Today was another quiet weekend day for Amos. Although none of Amos’ usual therapists were around because it is Sunday, that gave us more time to interact with him more intimately throughout the day, with fewer interruptions. This consisted mostly of reading stories, looking at pictures, and playing for a little while on Amos’ mat on the floor. We set up a nice spot on the ground, and Amos gets to use some fun toys and instruments. Today we had Amos use his Iowa Hawkeyes baseball bat and ball, and he got a few good swings in at the ball as it was balanced on Grandpa’s hand for him. We also had a team of volunteers from Pimco come in and decorate our room with Cars paraphernalia, which Amos really loves. Another major activity of the day was getting his first real bath in a bathtub for over a month, with the help of a special bath chair and our helpful nurse!
The activity wears Amos out quickly, so he has been taking short naps more frequently, and getting more continuous sleep through the night. Although at the time we were frustrated and somewhat disappointed that the first radiation mapping procedure had to be redone due to his internal swelling, in retrospect we are actually somewhat glad for it. Amos got an extra week to rest and recover from all his procedures, and begin these valuable therapy sessions. We have seen him make some great progress even in just one week, so we are very thankful!
Before our prayer requests, I want to mention that we are not clear at this point when Amos will be fully discharged. Because the posterior fossa syndrome could disappear any day (week, month), it is a matter of waiting until we see that happen. And until that occurs we don’t know where Amos is, physically and cognitively speaking, since the characteristic feature of the syndrome is to suppress those faculties. His limited eye movement, lack of vocal chord activity, missing cough and gag reflex, and so on, all could be tied to the syndrome and therefore come back quite quickly when it passes. So, we are here in the oncology unit until further developments.
The biggest matter before us now is, of course, the radiation treatment, which begins tomorrow morning at 7:30am PST. Amos will receive treatment every weekday morning for six weeks straight. Each afternoon, he will get physical, speech, and occupational therapy – so it will be very taxing for him. Especially considering how draining radiation is on its own.
– That the posterior fossa syndrome would pass quickly and Amos would regain a large portion of his motor and cognitive skills both before and after that happens
– That the preparations for Amos’ radiation treatment will have been made with great expertise and accuracy
– That tomorrow’s initial radiation treatment would go very well and set a positive course for our coming six weeks
– That Amos would be able to rest well and retain strength for each day’s treatment and therapy, and make great progress each day throughout the treatment
– That, ultimately, the radiation would be fully effective and have no negative long-term side-effects for Amos
– That we all would be patient as we repeatedly bring our requests before the Lord and await his answers
But far be it from me to boast except in the cross of our Lord Jesus Christ, by which the world has been crucified to me, and I to the world. Gal 6:14
Will, Kelli, Amos and Lukey