It's been a month or so since our last update. This has been a very fun and a very rough summer. Braven has been going to a ballet/tap combo dance class in Bellingham. He LOVES dance, especially when he gets to switch into his tap shoes partway through the class.

He has been doing really well on his new medication regimen, with his Migraine attacks cut down significantly. They still affect his overall stamina (from depressed blood pressure and heart rate) even though he has so much energy, which causes him to be extra easily frustrated.

He gets three medicines every night and we always do them in order: "Bleh, bad taste"; "Mmm, good taste"; and "Aaah, best test." We've been able to get his Rx meds, including his compounded one, switched over to the Seattle Children’s pharmacy. All of that cost will be covered, without co-pay, as long as we he their financial aid. That's a huge relief for us. We still have to pay for some daily suppliments (a multi, DHA+, Calcium/Magnesium, D/K, Melatonin+) but to have the prescriptions covered is a big step.

Going to bed or nap time is a battle every time. Braven will make any and every excuse to avoid sleep, just like someone else as a child (not David). It's pretty regular that falling asleep takes 1h+ and he's up past 9pm. As any parent with a late sleeper knows, that makes it really difficult to find any time for yourself to reset before the next day. We always read books before bedtime, and he enjoys tracing out the "numbers" on the pages ("They're numbers, not letters, Daddy.")

Elle's parents recently stayed for an extended weekend. We were so grateful to have Nana and Papa around. Braven woke up every day saying, "Are Nana and Papa ready to play?" Elle and I had our first date out in 6? months. It was quite nice, but we were so exhausted that came home early because we couldn't figure anything else to do after dinner aside from go to bed... The whole family went night kayaking at Semiahmoo to see the bioluminescence in the water. It was Nana, Papa, and Braven's first time seeing the water glow and sparkle. B was, unsurprisingly, most excited to sit in the tent on the beach with Nana. And have Nana sit next to him in the car. And go on the flying elephant ride at the Fair. Mostly just anything involving Nana. Oh, and Papa was there, too.

We are still needing to figure out childcare and household help to give me and Elle some relief. She has been experiencing an intense flair this summer that severely affects her muscles, mobility, and uncontrollable fatigue. This has happened before, back in 2018. It was one thing when she could just rest all day and give her body a break; it's extremely difficult now with trying to care for an energetic kid that craves/demands direct attention. All of her symptoms and periodic flairs fit perfectly with MS, but her MRI came back clear of nerve lesions. This is both relieving and frustrating. Not having a clear diagnosis and care path leaves us in the lurch with knowing how to proceed and very little medical support. Her last flair lasted about two months in the summer, so we're hoping this one follows a similar path.

I have a very busy month coming up at work with several critical projects that need extra attention. There is definitely anxiety for both Elle and I about how we'll navigate that, especially if she has any Migraine attacks that require my care. We live our life one day, or sometimes just a few hours, at a time.

If you are able to lend a hand in September with housecleaning, playing with Braven, or walking a dog it would be so appreciated. 

We have updated the Meal Train with helpful dates through September. Simple meals that Elle can just heat up or I can prep quickly when I get home from work are so very helpful, as well as gift cards that we can use towards Instacart (which we use for Costco), Grubhub/food deliveries or Thrive Market (where we get all our supplements and some specific foods for when Braven is nauseous).