Landsford Canal State Park

On Monday I took the kids solo to a very special site of blooming spider lillies. This trip took courage or foolhardiness on my part because it took us 45 minutes one-way down a nature trail away from the nearest bathrooms, which is real risk-taking for Thomas.

Thomas was being shadowed by a sibling at all times!

Nature

We are enjoying much nature!

We have a barred owl who lives on our property. Not only do we listen to him hooting much of the night, but he makes frequent daytime appearances.

Our nest of four baby robins became fledglings this week. Our children were there every step of the process and learned so much.

I really hope our barred owl didn't eat any of the fledglings!

The annual batch of fawns was born in our neighborhood this week! One of them was spotted resting in our ivy one early dawn.

New Career Aspirations

Thomas asked for new scrubs this week, since he outgrew his blue ones. This time he asked for green ones, "So I can be a surgeon like Dr. B----." Over these past few months, he has declared he will be a farmer, a priest (who rides horses), an architect, an artist, and lately a surgeon.

Emerald Hollow Mine

We ended our week with a field trip to an emerald mine in Hiddenite! If you go individually, I don't know what kind of tour you get, but receiving the educational field trip was well worth it.

If you call ahead, like I did, and inquire if the trail through the mine and the woods is accessible for a jog stroller, you will be told yes. I'd like to clarify that that is a very loose "yes," and shouldn't be taken to mean actually yes. Only in a few stretches was the dirt hard packed and smooth like in the below picture. Much of the time, I was pushing the stroller uphill along a bath strewn with rocks that most of us would call boulders that were ranging from the size of my fist to the size of a football. A whole sea of those stones that I somehow had to push my stroller over. Finally at one point, I had to abandon the group and take Thomas in the stroller back. I'd advise taking along babies you can wear on your body or preschoolers who can walk (my kiddo almost four years old made it but not without his legs aching badly by the end).

Unlike little mining ventures we've visited in the past where we've been lucky if one kid of the six came home with one tiny gold flake, this haul was bountiful! We came home with all the beautiful stones below plus two more jars beside! This photo does absolutely no justice to the couple dozen varieties of precious stones and we found and how they sparkle and delight when washed in the sun.

It was overall very fun and I recommend it. Just be prepared to be very fatigued by the long drive out into the country and the rigorous physical exertion in the sun.

Medical Updates

Thomas had appointments with the Rehab clinic and Infectious Diseases (to discuss asplenia management) this week.

I'm managing three medication weans for Thomas, which requires much communication among the various doctors and great attention on my part since they are all on different taper schedules. His blood pressure is currently not stable and is hypertensive, so we regularly have to pause the weaning. We're working on it and it requires much attention.

Thomas is now titrating down from his hydrocortisone using a new product called Alkindi Sprinkle. It allows for an extremely low dose of hydrocortisone for weaning purposes: Get it? Just a sprinkle of hydrocortisone?

Over his months in the hospital, they tried to wean Thomas off his hydrocortisone repeatedly and Endocrinology had to repeatedly slow down the wean, slower, slower, and more gentle. Thomas's body is stubborn! This time, the taper is absolutely glacial and is designed to give his remaining adrenal gland time to "kick into gear" and start producing enough cortisol for his body.

Rather than our continuing to use a 5-mg tablet of hydrocortisone that I have to break into tiny, irregular shards, these new Sprinkle caplets are so interesting. Ours currently come in 0.5 mg, 1 mg, and 2 mg. They have to be taken orally, and they cannot be put in water so I can push them through Tom's J tube. Since they taste bad, this means that Thomas has been consuming them three times a day with 1 tbsp sugar-free ice cream and a tiny drizzle of chocolate sauce.