Somehow time literally flew and here we are, about to head to Denver tomorrow at 4am. It’s going to be an early one. We are so excited to get going and on the road. It’s been a wild couple weeks though. 

Aila has yet ANOTHER ear infection. Double ear infection this time, and possibly her strep infection never really went away. So, sleep has continued to well, not happen. Last weekend was my birthday and I was graced with a respiratory infection for my birthday-probably whatever caused Aila’s ear infection. That has made it hard to pack and get all the things done we need done before we leave in the morning. Tuesday Kyle l and I got to spend our anniversary at Lurie for Aila’s overnight EEG (we were together at least?). Good news on that front-they did not see any seizures on her EEG! That doesn’t mean she isn’t having any…it does hopefully mean she’s not having as many and the medications she is on are working. She also will never have a normal EEG but, no seizures is also rare, so we will take it. 

One of her meds will be increased a bit because after her intensive in Denver we hope to decrease or wean her off of a med she has been on for a bit that did help with her infantile spasms but has also had some side effects that aren’t amazing. Since her seizures seem to be changing we hope this will work and be helpful to her development, but we won’t know until we try. It was a whole fiasco to get the meds she needed before we leave (and we are still working on some of it) because of course, insurance thinks we are trying to take advantage of the system or something. It’s frustrating and feels like such a silly way to have to spend our time but she needs the medications so we have to stay on them until we get what she needs. 

Other kids have been sick on and off and life just keeps moving forward despite all we are having to pack and prep for so needless to say we are just ready to be on the road and past this part. And, today is Coram’s birthday!! Tomorrow is Kyle’s birthday and we will be driving all day-so we are trying to celebrate a little amidst the chaos. 

Thank you again for the continued support-we’ve continued to receive some donations both through support now and outside of this platform and we are so deeply grateful for them all. The words of support and encouragement, the donations, the practical needs met and anything I am forgetting (thanks pre travel/no sleep brain fog!) all mean so very much to our family. 

Please feel free to continue to share as I hope to update throughout her intensive and if people are wanting to contribute in a financial way it’s probably best to send in some sort of electronic format at this time as we will be out of town until October 20 having others take our mail in. 

We are hoping for continued success for Aila, physical health for the whole family (although I have packed about every medication you could think of hahah), and some moments of peace and connection for our family as a whole, as well as for Kyle and I. Lots of love to all of those who are following our journey here, next time I write an update we should be in Colorado 🩷💜.