Hello Friends and Family,
I’m writing this from the car as Will and I are driving home after spending a long weekend exploring the California coast. We’ve had a great time away filled with rest and a whole lot of crazy beautiful California scenery. We drove up PCH/Hwy 1 all the way to San Francisco, stopping in Carmel for two nights along the way. Special thanks to Gigi, Grandpa, and Aunt Lulu (Lis) for taking care of the boys, the Mellis for hooking us up with a lovely cottage in Carmel, and to the many people who recommended sights and tastes along the way. We had a great time!
A little more than a week ago, Amos had his fourth sleep study. This sleep study was meant to measure his oxygen saturation levels as well as to monitor for any apnea throughout the night while Amos had his trach capped ( i.e. Not in use meaning he’s breathing just as you and I do rather than using the trach throughout the night). The goal of the study was to determine whether or not Amos needs the trach at night- the last step before getting the trach out. It took about a week to interpret the results and we heard on Friday from Amos’ pulmonologist. The good news is that the study was much better than the last one in January- Amos has improved on many levels particularly in his oxygen saturation. He was able to go the whole night with his trach capped and no supplementary oxygen. That is fantastic and indicates really good progress overall! We are excited and thankful for this development.
The slightly disappointing news is that there was still a concerning level of apnea detected, primarily obstructive apnea which almost always is related to an actual obstruction in the airway. The level recorded was only half as high as what was recorded on the last sleep study but still too high. We discussed this at length with Amos’ pulmonologist and even he is not totally sure what the cause of this might be. Every scope of Amos’ nasal and vocal airway has been clear, showing no obstructions so we will likely be trouble shooting/scoping/brainstorming with pulmonary and ENT to come up with an explanation and clear steps forward. The first step will be a sleep induced endoscopy to get a visual of the airway while Amos is sedated. ENT thinks that poor muscle tone in the airway might be the problem.
Please pray with us for wisdom, clarity, and the ability to make things happen swiftly as we all work to get Amos’ trach out. He is SO close and everyone knows it but unfortunately a trach is one of those things that can be a much bigger problem if taken out too soon. We are disappointed that we couldn’t clear this last hurdle but we know we are close and that we have great people working with us on this. Our biggest desire is to return to England without the trach. This would mean much less medical equipment as well as much greater risk of infection as we enter into cold and flu season and a wet British climate. There is still time to get the trach out before our September 2nd departure but we will need all hands on deck to get additional tests scheduled in time to make that happen. Thank you for praying.
In other news, we’ve had some positive vision developments for Amos. He was recently fit for prism lenses by his vision therapist and her prism specialist. Together, they had decided to try him with a prism lense to see if it made a difference for his balance, depth perspective, and overall spatial recognition. As we’ve said before, Amos’ vision is good in both eyes but with the alignment struggles he’s continued to have some double vision and alignment is still a work in progress. With his prism glasses the idea will be that his sense of spatial perception will be more accurate along with depth perception. He won’t necessarily need these lenses permanently depending on how he responds. He will need to have the prisms adjusted every 2-4 months so it will be an important ongoing feature of vision therapy for Amos. We’ll keep you updated on the changes we see but we are hopeful that this will help greatly improve balance and decrease risk of falls.
We have a lot coming up in the next month or so- trips, milestones, etc. We will continue to post regularly to keep you updated. Thank you for praying and for all of the many ways you encourage us!!
Kelli, Will, Amos, and Luke