Sick Kids Family

On November 10th, the Wilson family officially became a family of four.  Shae arrived quickly on scene (an hour delivery) and has been catching up to James ever since.  She is both beautiful and strong - a perfect addition to our little clan.

Shae has been coming along with us to many of James' appointments at ABM, Grandview and a variety of other medical appointments.  She soon decided that she would like in on the medical attention as well. Shae developed an infantile hemangioma (also known as a strawberry birthmark) on her right eyelid about 6 weeks after she was born.  So, we took her in to see an ophthalmologist who quickly referred us to Sick Kids Hospital.  We were encouraged not to panic, as this was an issue that is solvable with medication.  The concern was that the hemangioma, if left untreated, might affect Shae's vision. Her eyes were checked and there's no concerns.

So, we didn't panic, but set everything in motion for the Sick Kids follow through.  Ali and I were congratulated by the ophthalmologist on our flexibility about the situation.  This wasn't our first rodeo.

After our consult at Sick Kids, Ali and I tragically laughed with each other about the result.  Shae will be fine with an oral medication.  But, over the next year, we have to make 14 trips into Sick Kids Hospital for Shae as they adjust her medication and monitor her response to it.  She just had to join the party!  Officially a Sick Kids family, we decided to buy the Sick Kids VS shirts and support the campaign.

This was the best shot we could get!

Shae's interested in the non-milk substance entering her mouth!

Anat Baniel Method - part 2

Some holiday fun:

Family Christmas 2017

James jumping around with cousin Aurora:

ABM part 2: "A moving child is a learning child"

After a wonderful christmas break of visiting family and eating some amazing food, James was back in action ready for his first week of intensives (2 sessions a day for a week) beginning the second week of January.  It took some careful consideration to plan out what the two sessions would look like for James factoring in his two naps, driving time, and a quick lunch in between sessions for him but he quickly adjusted to the changes.  It is important to have James in his "sweet spot" for attentiveness to maximize his learning.

As you can see, James really enjoys working with Judy, and Judy seems to be enjoying herself as well.  She has a calming approach that really connects with him.

One of the views that we have been encouraged to avoid with James while participating with Judy in the ABM method is that you can't rely on only showing him how to learn.  You can't rely on repetition in movement, strengthening of muscles, the typical "drill and kill" kind of approach that comes so naturally for us all when you attempt at helping a developing child.  The easiest thing to do is to model "do it this way".  We should guard against the expectation that "I will show you, and you will repeat it".  He needs to figure out his own way about things.

Instead, she has been encouraging us that we simply provide the space for him to learn.  Meaning that you allow him to connect the dots on his own as much as possible.  A deeper and more integrated learning occurs when he has to figure it out on his own.  The highest form of thinking occurs even in infants - problem solving.  Essentially, a problem solving approach puts the reward within the act of learning itself instead of accomplishing the specific required task.  He can discover, explore, fail, try, observe the environment around him and make adjustments on his own.  The more we encourage this, the more James becomes independent.  Here is an example: say he rolls onto an object or toy and all of a sudden he feels uncomfortable.  Instead of removing it from underneath him, allow him to problem solve on his own.  Leave it and see what he does.  Provide the space for the learning to happen.  He can choose a number of options that are available to him.  He can stop rolling, he can roll away and try to grab it again, he can discover the importance of pivoting, he can vocalize for help etc.  All of these options are more helpful to James then simply moving the object out of the way for him before he even reacts.  He can develop his sense of discovery while flooding his brain with a variety of new information.

James has countless opportunities while playing on a mat to try and problem solve around the spasticity.  This isn't an easy task for him though.  It involves reworking around the default setting of spasticity and stiffness.

As we encourage flexibility, creativity, and a good dose of silliness at times the options become more open to him.  At this stage our task as parents is to protect his sense of self discovery, his exploration, his curiosity.  We can create situations when playing where he has to do something such as reach out, to move in a different way etc.

The fine balance we have to tread is to keep the play away from the realm of "too difficult".  You can put a 6th grader in a university class and all they will learn is that education is boring, too hard and they leave feeling defeated.  But the nice thing is, James will always tell me when things are too hard.  His body will tell me and his voice will tell me :)  James did so well last week at his intensive sessions.

Practicing bracing, balance, and weight shifting on a couch:

Exploring feeling the ground with his feet:

James taking some of his first attempts moving forward:

Acceptance and Expecting the Miraculous:

A persistent internal balancing act that Ali and I face is to live the day to day amidst the two forces of acceptance of what is, and to allow yourself to expect miracles to happen.  Both are needed, and valuable. They are both a gift from God.

Acceptance allows for reality to be faced.  It can give you a sense of grounding and a sound mind to guide your day to day decisions.  Knowing the limitations and boundaries of what is possible helps you to plan accordingly.

For us, expecting miracles to happen means that we are trusting God with the future.  We only live one day at a time, and what is time to God?   We put faith in James and his ability to problem solve around the spasticity; we put faith in the ABM therapy and other therapies to bring him further in his development; we put faith in our time, effort and focus with James as having a positive impact.  These are all rational things to put our faith in. To expect the miraculous is another story altogether though.  We live with a hope that God is present and is listening.

We don't always seem to balance these two forces effectively, but they are always at play in some form or another.

At Home:

The next two weeks we'll be applying what we've learned from the intensive sessions at home and then we will be back again in February for another intensive week with Judy.

Blast offs around the house:

Rolling away:

Levels of CP

We thought it would be helpful to provide more clarity regarding the various levels of CP, as it has a very wide spectrum of abilities.  The team that we see at Grandview provided us with a copy of "The Gross Motor Function Classification System (GMFCS)" which is used in the medical world to define the levels of CP (Levels 1 to 5).  We are unsure of what level James is as of yet.  It will be more clear once James is 2 (corrected age not actual).  Grandview and Sick Kids will "correct" James' age until he is 3. In other words, because he was born 12 weeks early, motor abilities will be assessed using his full term expected birthday (October 22nd instead of August 1st). We've had the hope that James is level 1 but according to the criteria below he is looking to be more like a level 3 at his stage of development right now.  Of course, more will be revealed with time.  We've also discovered that there appears to be quite a variety and range within each level as well.  Here's a detailed description of the levels:

Level 1- Walks without restrictions, limitations in more advanced gross motor skills.

Before 2nd Birthday: Infants move in and out of sitting and floor sit with both hands free to manipulate objects. Infants crawl on hands and knees, pull to stand and take steps holding on to furniture. Infants walk between 18 months and 2 years of age without the need for any assistive mobility device.

From age 2 to 4th birthday: Children floor sit with both hands free to manipulate objects. Movements in and out of floor sitting and standing are performed without adult assistance. Children walk as the preferred method of mobility without the need for any assistive mobility device.

From age 4 to 6th birthday: Children get into and out of, and sit in, a chair without the need for hand support. Children move from the floor and from chair sitting and standing without the need for objects for support. Children walk indoors and outdoors, and climb stairs. Emerging ability to run and jump.

From age 6 to 12th birthday: Children walk indoors and outdoors, and climb stairs without limitations. Children perform gross motor skills including running and jumping but speed, balance, and coordination are reduced.

Level 2- Walks without assistive devices, limitations walking outdoors and in the community.

Before 2nd birthday: Infants maintain floor sitting but may need to use their hands for support to maintain balance. Infants creep on their stomach or crawl on hands and knees. Infants may pull to stand and take steps holding on to furniture.

From age 2 to 4th birthday: Children floor sit but may have difficulty with balance when both hands are free to manipulate objects. Movements in and out of sitting are performed without adult assistance. Children pull to stand on a stable surface. Children crawl on hands and knees with a reciprocal pattern, cruise holding onto furniture and walk using an assistive mobility device as preferred methods of mobility.

From age 4 to 6th birthday: Children sit in a chair with both hands free to manipulate objects. Children move from the floor to standing and from chair sitting to standing but often require a stable surface to push or pull up on with their arms. Children walk without the need for any assistive mobility device indoors and for short distances on level surfaces outdoors. Children climb stairs holding onto a railing but are unable to run or jump.

From age 6 to 12th birthday: Children walk indoors and outdoors, and climb stairs holding onto a railing but experience limitations walking on uneven surfaces and inclines, and walking in crowds or confined spaces. Children have at best only minimal ability to perform gross motor skills such as running and jumping.

Level 3- Walks with assistive mobility devices, limitations walking outdoors and in the community.

Before 2nd birthday: Infants maintain floor sitting when the low back is supported. Infants roll and creep forward on their stomachs.

From age 2 to 4th birthday: Children maintain floor sitting often by "W-sitting" (sitting between flexed and internalizing rotated hips and knees) and may require adult assistance to assume sitting. Children creep on their stomachs or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of self-mobility. Children may pull to stand on a stable surface and cruise short distances. Children may walk short distances indoors using an assistive mobility device and adult assistance for steering and turning.

From age 4 to 6th birthday: Children sit on a regular chair but may require pelvic or trunk support to maximize hand function. Children move in and out of chair sitting using a stable surface to push or pull up with their arms. Children walk with an assistive mobility device on level surfaces and climb stairs with assistance from an adult. Children frequently are transported when travelling for long distances or outdoors on uneven terrain.

From age 6 to 12th birthday: Children walk indoors or outdoors on a level surface with an assistive mobility device. Children may climb stairs holding onto a railing. Depending on upper limb function, children propel a wheelchair manually or are transported when travelling for long distances or outdoors on uneven terrain.

Level 4- Self mobility with limitations; Children are transported or use power mobility outdoors and in the community

Before 2nd birthday: Infants have head control but trunk support is required for floor sitting. Infants can roll to supine (from front to back) and may roll to prone (from back to front).

From age 2 to 4th birthday: Children floor sit when placed, but are unable to maintain alignment and balance without use of their hands for support. Children frequently require adaptive equipment for sitting and standing. Self-mobility for short distances (within a room) is achieved through rolling, creeping on stomach, or crawling on hands and knees without reciprocal leg movement.

From age 4 to 6th birthday: Children sit on a chair but need adaptive seating for trunk control and to maximize hand function. Children move in and out of chair sitting with assistance from an adult or a stable surface to push or pull up on with their arms. Children may at best walk short distances with a walker and adult supervision but have difficulty turning and maintaining balance on uneven surfaces. Children are transported in the community. Children may achieve self-mobility using a power wheelchair.

From age 6 to 12th birthday: Children may maintain levels of function achieved before age 6 or rely more on wheeled mobility at home, school, and in the community. Children may achieve self-mobility using a power wheelchair.

Level 5- Self-mobility is severely limited even with the use of assistiv\e technology

Before 2nd birthday: Physical impairments limit voluntary control of movement. Infants are unable to maintain antigravity head and trunk postures in prone and sitting. Infants require adult assistance to roll.

From 2 to 12th birthday: Physical impairments restrict voluntary control of movement and the ability to maintain antigravity head and trunk postures. All areas of motor function are limited. Functional limitations in sitting and standing are not fully compensated for through the use of adaptive equipment and assistive technology. At level 5, children have no means of independent mobility and are transported. Some children achieve self-mobility using a power wheelchair with extensive adaptations.

Distinctions between Levels 1 & 2: Compared with children in level 1, children in level 2 have limitations in the ease of performing movement transitions, walking outdoors and in the community, the need for assistive mobility devices when beginning to walk, quality of movement, and the ability to perform gross motor skills such as running and jumping.

Distinctions between Levels 2 & 3: Differences are seen in the degree of achievement of functional mobility. Children in level 3 need assistive mobility devices and frequently orthoses to walk, while children in level 2 do not require assistive mobility devices after age 4.

Distinctions between levels 3 & 4: Differences in sitting ability and mobility exist, even allowing for extensive use of assistive technology. Children in level 3 sit independently, have independent floor mobility, and walk with assistive mobility devices. Children in level 4 function in sitting (usually supported) but independent mobility is very limited. Children in level 4 are more likely to be transported or use power mobility.

Distinctions between levels 4 & 5: Children in level 5 lack independence even in basic antigravity postural control. Self mobility is achieved only if the child can learn how to operate an electrically powered wheelchair.

Fueling Up!

Since James started ABM therapy he has made some major progress in rolling (and I'm not so bad myself...it's harder than it looks!)