Working Hard

James is gaining more stamina and resilience as each week passes at Medek.  Jo-Anne's team is simply amazing at engaging James while really working his muscles hard.  They've loaned us an assistive standing device called the "Dondolino" to continue some sustained standing at home.  The goal is to use it for 30 min each day to work his hips and leg muscles.  There is a high table on this device so it is easy for James to play with a toy while he stands.  The first time I put James in this at home he cracked this smile :)  Such a little charmer.

Monday at Medek:

Jo-Anne will alternate the weight bearing for each leg as James practices standing.

This next exercise is called the "aerial".  The goal is for James to engage his leg and back muscles to push himself up.

Jo-Anne supports his ankles as James initiates stepping on a platform. Jo-Anne also moves the platform in order to encourage his balance in the upright position.

Tuesday at Grandview with Kate:

We were focusing on sitting and weight shifting to reach for objects.

Thursday massage with Shannon:

It's important for James to have massages because his muscles are fighting spasticity which limits his movements.  Massage therapy helps to release some of the tension.  Watching the Wiggles keeps him occupied.

Here is a video of what he now calls me on a daily basis... and it's not Dad.

ABM Part 3, Medek & Winding Trail

ABM Part 3

James began his last set of ABM sessions the first week of February.  This was the fourth month in a row that we have devoted to this type of therapy in addition to Grandview.  We wanted to give ABM a good chance to succeed without conflicting with other methods of therapies.  We will take a break from ABM for awhile now, until a "tune up" (as Judy calls it) is necessary.  ABM is often used in this way - children go 1 or 2 times a year for intensives or as necessary instead of a continual weekly therapy approach.  Judy would like to see James again when he has had more time to work on our at home exercises and when he is ready for the next milestones of mobility. She suggests that you can only go as fast as his nervous system allows you.  Within the last four months James has gained lots of practice rolling and is beginning to show signs that he is interested in what is next.  Thank you Judy, and bye for now.

Medek Therapy

After researching and speaking with a number of other parents who have "CP warriors" of their own, we decided that the next therapy for James would be with Jo-Anne from Medek therapy.  Her company is called S.M.I.L.E. Therapy and you can visit their website by following the link below:

http://www.smiletherapyforkids.com

The Medek (CME) approach to physiotherapy for children with motor delay is very different than ABM's 9 essentials approach.  Here is a description about Medek therapy taken from the Jo-Anne's website:

"It was developed by Ramon Cuevas in Caracas, Venezuela between 1971 and 1973. Medek comes from the Spanish acronym that means dynamic method for motor stimulation.  ​The basic CME assumption is that in a gravitational environment, we require postural control and the ability to pull up against gravity, to stabilize our body in space. Gravity is considered the main stimulus that triggers the neuromuscular system to react.

Our brains automatically react to our environment. We live in a world with gravity and our brain is designed with many automatic responses to gravity, as well as adjustments in tone. In CME therapy we place the child in a position where gravity is requiring a response, and then we wait for them to complete it, with gradually less assistance over time.  In this way the brain practices these normal automatic responses and develops the appropriate synapses to make the response a consistent reaction.

No equipment other than the box set, tubes and table are required. Ex, AFO’s, Walkers etc. are not used during the therapy session. The aim of CME is for the child to move independently against gravity."

Jo-Anne is supportive and knowledgeable with over 20 years in the field of physiotherapy across a number of countries. She keeps up to date with the most current research about brain development, and above all, Jo-Anne is known for getting results.  She works children hard because she knows they are smart and they will respond.  Beginning Medek therapy for James has been difficult, with lots of crying as he is required to do things he has not yet done before such as balancing on his knees and standing.  In our first three visits Jo-Anne has already seen amazing progress and strength in him which is encouraging.  James is at the stage now where you can tell he desires to go beyond rolling to crawling. Medek will help him make the connections and brain synapses necessary so that he can experience how he can do this.

The Warriors

You can tell from this video below that the crying is because he is working hard.  He is learning to engage his muscles to work against gravity as Jo-Anne and Mariana support him to accomplish this.  James has always had a fighting spirit, as do the other children we have met at therapy who have CP.  This is why we call them CP warriors.  They are all warriors.  They battle against the spasticity in their body in ways that are truly inspiring.  It is hard work.  James is building a mental resiliency that will help him soldier on and face his challenges.  This is his marathon.

I wrote a song that describes our experiences of pressing on amidst challenges.  I hope you can connect it to the marathons you run as well.

Winding Trail

You only take one step at a time,

And every step is a mountain to climb,

The path we’re on is a marathon one step at a time

You only live one day at a time,

And some days you’ll fall behind,

The path we’re on is a marathon one day at a time

If we never chose the winding trail,

If we lost our faith or let fear prevail,

Then we’d never see the beauty in how far we’ve come

The path will lead ya where you least expect

It will turn you around, it will leave you a wreck,

The path we’re on is a marathon one turn at a time

You’ll wanna pick up the pace, You’ll wanna slow down the race,

You’ll wanna find someone whose willing to take your place,

The path you’re on is a marathon and now is your time

Chorus

The path will lead you through the valley of the shadow of death,

But Thy rod and Thy staff bring comfort and rest,

The path we’re on is a marathon one prayer at a time

You’ve gotta trust your heart, You’ve gotta trust your head,

You’ve got a crowd of people cheering you on ‘til the end.

The path we’re on is a marathon one step at a time

Chorus

Do you see the beauty in the race you’ve run?

Do you see the beauty in the marathon?

A Mother's Story

It's Ali here this time. I've been the editor of the posts up until now.  I have many thoughts that have been flooding my brain for the past 3+ days since I recently found out that my close friend in Australia is on a journey very similar to ours.  She is in the very early stages of dealing with the grief of the news that her 4th child has special needs. Her baby girl is only 1 month but the MRI has shown significant brain damage.  Cerebral palsy is a likely diagnosis when development is later assessed among other things that the doctors say are likely including intellectual difficulty, hearing and vision. She was 38 weeks pregnant when she needed to be induced with no complications throughout the pregnancy until the end when she couldn't feel the baby move on her OB check up - 38 weeks! That is not a premature child. That baby is full term. Her 3 older children were healthy, full term, no complication pregnancies.  It can happen to anyone.

My heart just aches.  Like, I actually feel heaviness in my body thinking of the burden of this news. Remembering how it felt with James in the early days of knowing - it's a grief that is hard to explain. Understandably, she is absolutely heartbroken (she has given me permission to share what I did above).

It is not something that I have made public until now, but hearing her pain has encouraged me to share not only with her but in this platform too.  The urgent and unexpected arrival of James' birth 12 weeks early on August 1st of 2016 led me to experience PTSD, postpartum depression and anxiety.  

I struggled alongside James as he struggled through the NICU days and the days of learning about the challenges that lay ahead of him.  It was almost as if we were one person.  We battled the many appointments and times of physiotherapy together.  I have had ups and downs on my journey just as James has had on his. I tried so hard to pretend to be ok, or at least functional, but nothing about me was feeling ok. I had insomnia. I cried often. And I thought about James' arrival daily. Now I must paint a picture of what life looked like when we brought James home:

Not only was I dealing with the traumatic events of August 1st, but I had news of his probable diagnosis of cerebral palsy to handle along with an incredibly colicky baby. James constantly cried. He would cry when I fed him, cry afterwards, and cry through the next round of feeding.  It felt like I was being yelled at.  He was so hard to calm down which meant that he wouldn't nap - a crying baby can't nap at the same time after all. So, I dragged my exhausted self outside to walk him in the stroller to sleep.  Thankfully it was a mild October and November otherwise this would not have been possible (December certainly was a different story).  I did this 2-3 times in the day just so he would stop crying and sleep. This seemed to be the only way. I would've kept walking so he could sleep longer but I was too physically tired to walk any further, so I had to go home - and repeat feeding, and this entire process. For 24 hours of the day!! Time meant nothing to me - 2am felt the same as 10am, 3pm, 11pm. And James needed me at all times. Never could I put him down. It wasn't unheard of for me to stay in my PJs all day, not shower, barely go to the bathroom, nevermind eat because James just lost his mind. James had intense reflux and he not only spit up an obscene amount of milk/formula, he would be so incredibly upset. He was so gassy and his stomach was causing so many problems. I so badly wanted to help him with no idea how. Medications and specialized formula wasn't working. I also had to stop breastfeeding in this time because James was not taking to it well - both the act of feeding itself and potentially the milk affected his stomach too. We weren't sure exactly.  I couldn't keep up to the demands of pumping, supplementing with formula and handling a colicky child, so I had to stop.  Stopping breastfeeding took a huge toll on me physically as well as emotionally. I cried so much. Learning the switch to bottle feeding was a hard one for me, particularly with a premature child that you have been trained in the NICU to fear many things - the risk of getting sick (Respiratory Syncytial Virus or RSV in particular which James had monthly vaccinations for) being the biggest one. Bottling is quite the procedure and very overwhelming to an already stressed out mother. It took me time to figure out how to do it well.  Even things such as buying enough bottles. Money conscious me didn't buy enough bottles initially. This is important when you have a baby who feeds regularly and finding time to clean and sterilize those bottles is tough. Twelve bottles eventually was the ideal number. I also had to buy a sterilizer for the bottles (after a long period of time of stressing that they weren't clean enough). This was a system I knew I could handle as it fit 6 bottles so I could have 6 bottles ready and then rotate to the 6 ready in the sterilizer. This took me a LONG time to figure out. With James being so colicky, I was so worried that the bottles were not clean enough and that I was some how causing him to be upset. The specialized type of formula our paedeatrician recommended was not user friendly at all to prepare. Typical formula has a scoop that usually measures as 1 scoop per 2 ounces of water which is an easy way to measure out quantities. The Puramino brand was not this way. It had very specific quantities of water and not a clear 1 scoop per easily measured amount of water. To illustrate, here's what their charts look like online.  No other formulas show a "final volume" amount like this.

So here I am trying to measure out very specific quantities of water, scared that I was making it either too diluted or not diluted enough. This was an anxiety that was very intense. I so wanted to help my child not feel the way he was feeling and I was trying everything in my power that it not be something that I was doing with the formula, sterilization and cleaning procedure of bottles. Switching months later to Goodstart (after seeing a GI specialist) with a very clear formula measurement was good for my mental health.

The circumstances I share above give you an idea of why I was depressed. I felt like a bad mother and I even questioned if I should have had a child at all.  I was told so often "you're doing such a good job", and in many ways I knew that too but that's how you know you're depressed - you can know something to be true but not feel it in your heart even though you want to.  I so wanted to bounce out of it, to take each day like I could tackle it but I was struggling big time. I remember being at a Christmas party (I forced myself to go so wanting not to feel the way I did and thinking I need to get out of the house). It turned out to be a bad decision because all it did was make me feel exposed - expose the fact that I was so far from ok and that night I knew that I needed to search out some help. I felt like I was being stared at. I remember being told at that party like I was visibly tense and so not relaxed. Guess my feelings could not be hidden.  I had no interest in celebrating Christmas that year. I could have easily skipped the holiday all together but I forced myself to other holiday events, mostly because I knew people wanted to see James as we hadn't been out at all with him until that point.

I recognize this is an incredibly sad and dreary post. As a true Canadian, I'd say "sorry" but no, not sorry, this is real life folks. I'm still on this journey with depression. I had a very hard time coping when Mike went back to work in November after a few months of doing the NICU life and first month at home together. My husband knew this and was very worried about me.  A teacher's schedule barely allows for a text during the day let alone a phone call, but he made sure to call and check in on me in the quick spare moments he could during recess or lunch time. Therapy was a must for me. I needed a place to talk about these things. It was something I craved. Most people didn't want to bring up the news for fear of upsetting me yet I was upset that people seemed to brush away the pain and not talk about the hard stuff. I'm ok and will always be ok with talking about it. Journaling has also been a huge help to me. The change that your life has to face when you have a special needs child is intense. And when talking to my friend about her very new and raw experience, I've been reminded of the grief that you have to endure. You grieve the loss of what you thought parenthood would be like, your expectations (we all have them). You grieve the trials set out for your child. No parent wishes for this. You grieve when you see other children of his age doing things so easily that are incredibly difficult or not yet possible.  You grieve because there was nothing in your control or the control of your helpless child in your womb to not enter the world when he did.  All of these emotions you're dealing with when very well meaning people around you want you to not feel this way, want you to appreciate the blessing, the true gift that new life brings, the miracle, etc - all of this is true but when you're feeling the way you do and you hear all of that, you feel that much more guilty that you don't feel that way or at least those emotions do not surpass the ache you feel in your heart.

It's also a difficult road as you talk with other Christians - many well meaning Christians tend to focus on hope in a way that can feel like the pain is being trivialized.  Whether they realize it or not, boiling all of the struggle down to a feeling of hopefulness can come across as trying to ignore/ push away the sadness, grief, anger and frustration. I had a hard time with the word hope. I was hopeful; hopeful that God will one day make all things new; hopeful that He loves us; hopeful that Jesus meets me in my sadness. Hopeful does not mean that sadness can and should not be present. Hopeful does not have to mean happy. I've had to discover that.

If you're able to see the complexity in life and empathize in the raw unfairness of it all, it is such a service to those who are grieving.

I hear you saying, "I wish I had known. I could've helped." As much as I appreciate that, and truly value the village of people around me who care so deeply for myself and my family, I couldn't use your help at that time.  I needed to go through what I did (and really continue to do so in many ways) - to "walk the grief journey" as my Mum would say in her counselling practice.

Once the marathon has begun, you have to let it run it's course.  If you deny the race you're on or cut it short by trying to fix it, you won't run as far as you could have.  It's better to face the grief, wrestle with it in your own way, experience what the situation requires you to experience so that you can pull from it and become resilient (resiliency will be needed for the other marathons to come).

There is a verse written in calligraphy on wood that hangs on our wall in the hallway that my cousin Julia made for Mike and I as a wedding gift.  It has a whole new meaning to my family now.  It is the Apostle Paul encouraging the church in Corinth that

"Love bears all things, believes all things, hopes all things, endures all things" (1 Corinthians 13:7).  A verse typically said at weddings, I now resonate more with as a mantra for my family.