Friday, July 21, 2017

Sunshine and Wildflowers and Ultrasound-Guided Botox Injections


Life with our little ones is a constant adventure. Everything we do with them feels special and celebratory and I wish that I could share all of our experiences here in this little space of mine. It is challenging sometimes, not being able to talk about our littlest two, or to share photos of them here, but I understand why the rules are in place. As I've said before, while I share updates about Brennen and Andrew and I, know that there are two other sweet babes in on all of our adventures.. and we've been busy! We have been camping, swimming, canoeing and hiking. We have been participating in the Summer Reading Club at our local library (blog post on that coming soon!), and we have several events coming up that we are really looking forward to. We are loving our life as a family of five, and I will try to keep you guys up to speed, sharing here as much as I possibly can.

We have been making the most of this beautiful Summer weather, enjoying a good balance of days where there is no hurry to be anywhere, and other days that are full of scheduled activities and appointments. Between the three children, there is an abundance of medical appointments and it can feel all-consuming at times, like our entire life revolves around hospitals, health issues and constant worry. The Janeway has been a second home for our family, and while we would prefer not to spend so much time there, we have been fortunate to receive such great care for all of our kiddos.

Brennen has been doing well these past few months since his back surgery. He sits up super straight and is more comfortable in his wheelchair than he ever has been. Actually, we had his chair modified recently, taking out all of the foam-in-place support that he once needed and fitting him with just a flat back with laterals. He looks so good sitting up in his chair, we would like to think that our issues with him have resolved, but there still seems to be something not quite right. He has had some big seizures recently that have scared the heck out of us, and we actually ended up taking him in to Emergency one day last week because his breathing was not the greatest. This boy is keeping us on our toes, that's for sure.


Another seemingly ongoing issue (very common with CP) is his tone and spasticity. His legs are now pulling to the right in sort of a 'windswept' way. It has become difficult to change him and to get him into a seated position, and so we talked with our orthopedic surgeon about botox injections.

Brennen has had botox several times in the past, but always under general anesthetic in the OR. It has been a few years since his last botox treatment because we've been busy with the big stuff - like his hip surgery and recent spinal fusion, but his leg muscles have been really tight lately, and it was time for some intervention.

On Wednesday, Brennen had ultrasound-guided botox injections in his left leg and hip. This was our first experience with the ultrasound guidance, and I have to say that I went into it not really knowing what to expect, but the procedure was fascinating to watch! The whole thing took just about 20 minutes, and we were able to see the liquid toxin disperse throughout the muscles and start to work it's magic. The ultrasound is non-invasive and allows for continuous monitoring of the needle position, avoiding blood vessels and nerves, which results in a safe and precise injection.

Botox (botulinum toxin A) inhibits muscle contraction by preventing the release of acetylcholine and blocking the chemical signal between nerves and muscles that makes the muscle contract or tighten. Botox injections considerably reduce the discomfort associated with spasticity, and the results are almost immediate. We noticed a significant difference in Brennen's tone and range of motion that same night. Brennen didn't have any adverse reaction to the injections, and we were thrilled with how quickly we saw results. Brennen is the perfect candidate for botox treatments, and ultrasound guidance is absolutely the way to go for him. I joked with Andrew that any procedure after his back surgery will seem super minor, because really, comparatively it is.. but I know I shouldn't say that too loud because we never know what might be facing us around the next corner. We take things day by day around here, and today is a good day!

Brennen has to have serial casting on his left foot starting next week, so I will keep you posted on that!

Happy Summer!



Friday, July 14, 2017

You've Got Me and I've Got You

Some days are tough. I feel like, on this journey, every day another little piece of my heart breaks as I witness Brennen's daily struggles, but at the end of the day, I am reminded of the strength of his spirit and it seems like a constant miracle.


I want to share a poem that I came across recently on another special needs site. I have searched and tried to find the author, to thank her for so eloquently expressing exactly what I think and feel, but a name is not listed. I believe that many of us 'Special Needs Moms' can relate to these words, and I want to prepare you for the strength with which they will hit you right in your heart and soul. It hurts, but I know that sometimes your heart needs to be broken in order to be fully open.

*****

You miss the things I haven't done,
the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.

In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see, the child that I may never be.
Not so able, tough or agile, often tired and much more fragile.

You see the tears I've often cried, and cried them with me, side by side.
Your heart is heavy for my trials, but you wear it well,
with weathered smiles.

I know that you know, I am enough.
But I know the bad days can be tough.
You thank the World for giving me to you,
but you're sad for all I cannot do,
and not because you feel let down my me,
but you can't help wonder how I'd be
if I could do what others do,
like ride a bike or run to you.

You think of all the things I'll miss
first dance, first love,
first date, first kiss.
Yet here I am, as I should be,
not missing out on being me.

Do not fret or worry so
and make your spirit tired with woe.
And when those nights are feeling longer,
lean on me until you're stronger.

Hold my little hand in yours,
peacefully we'll pass the hours.
For all we have is one another,
special child and care worn mother.

Nothing matters more you see,
than seeing all the life in me.
I don't need to be able to
do the things that others do.

See the words I do not say,
in the smiles I give you everyday.
When I'm tired let me rest,
with my little head against your chest
and for that moment in that peace,
let your loving worries cease.

Look at what I can achieve,
and celebrate me, do not grieve.
Please do not be sad because,
I'm not the child I never was.

Different isn't less you know,
and you're the one who told me so.

And some days will be hard to take,
and you'll feel as though your heart might break.
But we'll bounce back,
we always do.
Because you've got me and I've got you.

--Author Unknown

Wednesday, July 5, 2017

10 Tips for Parents of Children with Physical Disabilities

I was asked to write a list of "10 Tips for Parents who have Children with Physical Disabilities", so I went back through some of my previous posts to find the messages that I feel are most important. These are the few that really stuck out for me, and I hope they will resonate with you as well!

Tip #1 - It takes strength and courage to raise a child with a physical disability... but you can do it! It is an enormous responsibility, yes, but the challenges are far outweighed by the joy your child will bring into your life.

Tip # 2 - Focus on your child's strengths. Put emphasis on what your child can do, instead of what they cannot do. They may do things a little differently, but that's ok! Be open to your child doing things in a way that feels most comfortable to them.

Tip #3 - Remember these important F-Words: In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter published a paper titled: "The 'F-words' in Childhood Disability: I swear this is how we should think!" The paper features six 'F-words' that the authors claim should be the focus in childhood disability. They believe, as I do, that we need to move away from the concept of “fixing” disabilities and focus instead on Function, Family, Fitness, Fun, Friends and the Future!

Tip #4 - Don't sweat the small stuff. You will realize soon enough that there are plenty of things you have to fight for, so you are going to want to pick your battles. Avoid any unnecessary arguments and save your energy for when you really need it. Remember, you have a limited amount of time and patience, and you can't afford to blow it on stuff that doesn't really matter. Equal treatment and inclusion? Totally worth fighting for. A few toys left around the house? Not so much.

Tip #5 - Take care of yourself! While your life may be consumed with meeting the needs of your child, it is important to recognize the need to look after yourself as well. Having a strong support network and taking time to do the things that make you happy are necessities when faced with the complex and challenging yet immeasurably rewarding job of raising a child with a disability. Feed your soul. Put on your own oxygen mask first before assisting someone else. Those flight attendants know what they're talking about!

Tip #6 - Find your tribe. Connect with other parents and families who are facing similar challenges. As a parent of a child with a physical disability, I know how important it is to connect with others who can relate to what you are going through. No one truly understands the physical, emotional, social and practical challenges of parenting a child with special needs better than another parent.

Tip #7 - Let your child be your teacher. There is so much that we can learn from people with disabilities. They teach us to slow down and appreciate the little things. They teach us about compassion, joy, and unconditional love. They teach us that sometimes life doesn't go exactly as planned, but that it can end up being even greater than we could have imagined!

Tip #8 - You are the expert on your child. No one knows your child better than you do, so while reading a medical file may tell you about their disability, it does not give a complete picture of your child as a whole person. As their parent, you are able to provide real-life insight on how their diagnosis affects their day to day life. I hope that parents feel empowered with this knowledge, and feel comfortable expressing their thoughts and feelings to health care professionals.

Tip #9 - Some days will be hard. Really hard. But you will get through it. I won't deny that I do struggle and it does hurt sometimes, seeing my child go through all that he has had to go through because of his disability. It is hard for a parent to accept. But whatever pain I have felt is far surpassed by the joy of each moment I spend with my son.

Tip #10 - Focus on the positive, and think of all the things you are thankful for. Life may not be going the way you had planned, but that doesn’t mean it can’t be awesome! Find happiness in your child, and that will get you through anything!


This article also appears on yoocan.com - the global empowerment site for people with disabilities.

Monday, July 3, 2017

Hunting for Gnome Homes


This year, the MUN Botanical Garden is celebrating its 40th birthday! To mark the occasion, there are 40 gnomes (and gnome homes) hidden throughout the garden. Apparently, they have been living in the park this whole time, but were too shy to come out!

Garden gnomes are funny things. There are many myths and stories about them, some saying that they have magical powers to heal people, or to be the guardians of underground treasure. They generally hide in the bushes in neighbourhood gardens, but have been known to take trips around the world and take selfies of themselves in all sorts of interesting places.

Andrew and I took Brennen out on a search for the gnome homes in the MUN Botanical Garden, and we found all 40!
Here are the photos to prove it.  ;)

(This one was super sneaky!)


I can't believe the detail that went into some of them! There is even a gnome home floating in the pond!


We had so much fun searching the Garden for the little gnomes and their funky homes! You guys seriously need to do this! It's super fun for kids (and adults!), and the trails are wheelchair and stroller friendly. The gnomes will be sticking around all Summer, so get out there and find them!


 We love visiting the Botanical Garden here in St. John's. Our family has a season pass, because we like to visit often!
Check out our previous adventures at MUN Botanical Garden HERE and HERE!