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.
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.
Kelli, Will, Amos and Luke