Thursday Night - A Josiah Update

Greetings Everyone!

I'm having a hard time falling asleep (I've got the cold just like everyone else in the Lower Mainland) so I'll do some catching up with Josiah.

Josiah just today caught a fever and will be on antibiotics for 10 days. Thankfully he doesn't have to be quarantined, and he spent most of the day sleeping (thankfully he was only slightly irritable and didn't have any seizures or spells).

Overall, Josiah has had a pretty good week. The doctors are trying Josiah on another diuretic because he kept on getting puffy with just the other one. This new med (we've nicknamed it 'vit m' because it's hard to pronounce) did an amazing job of flushing a lot of fluids out of Josiah's body, so much so that we're actually seeing definition of his body that we never saw before (knee dimples, elbows, chin, and so on!). It's so beautiful!

Josiah is still having a few seizures, but it's very likely that they are related to the onset of his fever. The seizures of late are minor and very quick (blank out and a really quick d-sat dip, but so quick that he self-recovers). We are very excited because we feel that Josiah is beginning to engage in a way that was impossible prior to his treatments. The doctors have a hunch that Josiah has been suffering from sub-clinical seizures, frequent little seizures that went below the radar and undetected.

Now that the level of meds are getting close to be right for his body, his personality and true self is starting to come out. Seizures, especially frequent seizures, often leave a patient feeling groggy and confused, but now Josiah is frisky and much more active when he's not under the side effects of the meds or seizures.

Also of note, Josiah's ear tube surgery that was planned for this week was postponed because the doctors are not comfortable with Josiah leaving the room and going under anesthetic. Oh, and yesterday the hospital filmed Josiah for next year's telethon - cool!

In the coming weeks and months, if you note that our updates are becoming less frequent it is because Marie and I on an ongoing basis are trying to delicately balance living publicly yet taking care of ourselves privately. After eight months of being with Josiah in hospital wards, eating in waiting rooms, using public washrooms, and sleeping in public quarters, we can tell that we are getting stretched thin and are seeking private spaces for quietness and quality time: easing on our blog updates is one way we are establishing boundaries for our health and wellbeing.

We have been blessed beyond words by everyone who has joined us on this sojourn via our online updates. It's amazing how incredibly helpful this outlet has been for connecting with people, sharing newsbits and prayer requests, and getting to know so many wonderful people. I think many around the world have been blessed as we have. It's important to note that we aren't withdrawing from interaction or closing the doors on our lives for privacy sake: we still are blessed by our visitors and of course we'll be sharing prayer requests and updates as they come. I could continue, but I think you can understand where we are coming from and the dilemmas we face in making the best of stressful and trying situation. There are few easy decisions in this season of life, and your grace and support as we strive to be a family in and out of the public eye is deeply appreciated.

Grace & Peace.
- Andrew, Marie & Josiah