RSS

Miracles Really DO Happen…

…and the following story is living proof of the miraculous!

Those of you who follow my blog will know that we have been on quite the journey lately with regards to Jake, his breathing issues, his sleep study, and consequently his diagnosis of Obstructive Sleep Apnea (or OSA).  If you want to read more of the back story, you can find it in this post.  The take-away from those few weeks of craziness, doctors appointments, specialist appointments, etc… was a brand new CPAP machine.

If I may sound technical for a moment or two…

CPAP is short for “Continuous Positive Airway Pressure”.  Basically, the purpose of a CPAP machine is to use air pressure to keep Jake’s airways open at night, thus allowing him to be able to breathe, to be able to have a restful sleep, and to be able to ultimately experience the growth and development that he has been sorely lacking, due to the sleep apnea.

The CPAP machine works by forcing air pressure into Jake’s nose.  He wears a mask with a seal over his nose.  The mask is attached to a headpiece, that keeps the mask on and allows us to tighten it to ensure a good seal.  The mask is also attached to a giant hose, which connects to the actual machine.  The air is pressurized, humid, and warm, in order to be as easy on his lungs as possible.  This is what the mask looks like (sorry about the poor picture quality…):

 

IMG_3813

IMG_3810

If I may sound emotional for a moment or two…

The very first night we tried to put the CPAP on Jake, we had a success rate of about 3 hours.  Which apparently is amazing for the first time!  We waited until he was asleep.  We dragged his tired, restless little body out of his crib, fitted the mask gently onto his face and over his head, and turned on the pressure.  He resisted for a moment or two, but he was half-asleep, so the resistance was quickly overcome by exhaustion.  We picked him up, put him back in his bed, lying on his back, and waited…

I went in about 17 times during those 3 hours.  I watched with baited breath.  I opened up the flashlight app on my phone, and sat on the floor beside Jake’s crib, flashlight trained on his chest.  And as I sat there cross-legged on the ground, staring through the bars of the crib at my sleeping child, I wept.  I cried tears of joy as I watched Jake stay in one position for over an hour and a half (he is usually restless, because every time his airway closes, he subconsciously switches positions to try and open it).  I shed tears of happiness as I watched his chest rise and fall, rise and fall, rhythmically with each rise of his chest representing a deep, life-giving breath of air.

Oh the emotions I felt!  My child was breathing.  Was resting.  Was sleeping peacefully.  And was doing all of this for one of the first times of his life!

If I may describe the miracle, for a moment or two…

When we first got the CPAP machine, our Respiratory Therapist told us that it would be a long, hard journey.  She informed us that it takes most children a month or two just to get to the point where they can put on the mask and keep it on their face for a few minutes.  She made us aware that we were probably looking at a few months time before he would be wearing it at night with any sort of regularity.

We started getting Jake used to the mask by putting it on just before bed, while he was watching an episode of “Elmo’s World” (his favorite show in the world).  After a few nights, he seemed to be getting accustomed to it, so we proceeded to put the mask on and turn on the pressure.  He still seemed fine, so we decided to give it a try at night.

That first Monday night, as I described above, was amazing!  He wore it for 3 hours before he woke up and cried.  We were elated!  The following few nights he wore the CPAP anywhere from 1-3 hours a night, and we were thrilled.  And then, the miracle happened.  The 5th night of Jake wearing his CPAP machine, something clicked for him, and he wore it all. night. long.  And not only that, but he was worn it all night long EVERY NIGHT since!!

It’s not perfect.  We are still figuring out what setting will work best on him.  We are still waiting until he falls asleep to put it on.  He got his teeth into it one day and bit a chunk out of the gel that helps create the seal!  We still go in to check on him at night and occasionally find him sitting up, or in strange positions (classic signs of sleep apnea).  But the difference we have seen already is amazing.  He looks more rested.  He is gaining weight.  He naps less during the day, and has more energy.

So I stand by my assessment.  Miracles really DO happen!

 
4 Comments

Posted by on April 15, 2014 in Uncategorized

 

Tags: , , , , ,

Snippets and Stories…

I’ve been wanting to share a couple of stories coming out of World Down Syndrome Day (WDSD), but life has been crazy these past few weeks, and I am only just beginning to come up for air!  Who knew having 3 kids under the age of 3 could be so exhausting!!!

I do not think there are words to accurately describe the depth of emotion, the outpouring of love and support, and the sense of community and camaraderie that we feel on a daily basis from our family and friends, but that was especially felt this year on World Down Syndrome Day.  I could write a novel (albeit most likely not a best-seller, with my writing ability!!) and still not capture what I desire, so instead, I will let some of these pictures speak for themselves:

IMG_3630

My nephew Jonah (grade 2), also giving a presentation about WDSD and Jake in his class. Both these guys did an amazing job, and I was so proud of them!

IMG_3631

My nephew Elijah (grade 4), giving a presentation in his class about WDSD and about Jake. He was teaching his peers about respect and love, and he was amazing! (and all his classmates LOVED meeting Jake!)

WDSDYangs

My sister and her family, dressed in blue and yellow, celebrating with us!

WDSDPopowich

Curtis’ sister Shannon and her family:) My nephew Charlie (Kindergarten) also did a presentation in his class about WDSD and about how much he loves Jake. I couldn’t go and see him, but I heard his speech, and it rocked:) So proud of these guys for learning at such an early age how to be advocates!

 

As I said earlier, I could go on and on about how much we appreciate our friends and family, who love us unconditionally and go above and beyond to show us their unending love and support.  But as it is, I will leave it at this: THANK YOU so much for all you do for us.  It does not go unnoticed, and it is a huge blessing to our family.

Changing gears a little, I also wanted to show some snippets of our life in the past couple of weeks.  So, once again, I will let the pictures do the talking!

IMG_9450

Our precious new babe, Noah:)

IMG_9428

IMG_9376

IMG_9508

A glimpse of things to come, when it is warm and we can do this every day:)

IMG_9560

Thank goodness for rain boots!!

IMG_9547

The hazards of springtime at the park! How can you tell we live in Canada??!!

IMG_9503

The first semi-warm day we’ve had this year! So we had to go to the park:)

Happy Sunday to you all:)

 
1 Comment

Posted by on April 13, 2014 in Uncategorized

 

Tags: , , , , , ,

We Interrupt this Regularly Scheduled Program…

…To bring some great news!

We are happy to announce the addition of Noah Brooks to our ever-expanding family:)

IMG_3732

IMG_9338

Jake and Cole are the proud big brothers to baby Noah, our hearts are full, our nights are sleepless (!!), and we are so incredibly happy and content to welcome this new precious life into our family.  Jake even knows his name already (O-AH), and every time he cries, they both stop what they are doing, shout (or sign) “baby” and go looking for him!

Enough talk.  More pictures!!

IMG_9218

An hour old and already bonding with Daddy:)

IMG_9292

IMG_9285

IMG_9268

IMG_9259

 
3 Comments

Posted by on March 29, 2014 in Uncategorized

 

Tags: , , ,

Oh Happy Day…!!

Happy World Down Syndrome Day!

We feel blessed beyond measure today, as we stop and evaluate our lives, our family, and the blessing that Jake has been to us.  3 years ago, as we were eagerly anticipating the arrival of Jake, our firstborn son, we had no idea what kind of story was about to unfold for us.  Today, almost 3 years later, I can honestly say that while the journey has looked much different than we had originally anticipated it, we would not change it for the world!

In the lead-up to today, I asked for some help!
I was hoping to be able to capture a picture, using words, that would cause people to have a better glimpse into the personality and character of our son.  The response I got was overwhelming, so thank you, thank you, thank you for your input!

The word picture works in the following way: when you put all your text in, the picture that is generated is based on the number of times that certain words were used.  The more times they were used as descriptions, the bigger the words appear in the picture.  So as you can see below, the word “Jake” was the most used word, and so appears as the largest.  I love this concept though, because while all of the words in the picture were used multiple times, you can see the ones that really stand out, such as “love” and “joy”. What a testament to the impact that Jake is having on those around him!

WDSDWordCloud2
A couple of phrases stuck out for me as well, that I wanted to share:

“…Jake has captured my heart and forever changed who I am…”

“…He is a child who loves life, lives for his family and most of all shows ME how to understand difference and love it…”

“…Jake has that special ability to bring people together and light up a room when he is around…”

“…Jake is a regular old kid.  He plays, he laughs, he picks on his brother, and he gets into trouble.  Jake is resilient.  He is charming and charismatic and sometimes stubborn…”

“…He has more strength and determination then any one I know…”

“…The way he approaches life, play, people, amazes me. He is joy…”

“…Jake is unconditional love.  He is unpretentious, genuine and unrestrained in his expressions of love…”

So today, as we celebrate World Down Syndrome Day, and the life of my oldest son Jake, let’s wear blue and yellow and stand in solidarity.  Let’s celebrate our similarities, the things that draw us together regardless of who we are, where we are from, or how many chromosomes we possess.  Let’s concentrate on the things that bind us together as humanity and allow us to cultivate mutual respect, acceptance, and love for all.

IMG_9120

IMG_9131

 
1 Comment

Posted by on March 21, 2014 in Uncategorized

 

Tags: , , , , , , , ,

Blue, Yellow, and Special Guests…

Last year on March 21 (World Down Syndrome Day), my oldest nephews Elijah (9 years) and Jonah (7 years) shared about Jake in their class at school.  They talked a little bit about Down syndrome, and showed their class a picture of Jake, explaining who he was and why they loved him so much (you can read my post about it in my post from last year about Raising Awareness).  It was a great opportunity for them to teach their peers about inclusion, acceptance, and love.

Fast forward to this year.  With no prompting whatsoever, they were already asking me at the beginning of March when WDSD was, and if they could do another presentation in their classes!  This year, however, they wanted to do more than a presentation.  They wanted to be able to give their classmates not only information, but also an experience.

We decided that there were two great ways to do this!

The first way that we came up with was to tap into the current fad of the “Rainbow Loom”, and make blue and yellow bracelets (the official WDSD colors), one for every kid in their class!!  They thought this would be a great way to give their classmates something that they could take home and have as a memory of WDSD.  What a great idea!!

The second way we came up with was that we thought it would be fun to be able to introduce their classmates to Jake in person!  With permission from both of their schools, Jake and I will be joining them in their classes this coming Wednesday, March 19 (they are on March Break on the 21st, so we had to do it early!!).  We will cheer them on as they proudly do their presentations, and as they have a chance to “show off” their cousin, who they adore!

It is stories like this, of raising awareness, teaching about acceptance, love, respect, and inclusion, that get me excited!  I would LOVE to hear more stories like this, so if you have any from your own experiences, please send them my way:)

IMG_3612

Elijah (left) and Jonah (right) with the blue and yellow bracelets they’ve already made for their classmates for WDSD!

Also, two quick reminders for you, coming out of my last post (which you can read here):

The first is to help me create a word cloud for Jake, by submitting your short description of who Jake is, and/or what Jake means to you.
The more descriptions I get, the better the word cloud describing Jake will be!  So please get them in to me by Thursday, March 20 at the latest, so that I can post the finished product on WDSD.

The second is just a reminder that on Friday, March 21 (WDSD) we are wearing blue and yellow in support of Jake!  Please join us if you can, and send me a picture to stand in solidarity with us!

IMG_3610

A preview of the blue and yellow (and stylin’) outfits my boys will be sporting to celebrate WDSD!

 
Leave a comment

Posted by on March 17, 2014 in Uncategorized

 

Tags: , , , , , , , ,

World Down Syndrome Day 2014 (WDSD)…

World Down Syndrome Day 2014 (WDSD) is quickly approaching.

This is a day to celebrate those individuals, such as my son Jake, who were born with an extra chromosome.  It is a day to raise awareness of what life looks like for someone with Down syndrome.  It is a day for our family and friends to be able to celebrate Jake’s life.

WDSD is on March 21.  This date was chosen with purpose:

Down syndrome is also known as Trisomy 21.
Trisomy 21 is 3 copies of the 21st chromosome.
Hence 3/21 = March 21 = World Down Syndrome Day!

Last year for WDSD, we joined in with the “Lots of Socks” campaign put on by www.worlddownsyndromeday.org.  We asked our friends and families to wear crazy socks, in order to raise awareness and to show solidarity with us in supporting Jake.  It was, in my mind, a huge success!  (If you want to read more about it, you can look here, here, or here)

This year we’d like to do something different.  Two things, actually.

The first is easy…
The official colors for WDSD are BLUE and YELLOW.
Would you consider standing in solidarity and support with us on Friday, March 21 in recognition of Jake and so many others like him who have been blessed with an extra chromosome?  All you have to do is wear blue and yellow, and send me a picture!

The second is also simple…
I would like to be able to create a picture of who Jake is, for those who don’t know him or don’t have exposure to individuals with Down syndrome.
A word picture.
Something that I can post on my blog on World Down Syndrome Day, and that I can share on social media.
Something that causes people to stop and reflect on the intersection of their preconceived perceptions of someone with Down syndrome as compared to the words being used to describe an individual with Down syndrome.
Something that will cause people to have a better glimpse into the personality and character of my son.

In order for this to work, however, I need your help!!

I need as many people as possible to give their input.
I would love it if you could send me a short description (3-5 sentences) of who Jake is and/or what he means to you.

I would love to post the word picture on WDSD however, so I would need to receive your contributions by Thursday, March 20.

You can contribute your thoughts, as well as sending me pictures of you wearing blue and yellow, in any of the following ways:
- Leave a comment on this blog post
- Instagram: @karynmslater
- Twitter: @karynmslater
- Facebook (Karyn Slater)
- Email: if you don’t have my email address already, post a comment on my “A Little of This” page, and I’ll send you an email!

I know this is a different approach to raising awareness on WDSD, but my hope is that this word picture will allow people who do know Jake to develop a new appreciation of how others perceive him, and that people who don’t know Jake will be challenged to think differently about people with disabilities, thus raising awareness!

Won’t you please join with me in raising awareness, in showing the world a picture of who Jake is, and in wearing blue and yellow on March 21 to stand in solidarity with my family and so many others?  Thank you, thank you, thank you!!

IMG_3526

IMG_3538

IMG_3546

 
4 Comments

Posted by on March 13, 2014 in Uncategorized

 

Tags: , , , , , , ,

When IS He Breathing?…

In a conversation with our Respirologist yesterday, as we were discussing the results of Jake’s recent sleep study, she posed the question to me, “So, when IS he breathing?”.  My heart sunk.  After all, hearing a doctor say this to you is never good news.

Let me back up a few days, and explain where she was coming from, and where we are headed from here!

A few days ago, we had a sleep study for Jake.  For the sake of those who don’t know what a sleep study entails, here are the gory details: you take your child to the hospital, to “sleep”.  They hook your child up to a million monitors (okay, I think it was actually about 35, but it felt like a million!).  Your child has wires, probes, tubing, stickers, monitors, etc… hooked up all over his tiny little body.  To the point where you can hardly recognize that it is your child.  Then they turn off all the lights, leave the room to monitor him from another room, and you are left with a very distraught, very uncomfortable, very sleep-deprived child (because by the time they are done hooking up the monitors it is two hours past his bedtime) that you can’t pick up and rock to sleep because the wires don’t reach far enough.  So, you fight your hardest to help him get comfortable and go to sleep, which happens around 11pm.  Then, after a very restless sleep, in which the techs come in about 47 times to adjust wires, they come in and wake you up at 6:00am, and kick you out!

The purpose of the sleep study was to get an idea of Jake’s sleeping habits, and to be able to confirm an official diagnosis of obstructive sleep apnea, or OSA, (which we were pretty sure that Jake had).  With this official confirmation, and the information passed on from the sleep lab, we hope to be able to create a plan going forward for how we can remedy this.

At the end of your study at the sleep clinic, they tell you that it could take up to 4 months to hear the results of the test.

I heard back from the doctor yesterday.  Four. Days. Later.  Not 4 months.  4 days.  That is never good news.

The sleep study gives lots of information.  But at the end of the study, they assign a number, called the “Apnea-Hypopnea Index” (AHI).  Put very simply, this number represents the number of times that the individual stops breathing in one hour.  According to our Respirologist, anything over 10 they would consider to be classified as severe sleep apnea for someone like Jake.

Jake’s number was 94.

This basically means that every 45 seconds or less Jake stops breathing.  All. Night. Long.  It was as our Respirologist was explaining this number to me that she stopped to add, “in light of this information, my question is ‘when IS he breathing?’”.

At this point, you can cue the tears.  And the heartbreak that came with the realization that Jake is much more severe than we originally thought.  And the grief that my not-yet-3-year-old has something else to deal with.  And the frustration that rears its ugly head every time we encounter more hurdles with Jake.  I am disheartened.

Don’t get me wrong, I am also thankful.  Thankful that we advocated (read between the lines: pushed very hard!) to get this done sooner than later.  Thankful that there is a solution – something called a CPAP machine (more about this later).  Thankful that modern medicine has given us effective coping strategies, and thankful that we caught it early, and now we can move towards a solution that will help Jake grow and develop at a more optimal level than he has been.

There is much to be thankful for.  But when a doctor questions when / if your child is breathing at night, you can take a few moments to grieve.

And this pretty much sums up how I feel about this new turn of events!!

IMG_9044

 
4 Comments

Posted by on March 7, 2014 in Uncategorized

 

Tags: , , , , , ,

 
Follow

Get every new post delivered to your Inbox.

Join 638 other followers

%d bloggers like this: