"I go"

Hello again to the best support system we could ever ask for! We often think of the marathon analogy Mike used in the song he wrote recently called, 'Winding Trail' - and the visual of the crowd cheering James (and us!) along! We so appreciate your support and encouragement.

James has been doing really well and working so incredibly hard in therapy - with less tears and resistance we're happy to say. It is very inspiring and humbling to see him work so hard every day to do something that many of us take for granted. The success we're having in the last couple weeks has been in his ability to army crawl. James' strength and coordination in his upper body in particular has really increased and is helping him find success in inching his way around on his stomach independently. His therapists are really happy about this even though at the moment he is not really using his legs much to propel him forward - we'll get there! His core is also getting much stronger, helping him in many of the exercises his therapists get him to do. James' frequent saying these days is "I go". He gets a lot of joy from moving around. It's awesome to see.

Army crawling his way to Shae:

Here he is at Medek:

We've also started seeing an osteopath who specializes in DNS (Dynamic Neuromuscular Stabilization) for paediatrics. She is working on helping James use his stabilizing muscles in his upper body to properly support him in crawling and transitioning from sitting to crawling movements.

This week we're ending our spring session of Conductive Education at the March of Dimes that we've been doing twice a week since April. We'll be doing 3 weeks of morning program there this summer. They have been excellent in not only developing James' movement skills such as sitting, crawling, kneeling and walking but also speech and fine motor development. Their preschool like environment has been so good for James.

Sitting, balancing and reaching:

Deep sea fishing (he wouldn't be a Wilson unless there is some fishing):

James also still has a massage with Shannon and physiotherapy with Kate from Grandview every other week.

James has a busy schedule! We're so pleased with his team of therapists - they are awesome!  All of these therapy sessions are essentially training for the real world.  It is because of all the hard work that he was able to use the shopping cart while grocery shopping.  A seemingly ordinary occurrence for most children but one that uses all of the skills he has been training for in therapy- sitting, balancing, reaching, bracing, gripping etc.  We're so proud of this little guy.

There are more difficult skills to master next like climbing stairs.  Let the training begin!

Summer Fun:

Assistive Devices

Over the past few weeks James has experienced some new independence with the help of some assistive devices.

The Dondolino standing device helps James experience standing on his own with some supportive bracing around his core, knees and feet.  He loves watching a tv show called The Wiggles while using this device for about 30 minutes a day.

The Creepster Crawler, seen below, has been another experience of independence for James. Alison found this device on Zach's List (which is kind of like Kijiji but for exchanging paediatric equipment).  It helps to bear some of the weight while James moves in the four point crawling position.

Mariana from SMILE Therapy made leg gaiters for James which help with leg muscle stretching in standing or sitting positions.  James has come to really enjoy this routine because each time he wears the gaiters we blow bubbles and have James pop them by reaching up with his hands.  He loves it and it keeps him motivated during these exercises.

Just a few days ago the Firefly "GoTo Seat"arrived for James.  We have really enjoyed this sitting device because it is portable and provides the extra support that James needs in his core.  So far, we have used this seat to fit into his tricycle and to have James join us at the head of the dinner table.  What a guy... He has loved experiencing the outdoors with a new sense of independence.  It was really important to us that James would be able to experience being outside apart from being in the stroller.  This seat is so helpful!

In support of Grandview James had his first Happy Meal.  Every year McDonald's holds a fundraiser with the proceeds of Happy Meal's and BigMac's going towards various charities.  I think he liked it!

Using the ladder and amazing therapists at Conductive Education:

This will make you laugh.  Peek-a-Boo:

And then there's Shae:

Happy Friday everyone!

What a monkey!

Hello to our loyal followers! We've been wanting to write a new post sooner but we haven't had a lot of success with therapy to comment on and weren't sure what to write.  James has had some setbacks in this journey. He is like his mother (it's Ali writing) and is oh so stubborn! It's comical yet frustrating at the same time how alike we are.  James has been protesting a lot in therapy lately.

I would be doing the exact same thing if it were me! He is very aware of what's going on and is resistant (to put it nicely) when he's asked to work hard - particularly with crawling and walking movements. This is where pictures and videos can be deceiving. There have been some people who have thought from previous posts that James can stand with little assistance. It is true that he is getting stronger however he does not have the strength or the coordination yet to get into (and maintain on his own) a 4 point crawling or pull to stand positions.

That's not to say that we haven't seen some small gains lately.  James has begun to open his hands more (instead of hold in a fist) and can now clap them together on his own which he's very pleased about! This week we have also seen improvements in his ability to pivot - when on his tummy, he's been using his upper body to pivot all around (this morning he pivoted around 360 degrees!). Also when he's on his tummy, he bends his left leg (the stronger leg) in an army crawling (or creeping as physios call it) position. You realize when you try it yourself, army crawling is incredibly difficult (go ahead, try it!) You have to use your arms mainly to propel yourself forward. We've been using our hands as a push off for James' left foot so he can feel success moving forward. Here's a video of what he does when he tries without our assistance:

We've started back at Conductive Education twice a week with the March of Dimes. It's an excellent program with a preschool-like set up with a variety of activities. There is one other boy in the class who also has CP but has a higher degree of movement than James at present. They have an excellent mix of fun (lots of singing - James' favourite) and hard work. They push James in many different ways - independent sitting, crawling or walking to and from activities.

This is where it's a very different philosophy of therapy than ABM. ABM's modo is "if he could he would". That was a good approach for James earlier on when rolling was a hard task but not now when James can roll all over the place. He now needs to be pushed to try the harder movements. The modo now is more "we will make him do it so he knows he can". We had a few weeks with Medek when he was really enjoying it after we endured many appointments of crying the entire time! He eventually realized he could do it, and enjoyed the challenge. Here is James working hard in kneeling and weight bearing (a short moment of no crying!).

We've had a setback time right now where he's protesting the challenge and often tries to manipulate us (he'll be screaming one moment, then he's handed to me, immediately stops crying and smiles at his therapist - what a monkey!). We've talked in therapy that a further development in language would be helpful for James in this regard. We could barter with him and he with us. We're confident that James has a high degree of understanding but his expression of language is delayed. Mike and I are attending a 4 week language workshop at Grandview currently to help with strategies at home to further develop this.

We are also in the process with the help of Kate from Grandview to get some assistive devices for James to use at home to encourage independence such as a supportive seat and a special tricycle.  Here is Kate working with James in his standing.

An update on Shae:

You may be wondering how Shae's hemangioma is progressing. Doctors are happy with the improvements. Her right eyelid still has some swelling and purple-ish colour but that will improve with time. We go to Sick Kids every other month now to check on the progress and adjust the dosage of meds based on her weight. She's a very talkative little girl, loves chewing on teething rings, has enjoyed starting rice cereal recently and sleeps through the night!