Our little fighter Avery will be going home this Friday! The past 3-4 months had been very difficult and challenging. Avery went from a perfect healthy little boy to being paralyzed in just 3 days… it was very difficult and helpless to witness. Time went by slowly at Sickkids, counting our stay by his treatments and passing each day only to wish for a good nights sleep for Avery so he could rest and continue to fight the next day. 

As we got more and more dependent on the doctors and nurses at Sickkids, the more we dreaded the move to Bloorview. We were very scared that once we left our little bubble at 5C, we wouldn't be equipped to give Avery the right care.  

Things took a huge turn once we got transferred to Bloorview. Out of nowhere, while he was rolling around in the crib, he opened his mouth and said his first "hi" in 7 weeks. We didn't think this day would come, we didn't think we would be able to hear his voice again. Every day was packed with activities. We were running all over the building, jumping from one therapy session to another… within a week Avery started to sit up and feed himself. It is a miracle to be able to see how much improvement he is making each day. Even the therapists said they'd never seen such speedy recovery in a kid with brain injury, he was surpassing his goals faster than we could make them. 

This week marks our 7th week here at the rehab and everyone is super pleased with his current state. He will be transferred to a rehab closer to home and will continue to work on physio and other things. 

We would like to thank all of you for the love and support you've showed and poured onto us. We are very very grateful for all the prayers and well wishes. Thank you for being there for us, thinking about us, praying for us. You gave us strength that helped us plough through this crazy hurdle and gave us strength to care for Avery. Perhaps it was fate that he's getting discharged early just in time for Thanksgiving… so that Avery becomes a story of strength and faith through this experience…. Happy Thanksgiving to all, this thanksgiving will forever be marked as a miracle to me calvin and avery.

Happy Thanksgiving and Thank you once again from the bottom of our hearts.

sincerely,

C+C+Avery :)

CVL Removal:
At sick kids the day of the procedure (Aug 25), to most of the staff Avery seemed like a totally different person. No one had ever heard him speak or even sit up unassisted. While waiting for the procedure he was sitting up on a matt playing with toys. One of the doctors was in shock as Avery remembered exactly where in her jacket she had placed her pen, and what kind of pen it was. Previously during the only 15 minute encounter with that doctor, Avery was simply complaining, crying, and trying to get the doctor to leave. This time however he was happy, talking, and interacting with the doctor.  The most shocking aspect overall was his memory of not only the nurses, the sick kids floorplan, but the minute details of his encounters with each practitioner.

Speaking:
Avery's voice had taken on a couple different facets during his recovery; from having a monotone voice, speaking slow and slurred, sounding like a duck, to being raspy and over exerted. It was difficult to listen to at times and made me think of how he would integrate back into society once he leaves the rehab facility. The speech therapist has been working with him and using techniques to train him to use his voice properly again and over the weeks, he's surprised us with many words we've never head him say before. His speaking ability and compression is appropriate for a 3 year old child with his pronunciation that needs work. Surprisingly he prefers to speak English over Cantonese and hardly wants to speak Mandarin.

Standing:
The Physiotherapist was worried about Avery's right foot as it was quite pointed and would require quite some time for the Achilles heel to stretch out again before Avery could walk. There was talk about putting his leg in a cast to slowly stretch it back out. During his 2rd session she started to make him stand up on his feet and within a week, his ankle reached a full 90° which allowed him to stand (although he didn't have the strength to do so). The physiotherapist mentioned in 18 years of working, she's never seen someone's foot straighten out so quickly.
Although Avery started to stand, he was unable to walk as the ankle needs to bend less than 90° in order for walking to happen. However on Thursday Sept 8, Avery decided to walk - not just take a few steps - actually walk. He amazed us with this spontaneous miracle and we thank God for continually healing him and returning Avery's body to its previous state so quickly. Each week we return home he's doing something completely different. 

Social:
For the longest time, we were afraid to see see "normal" kids who weren't affected as we would be afraid it would remind us of what Avery used to be like. The emotional stress would be too much and we just weren't sure what kind of feelings would go through our minds if we saw kids do things Avery would not be able to do again. 
We were also afraid Avery would be upset he was not able to do the same things other kids could do or that other kids would not understand Avery's condition and be scared or scarred from seeing him in his state.
To our surprise, as we introduced him to his cousins again, he had no issues with having a tube in his nose and not having the ability to walk. He jumped back into life as if he didn't care that he was different. Being around other kids has helped him get back into life quicker as he doesn't realize he's exercising and improving by playing and interacting with them. We're soo grateful that our friends and family are so loving and have been very accommodating.

Feeding & Medicine
Today (Sept 14), his feeding tube was removed as its been 1 month since it was inserted and the tubes are only good for a month. We have been weaning him off of his muscle relaxant (that should end this week) and he's been off of his anti-reflux medicine for some time now. After the muscle relaxant is fully stopped we'll start weaning the nerve pain medicine and its likely his anti seizure medicine will continue for quite some time after discharge.

Discharge:
During our last family meeting with all the practitioners at Holland Bloorview, they gave us a tentative discharge date of Oct 13 (which would be a standard 2 month stay here). Everyone was thrilled with his progress and the focus turned to what happens after discharge. 
The team highly recommend going to a daycare / school vs staying home as chances of regression are much higher if he's home, but we would need to find an institution that can work with disabled kids. Ultimately he has suffered from a brain injury and his attention, sensitivity, pain tolerance, strength, etc. may be compromised as a result, so he may need assistance where other kids may not.
We will assess again on Oct 5 in our next family meeting if he's ready for a different discharge date.

On Monday morning the head nurse practitioner who's in charge of Avery was surprised to see Avery's improvement over the weekend. She mentioned that she had not seen anyone have such a quick rate of improvement before. We're pleasantly happy and are hoping the rate continues at this current pace.

Avery's started to eat over the weekend, so we've been feeding him small bits of food. The hospital is still just recommending taste, but Avery's able to eat a timbit/cupacake on his own.

His 3 year old temper is coming back (which is a mixed blessing) as he's voicing his opinions on what he does and doesn't want to do, and when he wants to do them. One example is a friend of ours who has a beard came to visit. At multiple points during the visit, when Avery wanted a touch of his bead, he'd stretch out his hand and say "rough"; at which point our friend would have to walk over and let Avery touch his beard. There must be some healing powers in that beard of his.

Physio has been going well also as Avery's showing great improvement day to day where they're already making him stand and stretch out his right ankle that's tight, which postures his foot down. He's able to put some power in his quads and stand up, but needs to work on his balance and strength. He's also getting crafty, as he's trying to use excuses like going to the bathroom to get out of therapy (when in fact he doesn't need to).

Yesterday and today, Avery's become a little sensitive to light and we've seen some awkward movements and eye rolls. We're not entirely sure what the cause of this is, but as he's changing, I suppose any of these can be attributed to the healing process.

Thursday (Aug 25) his Central Venous Line is being removed, so we'll spend most of the morning at Sick Kids; the procedure will happen at 11:30 under General Anaesthesia.

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.