Day 3 at Holland Bloorview Rehabilitation hospital

Avery showed signs of speaking day 1 where he all of a sudden said hi to our nurse. He also demonstrated he could pinch and grab, by playing with toys and feeding himself.

The improvements we've seen in the last week have been exponential and there's almost no more dystonia in his limbs (some of the staff here had trouble identifying which limbs were the good and which were the bad ones). There still is some autonomic movement however, which indicates to me the swelling has not completely subsided, but he's definitely on a ballistic trajectory of improvement. He's already exceeded some of the goals we set forth for him.

Hearing and seeing Avery talk, move, grab, eat, swallow, etc. for the second time generates much more of an emotional impact than it did the first time. It almost feels like pushing through a major roadblock and competing in a race with a disability deserves more honour and glory than without disability. I've realized it's incredibly difficult (physically and emotionally) for him to say something as simple as "hi"; and making the decision to talk really proves that he has accepted the fact that he doesn't sound normal, and that he still wants to despite how difficult it is to get even one word out. Deciding to participate in a race with a known disadvantage takes courage and strength.

I guess thats why God says his power is made perfect in weakness...

1 Corinthinans 12:9-10
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

I suppose if we lived a life with no trouble, we feel we don't need anyone's help at all, but God seems to show his power through hardships, suffering, sorrows, brokenness, weakness, and the like. Countless times in the bible He choses to reveal his power through weakness (like Moses, Jonah, Gideon, Tamar, Ruth, Rahab, David, etc.) and finally uses man (through Jesus) to defeat the Devil (an angelic being).

Below is Avery's ability chart, a picture of him getting ready to look for bunnies in the garden, and him playing with animals.

The road to Rehab

Tomorrow, we will be transported to a Rehabilitation hospital early in the morning.

Living at Sick Kids for 5 weeks has been a little surreal. We've been sheltered here and with a full team of nurses and doctors by our side 24/7, we got a false sense of healing while we've been here and that once we got out, life will return to normal and we would pick up exactly where we left off, that everything at home would be exactly where we left it.

Time seems to have stopped since we've been here. We have no idea what day of the week or day of the month it is, what the weather is like outside, what's going on in the world, how long the grass has grown at home, etc. Although I must say its kind of nice not having to plan out each day and stress about schedule, as each day is a new day that we take at face value. It reminds me of how we need to ask for God to orchestrate each day for us and not let our own personal goals and schedules dictate how each day / quarter / year should be planned out and accomplished.

We're almost not ready to leave, as the next chapter feels closer to reality, and the true healing process is ahead of us as the team at Sick Kids has already dealt with the acute inflammatory issues.

Visiting Holland Bloorview rehabilitation hospital gave me a new respect for social workers, occupational therapists, physio therapists, speech therapists, and the rest of the staff there. These people have marathon projects where each child's progress may not be realized immediatley or often times even long after the kids have left the hospital. Additionally, rehabilitation is a different animal vs the medical side, where a drug is administered and then a desired outcome is observed. What's important for me to remind myself is that its a place of healing vs a place of sadness even though everything you see there is brokenness.

Parts of us are not ready to face the rude reality of life again as it can get ugly at times and the healing process will be a journey and not a quick fix.

Our human nature seeks to solve problems with quick solutions, but God doesn't seem to work that way. He doesn't just swoop in and give us different medication for every illness we may encounter; rather he walks with us every day, joining us on our journey to redemption through this broken world.

New Challenges

Avery's motor skills have been improving quite rapidly. He's being very purposeful with his arm movements and his flexibility is improving quite a bit as well. Though he doesn't have too much power in his legs yet, his arms are getting strong and he's been able to really push away the doctors and nurses when they try to work on him.

Yesterday, he was able to yank out his feeding tube so we had to re-insert a new one into him. Also, he has been in good spirits, good enough to start joking around and making faces at us. He's still cant talk or eat though so still have a ways to go before we can hear his voice again.

Talks about completing treatment after #7 PLEX have begun and a referral to a rehab hospital can happen as soon as Thursday this week. The Neurology team is still reserving the right to hold Avery here a little longer but unless something unexpected happens, we will most likely be out of Sick Kids by the end of this week.

Bonus

Today has replaced the previous best day of my life which was when I saw the F-35 Lightning perform a vertical take off and landing along with multiple fly by's by the blue angels at the Miramar air show in San Diego.

When life seems to be pretty depleted and God gives, its bonus. I've realized that ANYTHING more or new that Avery gains is purely a gift or bonus given by God to his broken body.

We often live life taking for granted our health, our standard of life, security, comfort, etc. When some of those are compromised and something as miraculous as God's designed smile is given, I can see God's beauty through a genuine laugh and smile from a child.

Being content with our current situation has been a difficult pill to swallow, but that just makes us ever the more grateful for anything else thats Bonus.

Avery smiled and laughed today for the first time in a month - it brought everyone to tears except for him.

Job 1:20-22

20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:

“Naked I came from my mother’s womb,
    and naked I will depart.[a]
The Lord gave and the Lord has taken away;
    may the name of the Lord be praised.”

22 In all this, Job did not sin by charging God with wrongdoing.

Uprising

Praise God, Avery's getting better every day and also getting harder and harder to manage as his motor skills are improving. He's starting to try to pull out his tubes, remove tape, and overall just realize his situation. He's slowly accepting the fact that he has a feeding tube and becoming less angry about it.

The referral process has already started to move us from here to a rehab hospital where we will stay and he will enter an intense rehab program. His next PLEX is scheduled for Tuesday next week, and depending on his condition, the doctors may order more or just leave #7 as the final. We still do not know when we will be released from here; most likely once the hospital doesn't need to perform anymore medical treatment.

His mouth is still shut, so we're hoping he can start to open his mouth and start to eat, or else the feeding tube will have to stay for a while longer.

Below are two charts I've been keeping on his progress:

The Hulk

Yesterday, Avery was the talk of the Neurology ward as he suddenly showed signs of recovery where he was able to comprehend our questions and react by pointing to various body parts (his tummy, his knee, mouth, nose, high five, etc.).  The team was quite excited and almost everyone had to come by to see him perform. It was very encouraging to see the entire staff genuinely happy with his progress.

A MRI was also conducted yesterday, where they wanted to see if the inflammation in the brain had subsided. The below image shows the MRI before PLEX had started (right) vs after 6 treatments (left). You can see the white areas have reduced dramatically but still have some ways to go. Additionally, the swelling on the right is clearly pressing against the two small black kidney bean looking areas that obviously have an averse affect on him.

The road ahead will be rough. Avery's still very easily agitated, experiences dystonia, cannot speak, move freely, walk, eat, grasp, is in pain, has tremors, etc. He's heavily medicated to treat the above symptoms. 
If anything throws him off, he becomes the HULK and is almost impossible to calm down / console. He becomes very angry with his situation and as a 3 year old, doesn't have the patience to see his situation through.

Pray that Caroline and I show love through patience and kindness (1 Corinthians 13:4) as its sometimes very difficult to reason with the HULK.

PLEX #7 - Cancelled

After spiking to 38 celcius last night, the night resident doctor came in to assess the situation. Not knowing the back story, the nurse ordered blood to be cultured, antibiotics to be started, and a chest X-Ray just to be sure he hadn't caught anything. 

While I agree that chances cannot be taken, anyone who has followed Avery's charts may not have reacted the same way. 37.5  - 37.7  has been Avery's normal temperature at the hospital along with a high heart rate and high blood pressure. I tried to refuse, but understood that the Hospital could not take the chance.

The Dialysis unit (overbooked) ended up cancelling his PLEX treatment this morning using the fever and antibiotics as a scapegoat to get out of treatment. Of course, Avery has no fever, but just to be sure, he will be on antibiotics for 48 hrs until his blood cultures come back.

Overall; major improvement since starting PLEX has not been observed, so delaying treatment #7 until next Tuesday is not necessarily the end of the world. We will use these next 6 days to get him some rest and relaxation, as busy days have overcrowded recovery days. We hope that we can work on his small improvements and mood to start the rehabilitation process. We also feel the medicine mixture is appropriate and he's calm enough to work with now.

Avery's sleeping for longer stretches now, and this morning was able move his right arm purposefully, giving a high five or pointing to my nose.

Watching a suffering child and being unable to help really makes me feel helpless and trains me to rely more and more on God for strength during this time of suffering. Since there is no one else to turn to, Jesus is the only person I can cast my cares to or give my burdens to. Without being completely helpless we will not depend on Jesus; our human nature will take over and start generating solutions or seeking answers to our problems.

I'm reminded of two verses from the Bible:

1 Peter 5:7
 Cast all your anxiety on him because he cares for you.

Matthew 11:28-30:
28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”