Visit to CHOP.

Spring break is over this morning. After a rough start to it, all of us, had a very nice spring break and I think we all feel rested and rejuvenated. Jeremy was a bit upset because we didn’t actually “plan” a spring break. I had a bunch of travel which was to happen right after spring break and I didn’t want to take any more time off of work, but this travel did not involve Jeremy, so he was determined to do a spring break vacation with just him and Edda and his father, but that became a little ridiculous because Bob was getting busier with his new job, the meeting that Jeremy wanted to go to could be done by zoom, Edda had a doctor’s appointment and Mike & Sofie really needed someone to look after Jojo, so there we were, at home with no plans.

What rescued us was a few things, Edda’s aftercare ran a camp every day during spring break from 12-6 which made Edda very happy, I’m not sure I’ve seen her so consistently happy each day. They had aquarium day, bowling day, pizza day, movie day, planting day and the weather was mostly superb. Look how happy she is at pickup! The other thing that rescued us was that Jeremy did take a lot of time off and kept that time and spent it on himself – doing long bike rides and keeping work to a minimum-ish. And the last thing was that I did travel last weekend to Miami – which really made me very happy and feel adventurous and even though I lost a lot of sleep, I feel quite refreshed and rejuvenated. I feel good (finally!), not too moody or upset or rage-y. All good things.

Last Thursday, we had an appointment at CHOP to get the prescription for Daybue. Since I was taking care of the doggies and was travelling the following day, Jeremy did the appointment on his own with Edda. A day trip with a short lunch with Bob at the downtown Philly Shake Shack. So everything went well at the appointment, including figuring out how to log into Edda’s account – after she turned 18 (Vincie too, but it’s easier to ask him to do it), all her medical accounts shut down access to us, so it’s been a journey to get access to them, especially at large-ish institutions, but Jeremy managed to get the password reset and hopefully the drug refills will be more straightforward now. Edda’s dose is 60 mL twice a day, at $20 a mL, this would be close to $900,000 for a year’s dose. Did I tell you that my dad woke us up calling at 11 pm when he found out how much it cost? Anyways, I think the drug company wants us to take it, so they have a team to duke it out with the insurance company. They said the paperwork will start on April 17. Who knows when the drug will start shipping to us. We are cautiously excited – though this morning, as Edda was smiling at breakfast so broadly after a great spring break for her, I kind of didn’t want her to try it because she’s in such a good place right now. Her poor brain! Anyways, it’s a complicated feeling.

In front of Ben Franklin. The original list-maker!

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