Tuesday, July 21, Amos Update #25

Hi Friends,

For the next few days we will be sending out email and Facebook updates as usual, but starting on Saturday we will be using this new website exclusively for Amos updates, www.amosrossupdates.com. You can put your email address in the bar on the right and sign up to receive automatic updates whenever we post them. Sorry if you have already done so and are receiving doubles for a few days! Feel free to pass it along to others as well.

Today Amos had his second simulation to map radiation for the course of his treatment. He did so great! I was with him when we had the early morning ambulance ride across the street. I think Amos enjoyed the change of scenery because he was giving the ambulance man some serious smiles almost the whole way. His bravery continues to amaze me!!

The rest of our day was filled with PT, a bath, stories, music, and lots of care for Amos. It is so nice to be out of PICU and into the more calm setting of oncology. His nurses are just as great as PICU (although there will forever be a special place in my heart for all the nurses who got us through those first three weeks!) – and my bed is much more comfy.

As we mentioned a few updates back, Amos is likely suffering from posterior fossa syndrome. To clarify, this is one of those mysteries of the brain that happens in children with brain surgery. Often they come out of surgery with this syndrome- resulting in any combination of severe lethargy, lost ability to speak, and general agitation, frustration, and confusion. One of the neurosurgeons said it’s kind of like the brain being stuck on overdrive. Amos can hear us and we think he’s understanding a lot of what is said to him and around him! He just can’t communicate, which is hard for all of us. However, the posterior fossa syndrome is extra mysterious in that it comes and goes in virtually every case. So anywhere between 3 weeks to a few months after surgery, it should disappear. We are thankful for this and asking the Lord for Amos to see the end of this syndrome very, very soon. It would be such a gift to hear his voice again and see him not have to struggle with this additional battle which must seem so huge and frightening to him.

Speaking of gifts, I thought I would echo another thing that we said a few days back. Parents, there is nothing sweeter than remembering together the truths we’ve taught Amos about Jesus. We are painfully aware of the fragility of this life, but thankful for the sure and certain inheritance we have in the Lord. Amos’ catechism questions speak to the simple but profound truths of our great God and His incomprehensible love and care for our Amos and for us. So I’ll leave you with a few more that have encouraged me.

Q: How can you glorify God?
A: By loving him and doing what he commands.
Q: Why are you to glorify God?
A: Because he made me and takes care of me.

Amen.

May we all know these truths today and always.

Prayer requests:

-For Amos to continue to grow stronger and to rest well.
-For Amos to be patient and brave; that we would know how to comfort him and explain things well when appropriate.
-For endurance as Will and I settle in for long days of patient care for Amos. For continued health for both of us.
-For Amos to quickly move through posterior fossa syndrome and make great strides in recovery this week. For his vocal chords, cough and gag reflex, and other motor skills to return.
-For Will and I to have wisdom as we try to explain to Amos what is happening to him.

Love to you all,

Kelli, Will, Amos and Luke

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3 thoughts on “Tuesday, July 21, Amos Update #25

  1. Will and Kelli,

    Pam and I have been following since the beginning, but especially keeping you lifted in prayer to The Throne Of Grace and we will be vigilant in doing so until little Amos is fully recovered. Romans 8:28

    Liked by 1 person

  2. Hi Will and Kelli,
    I have been keeping up with your situation and praying via your emails forwarded to me by Barbara Richart. I met her through your mom and I now am a care giver for Barbs mom.

    Anyway, I just wanted you to know I’m on the prayer team for Amos.

    My youngest son, Andrew, had leukemia when he was 6 so I know some of what you are experiencing. God brought so many great things out of that difficult time. One of the best is Andy’s character that was forged by what he suffered. He is now 21, a senior at Cedarville U and getting married in a week!

    “God is always up to something and he’s up to something good.”

    Love,
    Lois

    Liked by 1 person

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

    And may those “lisps of praise” come soon from little lips. May the Lord restore Amos, and so continue to encourage your hearts and his (and ours).

    And may you all know the peace of Christ in this, as in all things.

    fred

    Liked by 1 person

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