Thursday Bob and I went to bed early knowing that the girls and I would have a long trip ahead of us in the morning. What we didn’t know is that Bailynn would decide to have multiple seizures, vomit, her suction machine would stop working, and she would cry for most all the night resulting in our complete and utter lack of rest. We both got up right at 4am despite this, got dressed, got the girls dressed, and loaded the vehicles (oh, and made a GIANT pot of Coffee!!), one for Indy and one for Toyota. There are not enough cups of coffee in the world. I took two in Rocket and that didn’t even bring me out of my sleep depraved state. I drove the girls through rain and fog longing to crawl back into my bed! I was so tired and was trying to think of someone to call just to talk to – looking at the clock and seeing that it was only 6am, I decided I didn’t hate any of my friends enough to do this to them, so I drove on. Isobel, Arwyn, Lila and Naomi softly chattered, played and watched movies while Bailynn……SLEPT!!! How dare she! No lie she peacefully slept almost the entire way to Indy. I love that girl, everyone knows it, but I could have cried! Her sweet innocent face in complete happy sleep joy made me long for a soft blanket and pillow to cuddle with…..ahhhhh!!! We arrived at Indy and to our first appointment. Another seizure. More barf. This time her sisters saw it. This time the entire waiting room saw it. This time she was in a chair, not her squishy bed. I had no suction machine, her spare shirt was in rocket, and I’m feeling like the world is made of pea soup cause I’m so tired. A few people in the waiting room rushed to give me tissues, wipes, or whatever they had on hand. Not that these items weren’t an arms reach away in her bag, but it was so nice of strangers to want to help. The world is good. Well, in Riley. I’m tired and broken. I will admit this. My brain aches. Bailynn is having a rough patch and I hate when the girls are situated in front row seating. I am so tired. Today I am so tired. I need a vacation – we all do! – and we just had one in May!
Side story: My cousin, Noelle, is going to school at IUPUI and just before Bai went into her dramatic seizure infront of the world, she called me and said she was done with her morning class and heading to see us! We got to visit with her for over an hour! It was lovely! Especially after my week, night, and morning! Times like this are a mental reboot.
Back to life. All the appointments went ok. The one doctor that we were hoping to see was in OR and couldn’t see Bai. We see pulmonary next week. I will have to take her back to Indy and Cincinnati in the next month at least twice. Our dry spell of doctor visits is about to come to an abrupt halt. Good thing Rocket knows her way there and back so well. Hopefully next time Bai will let us sleep.
The trip home put me into a new lull but thankfully it was a respectable time to start calling people to
annoy talk to them. Bai’s back did surprisingly well after a week of adventure with funerals, out-and-about, and trips to Indy. She only has some mild swelling in the irritated area. I got to take her yesterday and have her hair repaired from the butcher job I did on it a few weeks ago to get it out of the broken skin area. It looks much better, sorter than I typically like, but cute.
On to the real issues…..Bai hasn’t had her antibiotic now for 24 hours. Here is where and when things will get real. This is the true test to whether or not it is an infection or inflammation. Keep your hands and feet inside the ride at all times it could get bumpy. I’ll let everyone know how the next few days go. For right now, she has no fever and the area looks stable. Her rods need to stay where they are! Her seizure increase is of great concern to Bob and I cause it is coupled with vomiting which could result in pneumonia. Sometimes the world feels like it stops, right now is one of those times. We are holding our breath and praying for this all to be nothing. Could for just this once it please please please be nothing!