It’s been a chaotic few weeks—months, maybe? Honestly, I’m not even sure how long it’s been since our last update.

In early August, Aila had an eye exam under general anesthesia. She’s such a brave girl, and although it’s a short procedure, anesthesia always throws her off a bit. It disrupts her feeding and sleep, and she’s confused when waking up, not to mention the multiple IV attempts (four this time 😥). It’s overwhelming for anyone, let alone a little one.

She’s had follow-up appointments with several of her specialists, and there are more to come before and after our trip in October. We’re also still trying to figure out why she’s having frequent screaming and crying episodes, which has left us as exhausted parents. The start of the new school year adds to the tiredness and chaos, making this time particularly challenging.

In the midst of everything, Aila was treated for an ear infection and then for strep. She seemed happier and slept better while on antibiotics, but now that she’s off them, her sleep issues have returned.

We’re working with her specialists to figure things out before our Colorado trip. She has an overnight EEG scheduled at Lurie, right before we leave for Denver on our wedding anniversary—talk about a busy week! We also met with her endocrinologist, who started her on new thyroid medication since her hormone levels have been dropping. We’ll get her labs done before we leave as well.

We saw a new GI doctor today who wants to start her on medication for her constipation, pending approval from her ketogenic diet team. Aila’s had GI issues since starting the ketogenic diet in November 2023 to help control her seizures. While the diet has given her the best seizure control and environmental interaction she’s ever had, we’re balancing that with her comfort. We suspect her irritability and sleep issues might be linked to these tummy troubles.

Last week, we met with a nurse practitioner and one of the neurologists on her epilepsy team to review her July MRI. It was mostly good news: her motor skills have potential for further development. However, certain areas of her brain are less developed, which means seizures, communication, and vision will remain significant challenges. We’ll continue to work on adaptations, especially in communication.

This makes Aila’s upcoming therapies even more crucial, as it’s a period of heightened potential for her development. It reinforces our decision to move forward with these intensives. When we return, she’ll have multiple eye appointments and another check-up with a Physiatrist at Shirley Ryan. We’re doing everything we can to support her development, but it’ll take a team of providers and approaches to find what works best for her. Her speech and vision therapists are focusing on using her eye gaze machine and switch buttons to enhance her communication, something we’ll delve deeper into during her November intensive.

NAPA Denver is coming up fast! As we prepare, we’re finalizing lodging, organizing Aila’s therapy team, and setting up pet care and schoolwork. There’s so much to juggle, so if we seem a bit scattered, it’s because we’re carrying more than usual right now.

Thanks to everyone who contributed to our fundraiser, we’ve been able to cover our estimated costs for NAPA and some lodging. We won’t know if NORD can help with expenses until after the intensive, but if they do, it’ll go toward lodging. Your support means so much to us!

Aila is also registered for the November intensive at NAPA Chicago, though insurance may not cover it. She’s used up her allotted speech therapy visits, and she’ll likely max out her OT/PT visits in Denver. Our insurance has a hard cap on these therapies, even with a letter of medical necessity. Despite the financial stress, it’s worth it to continue her sessions at NAPA. She’s been doing great with PT/DMI, even standing with assistance, which is a big achievement for her!

Recently, Fire Buddies (https://www.projectfirebuddies.org/) —a wonderful organization—visited again and brought Aila her own set of arm and leg immobilizers, plus an e-stim machine. These tools will help us continue her therapy at home and protect our backs as she gets bigger. We’re so grateful to have this equipment!

It’s been a busy few months, and the pace isn’t slowing down anytime soon. Thank you for sticking with us through this long update—I’ll try to update more frequently so they can be shorter 😊.