Dear Friends and Family,
Today is Amos’s birthday and he is now a proud 5 year-old! We are amazed and thankful for our oldest boy, and find it hard to express all of the emotions we experience on milestone days like today. There is a lot that I could say but I am going to keep it short because tomorrow we have to wake up and leave for California!
Amos had a “Pirate Birthday” last weekend with a number of friends here at the house that was a huge success. Kelli made Amos a fantastic Treasure Island cake and we enjoyed a few hours of good fun with our community here. Amos had a great time and certainly ate his share of cake! Then on Tuesday my mom and dad – Zazzy and Grandpop – made the trip over to spend a few days here in Cambridge celebrating Amos’s birthday, before we head off tomorrow, and they remain here for dad’s own birthday on Friday.
We had a great time with them doing fun things around town. We hit some of our favorite places like Wimpole Hall and the Botanical Gardens. Today we scheduled a riverboat ride, which naturally became a “Pirate Ship” along the River Cam here in town. We had a lovely time cruising up and down spotting swans and dodging rowers. Thank you to Paul and Victoria at Cambridge River Trips for making it so fun!
A number of you expressed to us how helpful it was for Kelli to describe Amos’s physical progress in the last post. So I took a video last weekend of Amos playing at the park to help give even more perspective. As you can see, he is moving very confidently, but is still not perfectly steady by any means. He often falls, although thankfully he rarely gets seriously hurt. It is amazing that this time last year Amos was not capable of walking far at all without holding someone’s hand.
As I mentioned, we leave for California tomorrow morning. This time, we are all going – yes, me, Amos, Kelli, Lucas, and wee Sam. Since it’s a bigger crew, we are staying for just over two weeks. We have also packed in a lot and much of it is important. Here’s the schedule so you can pray (all times PST):
- 8 May – 7:30am MRI, 2:15pm Follow-up with Dr. Loudon (Neurosurgeon) 2:15pm
- 9 May – 10:30am Oncology Clinic, 12:30pm Vocal Chord Scope
- 10 May – 10:30am Ophthalmologist & Vision Therapy
- 11 May – 1:00pm Accupuncture, 7:30pm Sleep Study (overnight)
Obviously, the big ticket item is the MRI on Monday. Please pray for another excellent result with no changes at all and clear images. You may also be able to tell that we are taking steps towards decannulation, which is taking the trach out. That is what the vocal chord scope is meant to determine, since the current diagnosis as of February is that his vocal chords are not opening as fully as they should. Until they do, the trach must remain. If the ENT is satisfied that the vocal chords are moving correctly, then that is the biggest hurtle before decannulation, the second being the sleep study. Amos has done these before and they are pretty miserable. Imagine having three dozen wires glued to your scalp, wrapped in gauze, and then being told to sleep with tubes stuck in your nose. The point is to monitor brain and respiratory activity during the night, since it is still unclear whether Amos is dealing with sleep apnea. It would be a huge blessing to have this trach come out on this trip, although we feel like it is a long shot, so please pray to that end!
Thankfully, we will also get some time for a break. The second week will hopefully hold more beach time and a few fun CA activities. Please pray for rest and enjoyment. We also plan to apply for a UK visa for Samuel on Friday so pray for a smooth process for that as well.
And now, some pictures!
The Ross Family
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Ps. 73:27
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