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.
