High Tone: Our Nemesis

Hey all :)

A part of what challenges Huxleys mobility is his varying muscle tone. It is very common for children with HIE to have challenges regarding their muscle tone. Huxley has whats called 'mixed tone' but what causes the most trouble for him is his 'high tone.'

High Tone (Hypertonia): 

  – increased muscle tone or tension (stiff or rigid limbs)

Low Tone (Hypotonia): 

– decreased muscle tone or tension (flaccid, relaxed, or floppy limbs)

 

This photo of Huxley shows his high tone in action, although it can be much worse then this. Notice how clenched his little toes are, his hand is fisted and pulled into his chest. Sitting is a trigger for Hux, it is very hard work for him. His high tone is activated when he is excited, upset, or trying to use his hands. Huxleys low tone shows up in weaker trunk and neck muscles. Thankfully Huxleys neck control has gotten so much better but he is still comfy with dropping his head back. We learned early on that the most important thing to do with Hux is to break the pattern of high tone. Huxley extends or 'arches' himself backwards so we work hard to help him find flexion instead. It is a work in progress and with therapy and research we are able to help Huxley overcome these obstacles.  

 

We are using this carrier to help Huxley get used to having pressure on his back and the back of his head which are also triggers for him. It is just one piece of a plethora of equipment that we have to help Huxley achieve greatness :)  

Defining Huxley

Hi all! 

If you look above ^ I've added a couple tabs on the site which will lead you to separate pages that give definitions for both (HIE) and (CP). Feel free to take a look in case you are wondering what either of these acronyms mean. 

It is important to understand that even though Huxley has been 'defined' as having these conditions from birth it by no means defines who he is or who he will be. We have been continually told that because of the plasticity of the brain, 

"Brain plasticity

 (from the Greek word 'plastos' meaning molded) refers to the extraordinary ability of the brain to modify its own structure and function following changes within the body or in the external environment. The large outer layer of the brain, known as the cortex is especially able to make such modifications of the brain." 

the future is entirely unknown for Huxley, so we just provide him with every opportunity to be the best most awesome boy he can be! It is both incredibly helpful and frustrating that neither his doctors nor his therapists can predict his outcome. We are trying to just enjoy our little family and help Huxley explore the world. 

Frostig, R (2012, April, 3). What is brain plasticity?. retrieved June 20 2015, from BrainFacts.Org Web Site: http://www.brainfacts.org/about-neuroscience/ask-an-expert/articles/2012/what-is-brain-plasticity

Therapist roll call

We have many appointments and many therapists in our little circle of support. I thought that I'd share with you all what that looks like. 

Just before we left the NICU, we were asked if we wanted to join Queen Alexandra's early intervention program. We had no idea what it all entailed but were encouraged to say yes. I now know how important early intervention is and I would encourage any family in similar circumstances to do the same. Our first visit with our early intervention therapists was when Hux was twelve weeks old. Since then we have had appointments almost weekly for his first year of life.

Huxleys therapists: 

• Infant Development Specialist

Once a month we see an infant development specialist who knows where NT (neuro typical) children should be on the typical milestone scale. We know that Huxley is following his own scale but their job is to provide a baseline and to offer suggestions on how to help Huxley achieve typical advancements. Lately she has been encouraging us to teach Huxley sign language and to build sensory boards for him to explore.

• Physiotherapist

We see physio every two weeks. She helps us help Huxley achieve basic motor functioning. She also keeps her eye on Huxleys range of motion to make sure he doesn't get locked up anywhere. Huxley desperately wants to crawl, he's getting so strong and crawls if you help support his weight so that is pretty neat. Huxley also has very high tone when he's upset or excited and our physio has been so helpful to teach us how to break up that pattern of tone..which is something I'll talk more in depth about later.

       ● Occupational therapist

Huxley didn't start seeing an OT until he was 9 months or so. We see her once every few months. Usually one would be involved around six months if there was feeding concerns but luckily we have been okay on that department. We've been taking it slow with food, mostly purees still but starting to fork mash and he was just gobbling up goldfish crackers on his birthday :) Our OT will also help us with sensory concerns as they come up. Hux is pretty sensitive to sound, that's the only sensory concern we have so far. 

        ● Chiropractor 

Hux goes to a chiropractor every two weeks to have spinal adjustments and lately reflex locomotion therapy.  Since we started taking him his head control has gotten really strong and he really tries to propel himself forward when on his tummy. It's pretty neat!

         ● OT specializing in seating

Huxley is unable to sit supported or unsupported so seating has become a strong focus since he's getting big and carrying him everywhere is getting really hard.  We took him to Queen Alexandra to a special seating clinic and now they are designing a seat for Huxley.

Huxley is also monitored by a pediatrician that we see every three months and a neurologist that we see twice a year. 

This summer we have an opthamologist appointment, a hearing test, in the fall we'll be starting up with speech therapy, and we have a referral to see an osteopath to check Huxleys hips. 

I feel so lucky that we live in this part of the world, particularly after having Huxley. Our QA therapists come to our home which is so very convenient.  We feel very supported when it comes to therapists that are helping us help Huxley. Every day is therapy with our little man but we try to make it fun too and he's come so far already. 

Thanks for reading about this little snap shot of our lives. More to come!  

Xo

It's been one hell of a year..

Here's our beautiful boy just a few days after he was born. 

Seeing as this is the first post, I suppose I should start at the beginning. The intent of this blog is to give family and friends an opportunity to follow Huxley's journey and for us to be able to raise awareness about hypoxic ischemic encephalopathy and cerebral palsy. 

Huxley was born at home on June 11th 2014, after an uneventful (and what I consider empowering labour and delivery). He didn't give a big cry or 'pink up' like our midwives would have liked so the decision was made to transfer to the hospital. Huxley was delivered right up onto my chest and then was almost immediately given oxygen while still on me. You can imagine the overwhelming feelings of both fear and joy flying around the room. Our birth team remained very calm during the whole process. Huxley and hubby went first via ambulance to the hospital and I remained at home until I was able to be stitched up and transferred. 

A change of scenery: 

Once at the hospital Huxley was brought to the NICU (Neonatal Intensive Care Unit) where the team there tried to figure out what happened to him. I was not able to see Huxley until 5 hours after he was born. (I wasn't able to hold him for another 24hrs). Those were the longest hours of my life. When we saw Huxley all covered with wires hooked up to monitors he was very rigid and was screaming out. I sat there singing to him to try and make him feel safe. It wasn't until a few more hours that Huxley began to have seizures, it was too late for a 'cooling' treatment that can stop swelling of the brain and can stop further damage from occurring. The Dr's still didn't know why Huxley was having seizures. A few days later a neurologist ordered a MRI to help explain the seizure activity and to give us an idea about what was happening to Huxley. His tone was still abnormal and his suck and swallow was weak. I don't think I've ever cried so much in my life. I was in a perpetual state of shock all swollen and snotty. My poor amazing husband stayed so strong and that strength continues to propel me forward. My mum, doula, and best friend also need a 'shout out' because they sat with me day in and day out while I held my beautiful boy and tried to breastfeed him. I will be forever grateful to them, Oh man. The day the neurologist read out the MRI report out to us will be burned into my memory for forever. It was an awful day. She sat there and very clinically told us that our boys brain was damaged due to a lack of oxygen she suspects from intermittent cord compressions that happened some time during labour or maybe even during pregnancy. This was happening to our sweet angel and was totally undetected despite regular monitoring. A freaky thing that no one ever thinks will happen to them. 

So there it is. A diagnosis of hypoxic ischemic encephalopathy (which is a fancy way of saying that he lost oxygen and it caused damage to his brain), around two is when they would officially diagnose him with cerebral palsy. We were in denial for a while but we know its coming. Every day I get a little more comfortable with it. 

We spent 16 days in the NICU, Huxley went from a NG tube for feeds, to a bottle, and then eventually to the breast! That was an incredible day. After Huxley was able to take full feeds from me they let us take him home. Home to a world full of unanswered questions, fear, and excitement about the future. I was so stressed out that I broke out in a full body rash and my immune system took such a hit that I caught hand foot and mouth disease. Not. Fun. 

Fast forward: 

Huxley turned one two days ago! This has been a ridiculously challenging year. Huxley tries so hard everyday to sit, crawl, walk, and coordinate his hands. The damage is in the area of his brain that controls motor function. He is so determined, he's spunky, he's sweet. He's our amazing boy! He loves music, going for walks, he lights up a room with his smile. He's a little explorer of the world and we couldn't be more proud! 

Thanks for reading and stay tuned for more on our story and our adventure as it progresses :) 

xo