Making the best of it

Week 5 of physical distancing has recently begun which means week 5 of our home therapy program. All of James' therapies have been cancelled until further notice so it's been up to mum and dad to step up as James' therapists of all kinds - physiotherapy, occupational therapy, speech therapy, etc. We have stayed in touch with James' therapists and tried some virtual therapy sessions (thank goodness for technology!). It certainly isn't the same but it's the best we can do for now. James responds WAY better to his therapists than his parents doing exercises with him. We've tried to mix in fun with his therapy and even better, try for him to not be aware he's working at all! We respect what his therapists do everyday with him so much - it is hard work!

We've been using all sorts of different equipment - stander, walker, creeper crawler, bench, peanut ball, stability ball, neuromuscular electrical stimulation (NMES), leg gaitors and most recently we added a vibration plate to our home therapy equipment.

Using NMES while sitting

Practicing 4 point crawling using the creeper crawler

Virtual therapy with Jo-Anne from SMILE therapy for kids

Leg abduction using the gaitors (& an ironing board - it was the correct height!)

Using NMES & the bench

High Kneeling

The vibration plate helps to improve circulation, body awareness, and balance while strengthening bones and muscles. The hypervibe vibration plate was recommended by Dr. Park in St. Louis so it's been on our list to purchase for James' home exercise program. Since we are doing so much home therapy, now couldn't be a better time to incorporate it into his routine. We will aim for two 10 minute sessions a day on the vibration plate with a variety of exercises Jo-Anne showed us today in our virtual session.

Since we are home so much like everyone is these days, we figured now is a great time to potty train - both James and Shae! It hasn't been easy but we're well on our way to have 2 kids diaper-free! James has taken longer to train than Shae because we've been waiting on a supportive seat for the toilet for him so we can leave James and know that he is secure while giving him privacy. He could sit on his own but all of his effort was focused on sitting upright instead of being relaxed enough to do his business.

Early potty training days encouraged by "Potty Monkey" on YouTube

James' throne

We've enjoyed the time home as a family even though we miss our routines. Mike is doing his best to balance home life while teaching his intermediate students online. 2020 is a year to remember!

Wearing green for cerebral palsy awareness day (March 25)

We feel very blessed to live in walking distance to the lake

Their "it's windy" faces!

Spending more time outside these days.

We got our official Campbell's Children's School acceptance in the mail today! We are so excited for James to start JK there in September!

PODD Speech Device, Wheelchair & Campbell's Children's School

It's been awhile since we've shared an update and a few new developments have happened since December - and I'm not talking about the COVID-19 pandemic! If you'd like to see what James and Shae are up to more frequently, feel free to follow me (Ali) on Instagram, @alisonlorene where I post in my stories most days. If you follow me, you likely know most of what this blog update entails :)

This has been an exciting development in James' mobility the last couple months - something he could not do before he had SDR October 31st. He can get into four point position on his hands and knees and get into side sit or W sit. We're so proud of him and we're working hard on the next stage - 4 point crawling.

Since James had the SDR surgery we've noticed that he has more overall strength and energy. He has more energy to use at his therapies in the week which has continued to help him gain more strength and practice learning how to integrate his own movement. He's had a different body to learn to maneuver which is really exciting.

He also expresses more energy at home, which has brought us to a point of needing an augmented communication device. James' limited expressive language often leads to moments of quick and intense frustration. Simply put, we needed a change fast to assist James in communicating his needs and wants as his physicality was growing as well as his more frequent outbursts. We started seeing a new speech therapist at SMILE therapy for kids (Kim) in January and right away she encouraged us to start using an augmented communication device. We've tried pictures and simple apps on our iPad for James in the past with not much success but we were ready to give it another shot. As you could imagine, the older a child gets the more they desire ways of interacting with the people and world around them. Finding ways to communicate these desires is crucial.

The PODD (pragmatic organization dynamic display) system is what we're using with James and although it's been a huge learning curve, it has been a great tool to have at home and to take with us wherever we go. Instead of other systems that mainly have a want/need response, PODD can also help James make comments or share his feelings (at this point we interpret and show him on the iPad but we hope with continued exposure, he can do this himself).

PODD system

Mike and I studied this system for 2 weeks before introducing it to James. There were many things to customize, delete and add and learn how to navigate. We do a lot of interpreting James' wants and emotions and use the iPad to help. For example, if James is frustrated during meal time (a common occurrence), we'd start with "something is wrong" which takes us to a new page on the iPad. We often select "frustrated" (or grumpy or angry - you'll laugh if you know our spirited boy well!), then go to "I want", "something to eat or drink". This takes us to a new page where we have many pictures so we can figure out what James would like. As James is a very picky eater, we use the iPad to help us barter with him, telling him what's first & then. James often reaches for the iPad now knowing that this is a tool that helps him communicate which is exciting to see him take to it so well. We also use it as confirmation of what James thinks/feels (good and bad) even if we already know so we can validate it for him.

We also see our speech therapist at Grandview, Christine, occasionally to check in and review James' goals and plan along with our private speech therapists. She has referred us to Holland Bloorview (a children's rehab hospital downtown Toronto) for a speech assessment and other tools to help James later this spring. So there's lots in place! Speech in many ways has been the hardest hurdle Mike and I have had to face as parents with James. The success of the devices and strategies suggested to help James are largely dependant on our consistent use at home. I've personally felt that stress as a parent as I help James not have so much angst with our communication at home and with others in his community.

James' wheelchair arrived a few weeks ago! We are really happy with the custom fit. James is learning to navigate it around the house and outside. It's a one-arm drive wheelchair - meaning on just the left wheel there are 2 places to push - one that moves straight and the other that steers. We chose this because James prefers his left hand (he's a lefty for sure) and in order for him to push the chair successfully and not force him to use his right hand, he can do it and be a rewarding experience for him. It's been neat to see James light up when he's in his chair. The stroller had a barrier for him and others whereas the chair makes him more present and able to interact with the world around him. The con is that you really have to factor in accessibility differently now (those curbs you could navigate with the stroller are not possible with the wheelchair). We're considering some accessibility changes right now that we need to make to our house as well - whatever the mobility device James is using.

We got an exciting phone call last week from Grandview - James is accepted to Campbell's Children's school for JK in September! Campbell's Children's school is a Durham District School Board school run at Grandview Kids in Oshawa. We collaborated with James' Grandview team (physiotherapist, occupational therapist and speech therapist) to prepare the application in January. We're thrilled he's been accepted! It's a small classroom placement of children with various special needs where he can have physiotherapy, occupational therapy and speech built into his day. This is ideal for James in his post-SDR rehab schedule and the many developmental goals he is working on. We'll have meetings with the Campbell's team in preparation for September as well as after the year (it's very rare that children get more than a 1 year placement), they'll be a team that helps James transition to our local school, Whitby Shores PS. Given the cuts made to special education specifically right now in our public education system, we are so happy that James can have this specialized care and attention in September. He'll be riding this trike in the Grandview halls lots more:

Our schedule has been very busy (until now due to the many closures amidst the COVID-19 crisis). James has seen Jo-Anne every week for Medek at SMILE therapy for kids since he was 18 months old. She is the owner of the clinic and manages an amazing team. Also on Monday's we see Kali, an incredible occupational therapist. We attend SMILE again later in the week for strength training with Jessica or Nicole. We have seen every therapist at SMILE at this point and they are all fantastic. James is so well cared for there and LOVES it! You'll see in a lot of the videos James is wearing a tightly fitted suit, called TheraTogs. TheraTogs help improve postural alignment and stability.

We go to Grandview a lot - physio, occupational therapy, speech, recreational therapy (swimming with an RT and sometimes as a family). James is practicing using a walker, high kneeling, squats, even using the stairs. Here's some Grandview highlights:

In February we introduced a new therapy twice a week to James' schedule at SVS Rehab (swallowing, voice and speech). Mohamed is a speech therapist who specializes in Orofacial Myofunctional therapy. A friend of ours introduced us to this type of therapy which has had an impact on her daughter's drooling and also helped her speech. These things interested us to give it a try. I basically describe it as a face massage while he lies down and watches the Wiggles! Mohamed has explained to me that cerebral palsy can cause children to use all muscles in the face at the same time instead of isolating muscles for specific tasks. Different muscles are used in swallowing, chewing, speaking, crying and even laughing.

James has seen Emily at Neurochangers a number of times since we've been back from St. Louis too. His session on the GE-O mimics a typical gait pattern to help James feel the sensation while initiating steps on his own as well. It's a cool machine!

We continue to see James' massage therapist, Shannon, every other week. She cares a lot for James (& Shae!).

We returned to the first ever private therapy we tried with James when he was just 15 months old - ABM (Anat Baniel Method) with Judy Cheung - if you're interested to see baby James here's ABM Part 1 and ABM Part 2. James definitely remembered her. ABM we describe as a "tune up" - going back to the basics of human movement at his current level of independent mobility. It attempts to set up conditions to bridge new information for his nervous system. It works with what he is currently doing and tries to support him to discover new and more functional ways of moving that he can eventually initiate on his own. ABM with Judy shows the parent ways to attune to James and how to learn ways of continuing play based therapy at home.

James uses his stander at home most days. Since we've been to St. Louis, we have incorporated NMES (neuromuscular electrical stimulation) while using the stander and in sitting positions to help him activate his weaker muscles (glutes, hamstrings and adductors).

We have to end with a little update on Shae. She started preschool in January and although she had a rocky start, she LOVES going now! And eagerly anticipates my parents who come to pick her up two mornings a week.

Burger King date with Opa

Here's James thoroughly enjoying his sister!

Post-SDR Rehabilitation

It's been good to be home! James' schedule has kept us busy 5 days of the week with at least one appointment each day and many home exercises and stretches to do also. This Christmas break there's less appointments which means we do more home therapy (mum and dad become the therapists!)

Back at SMILE Therapy for kids:

It's been really exciting to see the difference in James' trunk using NMES (neuromuscular electrical stimulation). NMES sends electrical impulses to nerves. This input causes muscles to contract and helps build strength and range of motion. The video below shows the positive impact NMES has to correct James' trunk while tall knee walking (a great exercise to target core control, glute strength, hip flexion and weight shifting on lower extremities - all important skills required for standing and walking). We have a few of these machines at home to incorporate into our home therapy routine.

James enjoyed returning to the last couple conductive education classes of 2019 at March of Dimes. They have supported James' development in many ways (gross motor, fine motor, speech, social development and even potty training). He loves the program.

We're fortunate that our local children's centre, Grandview, has agreed to schedule James 3 times a week since being back from St. Louis to assist in his post-SDR rehab. That will continue into the winter months of the new year. We like this for a few reasons (he has wonderful therapists at Grandview, it's close and it's free!).

Shae has been an amazing cheerleader for James. It's so sweet to watch.

NeuroChangers has been a nice addition to our therapy program since being back from St. Louis. He uses the GE-O machine there - a robotic-assisted device in gait rehabilitation. NeuroChangers is the first clinic in Ontario to offer this type of therapy and the only private clinic in Ontario to offer pediatric gait training (and we live very close to the clinic - yay!). The machine can offer both passive and active modes to support James' gait pattern.

Last week James was fitted for a very important piece of equipment in his life: a wheelchair. James has outgrown his strollers and to prepare for his start in J.K in September, we knew this is a needed step of our journey. James seemed to like his new chair as he got measured and adjusted to get the right size ordered. The one pictured below is too big but gives you an idea of what we've ordered for him. It's a one arm drive so James will have the ability (with lots of practice we anticipate) to maneuver the chair with his left hand (his preferred hand).

We knew the day would eventually come when we would begin searching for a wheelchair. We see it as a tool that can aid him towards greater independence, freedom, and self-directed movement. He'll be able to use it for longer distances and offer him more control in his environment. From an able-bodied perspective a wheelchair can seem like a loss of something (why you'll hear phrases like "confined to a wheelchair or "wheelchair bound") or a reminder of something that you can't do (walk). But we've learned to see it more as a tool to assist James with interacting with others while conserving his energy as 15-20 steps is his max currently using his walker.

We've started researching stem cell therapy as our interest has been peaked from following one of our friends in James' conductive education class. Leyla's story with stem cells can be found here. When I was pregnant with Shae I found out about the possibility of storing Shae's cord blood with Inspection Lifebank for free through the CP sibling program at Mount Sinai. We saw this as an obvious yes - why not take advantage of the opportunity to have Shae's cord blood stored free of charge and the potential of using them in James' future rehabilitation? We weren't sure when or if we would pursue stem cell therapy but we've become more interested specifically for the development of speech as seen in some children through research at Duke University. As many would know, James' speech is quite limited and we so desperately want his language to be further developed. We're in the beginning stages of finding out more information from Duke University, the leader in stem cell research. We're also going to see a new speech therapist from SMILE therapy for kids starting in January.

The journey continues! Merry Christmas everyone.