Midweek Amos Update #44

Hi Friends,

Thank you for your persistent prayer for Amos and our family. We continue to see the many ways in which the Lord is caring for all of us, and Amos in particular.

Thus far, the week has been a good one. After a fun and restful weekend, Amos is in the best shape yet! His nights have been peaceful and the ambulance rides calm and I even sometimes here squeaks of laughter from the back (We have to sit up front and Amos rides in the back with the medical staff). The fact that he’s sleeping for 6, 8, or even 10 hours at a time at night seems to be making a huge difference! He had been sleeping in 2-4 hour chunks with 2-4 hour wakeful periods in between- not very conducive to all that he (and we) have going on right now. So thank you for praying for his rest. Keep it up!

With all of this sleep, we are seeing Amos continue to enjoy playing, working hard at therapy, and engaging those around him. He continues to love being outside here in the patient play area at CHOC. They have some really neat toys and games that are right up Amos’ alley: a ping pong table, a basketball hoop, a fishing game, and baseball gloves and balls. We’ve been out there every chance we get! It must be so nice for him to have a change of scenery and be outside.

In therapy, Amos is showing more progress each day. Walking with the help of his “speed racer” (walker) and riding his special bike have allowed Amos to grow so much stronger. We now find him sitting up on his own for long periods of time and even attempting to move himself around quite a bit. His speech is still slow in coming and we are having to navigate his ability to communicate in creative ways that complement his voice – mostly by very specific pointing. We are thankful for the ways that he is learning to communicate but it’s also hard to see him struggle now with the most basic of sounds.

Amos’ pulminologists here at CHOC told us last week that the trach is going to be around longer than we had thought. Several doctors had mentioned in the last month that they didn’t see Amos finishing radiation without also being able to lose the trach. However, the pulminologists are in charge of trach care here and their thoughts on the mater make sense even if it is a bit of a disappointment. Amos currently lacks the ability to swallow – something essential to protecting his airway without a trach. So until that ability returns, even if all else is in place, it’s unsafe for him to have the trach removed. One thing the pulminologist stressed is the importance of not removing the trach too soon. So please pray for wisdom, patience for Amos, and that his ability to swallow (and move his tongue about) would return quickly.

In other news, we found out on Wednesday that Amos will finish his radiation treatments three days early. Woohoo!! He will now finish on Friday 4th. There is so much to be thankful for and so much to be amazed at as we’ve seen these weeks zip by. Amos has done so well and we pray that he continues through these last 7 treatments with just as much resilience. We are beginning to discuss discharge from the hospital so please pray that we can get all of that worked out in whatever way seems best. There are a lot of moving pieces to pull together in terms of knowing when we can go back to the house (in Dana Point) and then eventually home to Cambridge. Please pray that things would fall into place at the right time. On a practical level, Will and I are taking a CPR class here at the hospital as part of our trach care requirements. Please pray that we would absorb all of the information given and be confident in our abilities to care for Amos well. It is a little bit scary to think about going home knowing that we would be solely responsible for his care without the help of professionals.

Please also pray…

  • For Amos to continue his forward progress on all fronts.
  • For radiation to be effective with no side effects.
  • For Amos to ultimately be cancer free.
  • For the swallowing to return and for Amos’s speaking abilities to improve quickly.
  • For our family and doctors here at CHOC as we all make plans for what these next weeks and months will look like for Amos and our family both here in the US and in the UK.

And here are some fun pictures of Amos from this week.

But in all these things we overwhelmingly conquer through Him who loved us. (Rom 8:37)

Love in Christ,

Kelli, Will, Amos and Lukey

7 thoughts on “Midweek Amos Update #44

  1. Oh, what a wonderful update. Tell Amos that when I had allergic reaction to medicine (all my muscles except smooth muscles stopped working – 5 to 10 days). Tongue therapy when I was a teenager helped me remember how to swallow, talk, and eat eventually. My cousins and I were all doing it, sticking our tongues out at each other, lifting bottles with buttons (lip strength) and learning how to swallow with our tongues. Our whole family laughed as we discussed who had the strongest tongue or lips :-). So, thankful God put that therapy in my life as a teenager with braces a little unsure ;-)! Many e-hugs to the family. Cally


  2. Dear Kelli, Will, Amos, & Lucas,

    Thanks for your encouraging note, and those dear pictures. The twinkle really is back! May his swallow reflex return soon, and may the Lord continue to strengthen your hearts, day by day.

    And may you know peace in Christ.

    fred (for all of us)


  3. We continue to pray daily for all of you! Amos is a brave boy! You are awesome parents!
    The Lord is where the Hope lies! He is faithful!
    Psalm 27 says, “I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living! Be strong, let your heart take courage! Wait on the Lord!”
    We are claiming this for all of you! We admire your commitment and your faith!
    Love in Jesus,
    Pam, Chris and David Koning


  4. What great and adorable pictures. So glad to read about his progress and the sleep your all getting๐Ÿ˜€๐Ÿ˜€๐Ÿ˜€. We will continue to pray for continued correct decisions and more great progress and the end of treatments next week. In Gods glory.


  5. I’m so happy to see more pictures of this handsome young man doing so well. It’s so neat that he’s enjoying all of those fun musical instruments , his speed racer bike and cool outdoor play things. He’s always loved the outdoors hasn’t he? Emma and send our love and prayers for much continued improvement for Amos and wisdom and loads of Christs peace for you all. Big Hugs!! Laurie


  6. Wonderful pictures. Praying for the end of radiation and a return of Amos’s swallowing reflex. Thanks for all the updates , he looks like he is making steady progress. Love to you all. Eva xox


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