As of today, it has been a full year since we boarded a plane at London Heathrow bound for Los Angeles. We were excited about our somewhat spur-of-the-moment three week vacation, lots of California sunshine, the celebration of Luke’s first birthday, as well as a dear friend’s wedding. Will was a little stressed about taking that long of a break from his research. We had no idea what the next few days would hold.
Looking back, the thought that something was wrong was beginning to nudge its way into my mind, though I never imagined the full extent. Amos had been throwing up periodically over the course of the previous several weeks and we were all mystified. The night before we left for CA, he’d thrown up yet again but seemed fine in the morning. We headed to the airport and by the time we boarded, Amos had thrown up three more times. Mercifully, he made it through the 11 hour flight happy as a clam with no more vomiting. It took just 10 days and three doctors’ visits before we found out what was really going on.
Today it is helpful to remember these things. There’s a huge mix of emotions that rush in when I think back on this time last year. As we mark one year here in California today – something we never would have imagined – we can’t help but see the countless ways in which Amos has been cared for. So while this year has been the absolute hardest, we can also see how the Lord’s hand has been guiding and preserving. Before we came, we had given serious thought to skipping our California visit and going to Greece instead. A year later, we are eternally thankful that we were just a few miles from CHOC instead when Amos needed world-class care.
It goes a long way to gently remind us that the Lord knows what is best in each and every season of life. We never dreamed of being here for a year but it has been clear over and over again that this is the right place for Amos. It’s not been easy to have our life brought to a crashing halt, uprooted, and moved across the world … but we can see some very good reasons why. It is a struggle to not know what comes next (will it ever get easier??) but we do know that the Lord goes before us, is behind us, and hems us in on all sides.
So we do have a few updates! Our visa situation is finally resolved. Thank you to everyone who has prayed. This has been a very time-consuming and frustrating situation for many months now. The resolution was not quite what we had hoped for but that’s okay. Our visa’s have been canceled, as we knew was likely. We will have to re-apply for new ones in about a month once Cambridge University can issue Will the right documentation. Once we receive our new visas, we’ll be able to return in late summer – we plan to leave on September 2nd (see the new countdown timer to the right!). Overall, this timeline is a great comfort. First, to have a timeline at all is fantastic!! And second, we have lots of good things going on for Amos and this gives us more flexibility to wrap them up. What do I mean? Well primarily his trach, tummy-tube, and his vision.
Amos had a second eye surgery just this morning. His doctor thinks it went well but it was quite a long procedure. Instead of simply tweaking the muscles like she had planned, she found a good deal of scar tissue in his right eye from the last operation. She spent her time removing that in hope that the muscles were simply being hindered by the scar tissue. So Amos is a little sore and a little grumpy, but he’s an absolute champ. The only peep of protest I’ve heard from the dear little lad is that he “wished we didn’t have to do this.” I am constantly amazed at how accepting he is of the things that must be done (such as a second eye surgery!). He’s much more aware of what we have to do these days but his willingness is unwavering. Praise God for giving Amos such a spirit of perseverance.
We mentioned last time that Amos passed his swallow-study last week with flying colors. We’re so proud! On Monday he will have his Mikey Button removed (this is the valve/stomach feeding tube he’s had for about eleven months). Amazingly, this is a very minor procedure – you just pull it out (gently) and put some gauze and tape over the whole. Things close themselves up in a matter of hours or less! It will be great to have this tube gone.
The fate of Amos’s trach will be decided by his fourth (!) sleep study on the 30th of this month. That’s very exciting and something we are praying hard for. Now that we have a timeline in place for our return to Cambridge, it would just be the sweetest blessing if we could take Amos back without the trach or any concerns of sleep apnea. As we’ve explained before, Amos needs to show his doctors that he can sleep the whole night while wearing his red cap (which blocks the trach, meaning he is breathing entirely “normally” on his own), without any issues of low oxygen saturation levels.
Please join us in praying for these things! And of course, please continue praying for Amos’s fullest recovery, and his permanent freedom from cancer.
Kelli, Will, Amos, and Lukey
1 I will bless the Lord at all times;
his praise shall continually be in my mouth.
2 My soul makes its boast in the Lord;
let the humble hear and be glad.
3 Oh, magnify the Lord with me,
and let us exalt his name together!