The dark days are mostly behind us..

Hello dear family and friends

I missed posting last week because it was a zoo at work but today is a grey day and its causing the street to be quiet. 

There's our boy all snug as a bug in his little bed in the NICU. 

Having a baby in general is an incredible journey and many mothers feel a surge of emotions a few days after the baby is born (it usually coincides with milk coming in) and not all of those emotions feel good. I feel that it is so important to spread awareness as a doula and a mother that having a baby is an exciting time but its okay if it also feels bad. 

After Huxley was born I was in shock and a constant state of fight or flight. Everyday that I sat with him in NICU I tried to 'pull up my socks' and be the bravest I could be. Hux was about four months old when I felt like I just couldn't be brave anymore. I needed help. I was so fortunate to be referred to an amazing clinical counselor  named Traci McGee. Here's a blurb from her website: 

Typically, mothers access the Post Partum Support Program by a referral from a public health nurse, physician, midwife, social worker or an agency that is part of the Greater Victoria health community. The Post Partum Support Program is sponsored by the Vancouver Island Health Authority (Island Health).

It is an amazing free service available for mamas in need in the Greater Victoria area. 

The two things in these sessions that I felt helped the most: 

1) It is okay to feel the way I was feeling. It is odd but sometimes as humans we just need permission to feel vulnerable and afraid. 

2) I needed to find my tribe. (My words not hers haha). I was a part of several new baby groups but unless you have a child with special needs you can't fully understand what its like. I needed to find people like me that had children like Huxley! I don't know why I didn't think about it myself but that simple suggestion from Traci guided me to the biggest support we have. 

HOPE FOR HIE

The link above is the foundations page but the Facebook forum which has a 1000+ members that all have children like Huxley has been an incredible resource and place of refuge. The moment I joined the group and started reading the posts I felt a big wave of relief wash over me. The children described were Huxley. Finally I wasn't alone anymore. 

We are SO lucky to be living in this age of social media. I cannot imagine how trying it would have been to have Huxley in the years before the internet and social media. 

Whatever your struggle is, I'm certain there is a group out there waiting to meet you. It is okay to be vulnerable and it is okay to seek help.  

Our days are filled with love, hope, and so many hugs. Sometimes the darkness creeps back up but one smile from our beautiful boy and it all melts away. 

That's all for now folks, so much love. 

Inchstone Update :)

Hi Everyone :)

My amazing attentive and determined hubby has been working a lot with Huxley to get him comfy with the 'Tomato Chair' and here's a VIDEO to show you how its working!

Sitting and eating!

He ate macaroni and cheese like a big kid!!

Happy in his chair!

Sitting with mama!

Happy boy working hard :) So proud of my hubby and his dedication to Huxley.

xo. 

Sometimes pharmaceuticals have their place. .

Hi all :)

For those who know us, know that Matty and I are not big on taking 'pills' for every little ache and pain that comes our way. I mean I gave birth to Huxley without any medication for goodness sakes but definitely took a full round of pain relief after! Obviously medication is needed sometimes and we've got to be thankful that we have plenty of access to whatever we need. I think that when we thought about having children we thought that they by no means would ever 'suffer' but that maybe they would adopt our philosophy of conscious medicating. However, life had other plans and Huxley has been prescribed a medication to calm his tight muscles caused by his high tone. Personally, this made me feel pretty uncomfortable and a little sad that he might need to take a pill(s) daily for one reason or another but its just one more thing to let go of and move on. 

When Huxley first had seizures in the NICU he was put on Phenobarbital, a very popularly used anti-seizure medication. The day he was weaned off we were overjoyed/nervous and 'knock on wood' but we haven't had any seizures return. 

Now Huxley is on a medication called 'Baclofen' and it took a little while to play with correct dosage, but since being on it we've seen him spend longer periods of time alone on his back playing on the floor, we've seen him comfortably sit crossed legged with support, he's been guiding spoonfuls of baby food up to his mouth with minimal assistance, and his hands have been much more relaxed. 

Amazing. 

Happy that our boy is feeling more comfortable in his body :) 

<3

All of the Tools..

Our house is slowly being overrun by tools and adaptive equipment for Mr. Huxley. We are SO lucky to have an amazing team of therapists from a centre here in Victoria called 'Queen Alexandra Centre for Children's Health.' They have an equipment lending service which has provided us with an abundance of things to try out with Huxley. I think about what it would cost us if this service wasn't available and it just makes me shudder. 

It started out slow.. 

At first we were given a giant mirror to distract Huxley and to help us to be able to monitor his body alignment while we played. 

You can see the awesome mirror there on the left (good for checking push up alignment too haha)


Then we were given a few toys which Hux still loves to play with: a switch toy and a sensory ball. 

That big yellow ball is the sensory ball :)

Gradually as we learned that Huxley was going to need support to experience different body positions, bigger pieces of equipment started to fill our house. 

This piece of equipment is called a "Tadpole" It can help Huxley find support in a multitude of different positions, he's practicing 'posting up' in this picture :)

Sometimes children with 'high tone' tend to stand right up on their tippy toes when placed in a standing position. People often say 'Wow, Huxley is so strong' (and yes in a lot of ways he is) but, he sometimes uses his high muscle tone too much and standing on tippy toes is not only hard on the toes but his calfs and hamstrings may get overly tight if he continues to practice standing in that way. A piece of equipment that is used to help children stand properly and enjoy being upright to play is something called a 'stander.' Here's Huxley thoroughly enjoying some independent play :)

QA didn't lend us the big body pillow pictured bellow but lately we've been using it to help support Huxley on his tummy and on his back. He seems to be enjoying it :) 

In a previous post I talked about this little chair called the 'tomato chair' (weird names right?) it is a supportive seating system that we hope Huxley will become comfortable with over time. QA has brought in several different seating options and so far the tomato chair has worked the best. 

Check out this neat band around Huxleys hand, it helps him to grip and hang onto a spoon. He is SO interested in feeding himself. Lately Hux has had great success bringing food towards his mouth or guiding our hands to do so. This kid is determined. I couldn't be more proud.

As many of you know, Huxley is yet to be mobile and is pretty uncomfortable being left on his back or tummy on the floor for too long. Huxley is also not able to go in a stroller and his car seat has become unsafe (long story). SO we carry him a lot. I feel so thankful that carriers exist, my favourite is a woven wrap and below I've put together a compilation of all the different ones I've had the pleasure of wearing :) (Big shout out to my lovely neighbour Sarah across the street for giving me the opportunity to wear so many different ones!!) I will always have a woven wrap because they are sturdy and hug Huxley in which makes him feel very secure and happy but the time is coming that we are going to need to put him on our backs in a supportive carrier. I'm on the hunt for one that has a high back so that his neck can be comfortably supported. If you have any thoughts or suggestions on a carrier that would work well for us please share! 

It is with a heavy heart that I have accepted equipment for Huxley into our home. I am SO glad that they exist and that we have access but it doesn't make it any easier and you truly never think that your child will need support in every aspect of their life. 

Big Sigh. 

Moving on. 

As always, from the bottom of our hearts, thank you for reading about our journey

xo.

An Inchstone post!

Hamming it up with Dad!

Sometimes in special needs parenting groups, inchstones are more often celebrated then milestones. If you aren't sure what milestones are, here is googles description: 

1. Developmental milestones are behaviors or physical skills seen in infants and children as they grow and develop. Rolling over, crawling, walking, and talking are all considered milestones. The milestones are different for each age range.

I realized that although informational, some of the previous posts have been a little dreary... So for this post I thought that I would share with you some of Huxleys inchstones!

Inchstone #1/2/3! Lately Hux has been bringing his hands to his mouth more often and reaching towards the spoon when we feed him :) He's becoming more tolerable on his back, and this week he has rolled from back to front 5 times!

Here's inchstone #4, Huxley has a new chair that he is practicing sitting in daily. He's slowly getting more comfortable. This is huge.

 Inchstone #5! Look at how relaxed Huxleys hand is. Huxley 'fists' his hands a lot but more and more we've been able to see and feel his relaxed hands touching us. It's beautiful. 

Inchstone #6! Huxley graduated from Music/Occupational Therapy camp :) It was such a blast and Huxley learned a lot! Thanks so much to Victoria Conservatory for putting on this free camp for children with special needs. Huxley strummed guitars, played the drums, socialized with other kiddos, enjoyed the songs, and loved parachute play! In two weeks we will be attending Music/Speech therapy camp. We're excited <3 That's all for now folks! Thanks for all of your support xoxo

Fattening mission

Hey all :)

Let's talk food

Here's Hux with his first food on his face at 5.5 months old, Banana! 

In my last post I was describing the challenges that we face surrounding Huxley's high tone. Tone challenges is a characteristic of cerebral palsy. Tone challenges can make gaining weight very hard on people with cerebral palsy. 

With 'low tone' people may have troubles coordinating suck and swallow reflexes. Feeding was the main reason for our extended stay at the NICU but we were able to leave the hospital with Huxley happily breastfeeding (thankfully). 

As I described in the previous post, Huxley has 'mixed tone' but his 'high tone' is what causes the most grief. Huxley is actively moving throughout the day, there are only few moments in each day that he is fully still. When Huxley gets excited, when he's concentrating, or when he's upset, his muscles contract. What this looks like is his fists clench, toes curl, and his body can go rigid. Huxley's attempts to function in his daily life takes so much more effort then a neuro typical (NT) child. Huxley's injury has caused a disconnect between what he wants to do and coordination of his body parts to achieve that want. Instead of reaching to grasp something, Huxley swings his arm several times (although it is getting much better) to reach for what he wants. All of this extra movement and the extra contractions of his muscles burns a lot of calories. We've been very lucky up until this point with Huxley's weight gain. Hux is still gaining weight but just slowly and at his last pediatricians appointment he dipped below the percentile scale. We don't want Hux to lose any weight so we are going to be adding as many 'fattening' foods to his diet as we can! 

Here's a list of fat building foods for little ones :)

Whole milk

Whole yogurt

Cheese

Banana

Avocado

Sweet potato

Eggs

Potato

Butter

Peanut butter

Olive oil

Hummus

Guacamole

Cottage cheese

Beans

Cream cheese

Honey

Let's hope we can fatten up this boy! He certainly loves his food. We are still mostly giving Huxley blended food but he does pretty well with bites of food too :) 

Beets at 11 months!

I'm working on a big post that will show Hux using all of the equipment that we have for him but it's going to take a while to take all of the pictures. Stay tuned! 

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 :)