Dear friends and family,
As Kelli wrote in our last post, this week has several significant items stacked up, so we’d like to ask you to pray. Here is a quick list with specific requests and times:
Eye Surgery – 7:30AM (PST) / 10:30AM (EST) / 2:30PM (GMT)
We’ve mentioned how Amos has been wearing an eye patch each day to help keep his right eye working. Tomorrow he’ll have a procedure to tighten the muscles around his eyes to help center them. It may not completely align his eyes, but it’s possible. It should only take an hour or less and Amos will be sedated. Please pray for a safe procedure that is able to fully center his eyes.
Pulmonary Appointment – 8:45AM (PST) / 11:45AM (EST) / 3:45PM (GMT)
Amos will see his pulmonologists in order to get more feedback on his breathing patterns at night. He continues to do fairly well, but will need a low level of oxygen most nights through the trach. We are hoping to downsize Amos’ trach and discuss the results of a recent “swallow study” that showed thin liquids occasionally “going down the wrong tube” when Amos drinks. Please pray for helpful conversation that leads decisively towards clearer answers and concrete next steps during this appointment. Pray that Amos would be able to have his trach out soon and be rid of his nighttime equipment.
Ear/Nose/Throat Appointment – 11:00AM (PST) / 2:00PM (EST) / 6:00PM (GMT)
Amos will go straight from pulmonary to ENT. A few weeks ago Amos had his airway “scoped” to see if there were any blockages, and had a small growth removed that was basically a callous from his trach. This appointment is to scope his nasal airway. He will have a small-gauged catheter with a light and a camera on the end inserted into his nose down to his mouth to look for blockage. There is no anathesia; they just stick it up your nose. But he’s had this done before and I’m informed by a reliable source that it is not painful at all – just weird. Please pray that this would either show there are no problems, or that it would identify “the” problem that will help resolve the breathing issues overall.
Port Removal – 6:30AM (PST) / 9:30AM (EST) / 1:30PM (GMT)
Back before chemotherapy began in October, Amos had a port inserted into his chest. This is a long-term kind of IV that is accessible with a huge scary needle whenever necessary, but which stays clean, painless, and un-yankable whenever it’s not in use because it’s under his skin. Amos has had his port accessed with the huge scary needle (and numbing cream) many times for blood draws, chemo administration, surgeries, etc. and as you can imagine, Amos finds the whole process horrific and occasionally passes out. Thankfully, it’s no longer necessary and we are all very glad to see it removed. Please pray for a quick and uncomplicated procedure that would make Amos a happier and less hardware-laden boy.
Some Other Thoughts on Things
Life has started to stabilize again for our family. Although we remain far away from our home in Cambridge along with our community and church there, we are at the same time settling in to a form of normalcy here in California. Back in June, the sudden and long-term disappearance of weekly attendance at church following Amos’ diagnosis, for instance, was the removal of a sturdy yet surprisingly subtle feature of our normal life. Paired with the pleasant but relentlessly homogeneous weather patterns here, the persistent medical chaos turned our entire summer, fall, and most of winter into an undifferentiated mass of time for us. Always a sunny weekday, but never quite certain which.
So lately the return of otherwise minor aspects of monotonous life routines has added welcome and refreshing contours to our daily existence. Amos has predictable therapy appointments that are regular and (almost) managable. His care is simpler by far (although still exhausting): no more medicines, no more toting around suction machines and ambubags.
Weekends are actually a break for us, because nothing happens. It’s fabulous. Sure, we still have highly disrupted nights monitoring Amos, but at least we can stop the full sprint come Friday evening. We have been attending church again for a few weeks now – we’ve even been on a (very) few date nights. We joined a gym recently. I’ve been getting out a few days a week to spend time working on various academic projects. Amos can get around independently more and more easily, and express himself better and better through both his mental processing and verbal articulation.
The slow creep of these small blessings back into our life has left them mostly unarticulated on this blog. But I know so many of you have been faithfully praying for this level of stuff too. Thank you. The Lord is hearing your prayers. On a related note, a huge aspect of what has made it possible to maintain our existence in general is the money we raised from friends and family last summer. It has gone a very long way, and still contributes towards things like medical expenses of all sorts, our car payment, rent here and in England, the really expensive (really high quality) food that Amos’ specialized diet requires, insurance premiums, even fees for a CPA to get us a fabulous tax refund by deducting a gigantic list of medically related items. Thank you.
To wrap up, I want to share that Amos has shown remarkable signs of himself recently. If you’ve seen our About page, you may have watched the video of Amos doing his Catechism questions, which was taken several weeks before everything fell apart last June. Well, as of January or so we have been gradually returning to “his questions” in the evenings. When we first really tackled them – after about six months and two brain surgeries – Amos got an astounding 26 of the 30 he knew from beforehand. Since then, we’ve added about ten more, and he truly loves to do them. Just like always.
Secondly, it was only about two nights ago that we finally got Amos to sing again. Now, Amos has never been a particularly gifted vocalist, and that has certainly not changed. But despite being able to speak fairly well now, Amos has refused to sing until this past Sunday night. During some family devotions we decided to end with the Doxology, which was something he’d been extemporaneously belting out since he was about 2 years old. We prompted him with having to teach Lukey how to sing it, and somehow that did the trick. Amos sings the Doxology again at last.
Praise God from whom all blessings flow,
Praise Him all creatures here below.
Praise Him above above ye heavenly host,
Praise Father, Son, and Holy Ghost.
Will, Kelli, Amos and Luke