Midweek Update #40

Hi Friends,

Thanks for all of the continued love and support you give! Somehow it’s Wednesday and week three of radiation is HALF over! As Will said in our last post, we’re staying at CHOC through Amos’ radiation treatments. We knew this was a possibility and we’re actually really thankful to still be here! Even if we were home, it would be a whole lot of back and forth to the hospital every day for Mr. Amos. As it is, he’s using up all of his energy in therapy and that’s how it should be!

Our week is going well. Amos continues to work so very hard at all of his “jobs” (ie therapy). The most exciting thing for me this week was his ability to say “Ma-Ma” very clearly this afternoon. Eeeeeeeek!!!! I couldn’t help but do a little happy dance! I sure have missed that! He is loving his speaking valve (the PMV) and continues to enjoy trying to make sounds and exercise those vocal chords. He’s making great progress on this front and we are thankful! He’s definitely on track to not need his trach in the near future. A few things need to fall into place before he’s ready to ditch it but everyone is encouraging that it won’t be too much longer past radiation or even sooner.

In other news, Amos has picked up his guitar in the same way that he always used to. I was shocked when I handed him his ukelele today and instead of awkwardly grasping it, he positioned it perfectly under his arm, fingers on the neck, and began strumming as he has done every day since he was 18 months old. I do not lie. His occupational therapist was amazed! It’s great to see Amos get so much stronger and more coordinated. Amos also had another visit from Luke this week. He tried to “scare him” by roaring like a lion, another favorite pastime of late. Amos found great joy in the surprised look on Luke’s face! It is so wonderful to see them together again, even in this strange setting of a hospital room. Truth be told, Amos is just about as interested in Luke as he’s always been (meaning, he mostly sees Luke as a meddlesome baby who knocks down his buildings and tries to eat his things!), but Luke did get many smiles and a wonderful bear hug from Amos today! Please continue to pray for Amos and Luke as they each process all of this. We long for the day when we can all be back together as a family. For now though, we are so thankful for opportunities like today!

Here’s a picture of a recent activity that Amos and I did together. These are his beads of courage- each one marks an event since he’s been in the hospital such as a surgery, pricks, scans, overnight stay, etc. It’s a way of keeping track of this whole story in a visual way and I am thankful for all that the Lord has carried Amos through- with more “beads” being added each day!

photo(6)Please continue to pray this week for Amos as he continues to persevere in this trial. Pray especially for the bad moments when he is hurting, frustrated, angry or confused. We don’t always know and it’s so hard for Will and I to know how to help him and parent him through these days. We also ask for special prayer for sleep. Amos has had a string of really rough sleepless nights and days. With all that he’s doing, it’s astounding to think of the very little amounts of sleep he’s getting sometimes! This is hard on all of us but especially Amos. Pray for the very important gift of sleep for this hard working boy! And lastly, pray that Amos’ shunt incision would heal perfectly. He’s had a pressure sore near his shunt that’s been teetering on the brink of becoming a problem. Please pray that it heals perfectly and quickly. The alternative is having to re-do the surgery, which would be sad.

Thank you so much. We’ll check in with more updates this weekend.

Love,

Kelli, Will, Amos, and Luke

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8 thoughts on “Midweek Update #40

  1. Thank you for the update, very encouraging! Amos is one tough boy! So amazing to hear about his ukulele 😄
    And his interactions with Luke. Also, the string of beads… Brilliant.
    Keeping you in prayer – especially the specifics you mentioned.
    Love,
    The Feichtmann family

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

    Thanks again for sharing the news about Amos’s situation and progress.

    It sounds like a great need on your part is discernment–what is motivating this or that behaviour, emotion, &c., alongside patience, strength, sleep (and more sleep), as well as healing and continued physical improvement for Amos. It must be so frustrating to go from being articulate (for his age) to unable to express himself ; may the Lord grant you and his caregivers the insight to know what is happening and why, and how you can best respond.

    And poor Lucas–just what in the world is going on? Or, if the “what” is answerable, “why” must be much more difficult.

    May you each and all find every grace ready to hand as you face each moment’s need.

    And may the Lord bless you and keep you in Christ.

    With love and prayers from us all,

    fred

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  3. Hi… my name is Mark Norton. My wife, Etta works with Linda Ross at Quinn & Wilson. I have been following the progress of Amos from the beginning.

    As a young boy I was exposed to diverse types of music… from opera to big band and jazz. By the time I was eight years old I started to play the clarinet and tried to emulate my favorite player… Benny Goodman. One of my favorite pieces even till this day, that Benny made famous is Sing, Sing, Sing.

    I know from following Amos that he enjoys music and recently he picked up his guitar. I also found out that he loves the drums.

    A day without music is like a day without love. Music is a positive part of me… everyday. A form of therapy that soothes the soul and clears the air and mind. If you can log onto the internet… check the following link out. * https://www.youtube.com/watch?v=-XKJYDbxneA *

    I think Amos will love Sing, Sing, Sing… drums and upbeat music older than me… I’m pushing 73.

    I have my own way of praying for Amos and I do it everyday.

    Regards,

    Mark 😊🎵🎼🎶

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