These past two days have been a roller coaster ride. Avery has seemingly taken a couple of steps back rather than improving. His dystonia has gotten worse and its just difficult to watch as he's rigoring in inconsolable pain. Coincidentally, he hadn't had a bowel movement in a day, which we "think" could have been a culprit to his pain. We tried multiple times to get him to poo with no luck. He continued to shake himself to exhaustion and frustration.

After two difficult nights, and an agonizing PLEX treatment yesterday, the doctors determined he needed to receive a blood transfusion to boost his Hemoglobin levels.

This morning, Avery (still inconsolable) had an enormous bowel movement 10-15 minutes before the head neurologist came in to check on him. We collectively decided that all the medication adjustments and adjustments to plans for treatment were overruled by trying to maintain regular bowel movements with the help of stool softener. 
She told us that bed ridden inactive kids have particular difficulty with bowel movements which can cause immense gastro intestinal pain - exacerbated by encephalomyetits.

Coincidentally, he was very calm after the bowel movement and calm for the blood transfusion that completed without complications.

Through it all, God's consoled us by placing nuggets of hope in our hearts by reminding us that Avery is in His hands and in his care with stories various patients and staff of SickKids have shared with us.
The PLEX staff shared stories and pictures of patients who have made miraculous recoveries, stating that paralyzed bed ridden patients who've received PLEX come walking in to pay a visit a year later. In another case, a mother assured us not to worry as her son who had a similar experience of constant fevers and encephalitis until he was 8 years of age had made a full recovery.

Matthew 6:25-27,33-34
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[e]?"...33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Philippians 4:6-8
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

God has given us peace in our hearts and a real life definition of what it means to truly surrender our desires and agenda to Him. "Give us today our daily bread" has new meaning to us. With each day's unpredictable complications generating more anxiety and worry, we can only ask for God's provision, one day at a time.