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.

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.”

No Easy Day:
Although I stole the tagline from a Navy Seal book I read a while back, I feel its an accurate description of each day we're at the hospital.

On Saturday night, God graciously gave Avery, Caroline, and myself a full night's rest at the expense of Dorothy's lost evening strolling Avery. It was almost too much, as I woke up with a bit of body pain as my body wasn't used to being at rest in one position for more than a couple hours at a time.

We figured with a full night's rest, Avery would be chippy the next day, but the pain and tremoring seemed to have gotten a bit out of control. His episodes (once started) would be inconsolable, and over the last two days, we've had nurses and doctors come from various wards to try to figure out what's going on with him.

As a result, we increased and added new meds, induced bowel movements, and gave baths and hot packs to try to calm the aggravated boy. We tried everything and became tired and frustrated as nothing would settle him. Avery also seemed to be able to power through the most sedating meds once he became angry; even the strongest meds had little effect on him if he was angry.

We are still trying everything we can to console him and figure out what is causing the pain / anger. The doctors are working with us on the drugs and therapy is also getting involved. Pray that God gives little Avery patience, as he's starting to become more and more aware of where he is, his situation, and his inability to do the things he used to. I sense at times he's becoming very angry and frustrated with what's happened to him and the long road to recovery. We are trying to explain to him that the time spent in the hospital is a necessary process for healing.

Last night, despite having only napped for 45 mins during the day and being obviously exhausted, he was unwilling to sleep with strong meds no matter how creative I got with the strolling. I handed him to my parents but they came back within 30 mins as Avery still refused to sleep. We broke out the serious medication at that point but after 1 hour (in the bed) he still would not sleep. Finally, after placing him back in the stroller, he fell asleep within a couple seconds. This was 12 am. By 03:20, the fire alarm woke us all up due to a triggered sprinkler at the loading dock. Since he was up, we gave him water, stool softener, Morphine, and Tylenol. I just about got him to sleep by 04:00 when the alarm went off again saying the false alarm has been lifted. He was up again and screaming, it was a tiring struggle until 05:00 (which was when his bloodwork needed to be done for PLEX at 08:00) so I kept walking him until we gave him some drowsy meds (Chloral Hydrate) and he finally fell asleep by 05:30 and slept until 07:15. PLEX ended up being delayed from 08:00 until 14:00...

The nurses and doctors tell us that sometimes they see kids get worse before they get better, so that was some comfort, but as we're on PLEX #6 today, the end is approaching and clinically he's not showing drastic differences.

This reminds me of the story of Joseph in Genesis 37. Joseph was 17 when he was sold as a slave and 30 when Pharaoh put him in power. That's a LONG time to be waiting on God, and despite his bleak situation in prison with seemingly hopelessness, he waited patiently on God for the unveiling of His plan.

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.

Last night and today have been good.

The Neurologists are happy with Avery's progress and the Occupational Therapist and Physio Therapist are working hard to get Avery eating and mobile again. They did say its going to be a long road to recovery, but overall there is progress and the outlook is positive.

We're increasing the dosage of Baclofen (muscle relaxant) so that he can be more relaxed and we can preserve his joints and tendons for when he's able to voluntarily move them again.

Avery is sometimes able to turn his head ever so slightly towards who he wants to look at, so that's something worth celebrating!

His updated medication list is shorter now:

Tylenol - pain management; (on demand)
Lansoprazole - antacid (09:00)
CloBAzam - relaxant and anti seizure (09:00, 21:00)
Baclofen - muscle relaxant (09:00. 15:00, 21:00) upped dosage
Melatonin - sleep aid (21:00)
Ativan - anti seizure relaxant (pre-plex)
Benadryl - drowsiness (during plex)

1 Thessalonians 5:18  "Give thanks in all circumstances; for this is God’s will for you in Christ Jesus."

Despite this situation we're in, there is really a lot to be thankful for:

• Tiffany, who insisted we go to St. Joesph's Emergency on Sunday night, which lead to a referral to Sick Kids (as we were sent home from Sick Kids Emergency that same Sunday morning and told Avery just needed rest)
• Sick Kids, for having round the clock care, an amazing team, and truly the best research available in the GTA
• The Canadian health care system, such that we have not had to worry about finances
• Patricia (Caroline's sister), for spending her precious vacation with us every day in the hospital and even extending her vacation to be here longer
• My sister and brother in law (Kat and Adam) who have been visiting every day despite being super busy at work and busy wtih their own lives
• My parents, for making us home cooked food and delivering it every day, and also for strolling avery to sleep
• Caroline's mom, for bringing us home cooked food, flying over from Hong Kong to support us, and strolling avery to sleep
• Dorothy, for puling a marathon all nighter strolling avery (she watched 3 movies back to back) so we could sleep
• My Aunt Katie & Uncle Dick, for organizing all administration for us at home
• All the friends and family who are loving on us, visiting us, bringing us stuff, and are caring for us
• All the prayer warriors who are lifting Avery's situation up to the Lord and pleading with God for healing
• Sick Kids free wifi

Overall, what I've seen is that God Loves Avery soo much and its evident by his enormous fan club rooting for him and God's hand at healing. God's enlisted an army to fight for Avery...God's name has been glorified.

We had a difficult night last night. Avery only slept a couple hours, was very unsettled, and his blood work this morning showed an even lower hemoglobin count (79) and a high potassium amount (5.7) which disqualifies him from his PLEX treatment until it's lowered to 5.5.

The Dialysis team is also fully booked today, so if we don't get his potassium down immediatley, they wont have a spot for him.

We're going to flush his system with saline and see if his levels balance out in time for the PLEX to happen.

Pls pray for God's orchestration through these complications

UPDATE: Gods answers prayers! turns out poking him with a needle to draw blood yields inaccurate results as he tenses up and the sample is skewed. The saline flush was a bit gratuitous in fact and we have asked that the nurses draw blood from the CVL line instead.

The second draw (from the CVL line) showed lower potassium (4.7) and higher hemoglobin (89) and lower white blood cells (11). The PLEX team was able to accommodate us and we're doing PLEX #4 is on!

UPDATE #2: We ended PLEX 8 minutes early so he didn't get the full treatment. His shaking got pretty violent during the end of the treatment so we decided to stop. He ended up settling down once we put in back in his stroller. It's unclear whether or not the shaking was induced by him being upset and overtired. Friday's PLEX will happen in the stroller.

Today, Avery's white blood cell count is down to 13 from 16 yesterday (good news). He has been hovering in the mid-teens for a while now. This means, if his body stops fighting itself, his brain may have a chance to subside in swelling.

Additionally, his hemoglobin level dropped from 84 to 83 (not an improvement but still above the threshold (70) for blood transfusion), so nothing too alarming there.

So far, he seems to be able to move his limbs ever so slightly, so we hope those movements are voluntary and progress in the right direction.

PLEX has been extended to 7 treatments total, so we're done 3 for now and will continue into next week.

Avery went outside on the street for the first time since July 17th! However, I think there was too much activity for him and I think he was a bit overwhelmed. We made one loop around the hospital and came back inside. He didn't seem interested in any of the things he was previously interested in even though they were running a farmers market on the roundabout.

Today Avery had his third PLEX treatment that went a little less smoothly than the second treatment mainly because of the timing of the ativan given was too early, and wore off by the time the PLEX started. He was awake and agitated during most of the treatment, but Caroline and I were able to calm his nerves with Peppa Pig while getting a massage.

His bloodwork showed a lowered Hemoglobin count which (if he shows signs of dropping any more this evening) will need to do a blood transfusion to replace the count. I have already signed the papers to conduct the transfusion in the event he needs it.

Please pray that his body comes around and that he does not need to do transfusion tomorrow.

Other than that, he's had a decent day (with a long nap after PLEX) with the occasional fits of tremors, but we feel its triggered first by him being upset about something, then it starts running uncontrollable until we can distract him.

He has been the most vocal in a while, and was able to lift his arms to have me pick him up (but that was just one time).

His white cell count hasn't dropped since the steroids / IVIG / PLEX, so his body is still fighting itself. Pray his body starts to reboot so its stops fighting itself.

I've charted his ability to move over time and today, his eyes and arms are the only thing that have improved since we've been admitted.

To God be the Glory!
Today, Avery had a great day. God answered our prayers for avery to sleep last night and have less tremors today. I don't know if the meds we changed worked or if it was just God working.

The Doctors came in this morning to discuss with us a plan to change up the meds and their dosages such that we could tackle the tremoring without sedating him too much. We need him to be alert during the day so that he can recover and track progress, but not tire himself out with the tremors. The doctors suggested using Benadryl to calm him if the violent tremors came back.

The current mix of meds are:
Tylenol (pain management) - (09:00, 15:00, 21:00, 03:00) | unchanged
Gabapentin (for nerve pain) - (09:00, 15:00, 21:00) |reduced
Renitiadine (antacid) - (09:00) | unchanged
CloBAzam (muscle relaxant) - (09:00, 21:00) | Introduced new, ramping up
Keppra (anti seizure) - (09:00, 21:00) | removed
Baclofen (muscle relaxant) - (09:00, 15:00, 21:00) | unchanged
Melatonin (sleeping) - (21:00) | unchanged
Ativan (anti seizure) - (pre-PLEX) | unchanged
Benadryl (calming) - (on demand) | unchanged
Lansoprazole (anti reflux) - (pre-PLEX) | unchanged
Nystatin (anti fungal mouthwash) | (09:00, 15:00, 21:00) | unchanged
Morphine (pain management) - (on demand) | off

He had 3 naps today, AND a poo!

We go for PLEX tomorrow morning at 8 am, so we need to do some blood work at around 05:00 and then give him some Lansoprazole and Ativan around 30 mins before hand.

BTW, that is what a plasmapherisis centrifuge looks like.

Last night, Dorothy strolled Avery for about 8 hours and he slept for most of it. His tremors are back and more frequent and violent than before.

We're adjusting his meds to try to relax him in order to promote a better balance and less irritability.

He's watching TV now and able to focus well.