Thank you so very much for your prayers this past week! Amos had his second sleep study (of this trip!) last Tuesday. It was a much better study than the one done just a few days earlier on May 13th – praise the Lord! This study showed that Amos is now breathing much better while he sleeps, but especially so when he’s on a small amount of supplemental oxygen. Going forward, for the time being, we’ll keep Amos on oxygen at night using a nasal canula with the hope that he eventually will grow stronger and not need it.
This is such an answer to prayer because it confirmed the decision to take Amos’s trach out, which as you all know was quick a quick decision! We were a bit nervous with the results of the first sleep study (which took place just two days after his trach came out) that there would be some potentially negative ramifications to having the trach out if Amos couldn’t support himself at night from a respiratory standpoint. Thankfully, we don’t need to consider anything other than the supplemental oxygen which is an “easy fix” compared to the other options that were a possibility, namely a CPAP machine.
So, it’s been a whirlwind of a trip here in California!! We came hoping and praying for a good MRI and we got not only that but also the long awaited decanulation (trach removal). Praise the LORD! What a difference this has already made in everyday life for Amos and for us. What a blessing it will be to throw out all of his trach supplies when we get home to Cambridge! We continue to be so thankful for the amazing progress that Amos has made. He is truly a walking miracle.
Yesterday Amos was able to get into the pool at Gigi and Grandpa’s house, with water up to his chin, for the first time in two years. He LOVED it! What a joy to see him laughing and splashing in the water. We are so very thankful to see Amos able to enjoy one of the things that the trach kept him from doing. We’re thinking swimming lessons will be a goal for the very near future!
A special thanks to Gigi and Grandpa for taking care of us this trip. As I said, it’s been very busy and we haven’t had much time to relax but the time we have had has been well spent. Thank you guys for helping us with all of the business we’ve had on this trip, jet lagged babies, energetic boys, sleep studies, and for keeping us fed. The California sunshine has been a great perk as well!
And another special thanks to Amos’ medical team here. We are forever grateful for the love, care, and attention given to Amos. These professionals have walked with Amos and us from the beginning and it makes such a difference to have these constant and familiar faces- not least of all for Amos who looks forward to seeing his “friends”. We continue to hope and pray for the Lord to be merciful to Amos and our family and grant him even further recovery.
Tomorrow we will all board an airplane and head home to Cambridge. We can’t help but think of a similar trip to CA almost two years ago now when we were unable to get back on the airplane to fly home to Cambridge. What a gift to be able to go back now and continue the work God has for us there. We do not take it for granted.
Thank you for your prayers and support. We love you all and praise God for the body of Christ that is able to sustain and support one another with the love of Christ.
Will, Kelli, Amos, Lukey, and Sam