differently? It is utterly ridiculous to me. I will keep everyone informed with the latest. Never dull, even when I’m not updating (I promise).