Well we just got home from 9 glorious days of sun, sand and ocean in the Mayan Riviera! Our skin is sun kissed, our bodies rested, and our hearts are full. We couldn’t have asked for a better vacation!
After our ‘shitty’ trip to Florida in the spring we were both VERY hesitant and nervous to take Jaxson on another holiday. Especially one out of north america. I packed SO much ‘just in case’ stuff for Jaxson that he got an entire suitcase to himself. What if he got an ear infection? What if he got thrush from taking the antibiotics we got filled to give him if said ear infection arrises? What if this congestion he’s been battling gets worse and settles in his chest? What if he gets backed-up? What if poops his face off? What if he gets a rash? What if he doesn’t eat the food there? I HAD IT ALL COVERED!!!
After a long travel day, we finally arrived at our resort and were ready to get into full vacation mode. Our days were all the same and blurred together. Which is just what we wanted! Baby woke us up at sunrise, we saved beach chairs, went for breakfast, hit the beach, gave Jax his bottle, stuck him in the tula, walked the beach as he had his morning nap, played in sand, floated in the water, moseyed on up to the snack shack for lunch, back to the beach to play in the sand and float, back to the room for showers, afternoon bottle and nap, get ready, go have a drink in the lobby, supper, back to room for bedtime snugs, bottle, CPAP, sleep for baby, a beer and snacks for moms, bedtime for the stragglers. REPEAT, EVERYDAY!
The resort we stayed at was beautiful, clean, nice beach, good food (although by the end of the trip we were totally sick of it), amazing staff and all around a great experience.
Of course in true Jaxson style he made MANY MANY friends! Jax was seriously in his version of heaven. A typical meal time for Jaxson consisted of a tray full of untouched food while he had himself turned 90 degrees in his highchair to grab everyones attention. he would wave at passers by, grab the staff as they came to refill our drinks, and if for some absurd reason a table close by was not paying full attention to him, he would ‘talk’ very loudly AT them to get their attention.
Throughout the week we were able to have many wonderful conversations about Down syndrome with our new friends Jaxson made for us. We met on a couple different occasions retired special education teachers. Which was so neat to be able to talk about Jaxson, development and his future with people who have first hand experience. Halfway through the week we met a French Canadian woman who has a daughter with Ds who came to their family at the age of 13 as a foster child. She is now in her early 20’s ❤
The absolute highlight of our vacation was the chance to meet our Instagram friends (@rafigrowsinbrooklyn) from NYC! We have followed each other since Rafi was only a few weeks old, and I have always felt a different kind of connection to this family. So when we by chance figured out we would all be vacationing in the same vicinity at the exact same time there was no question that we would be meeting! Enrica, Jake and Rafi made the one and a half hour trek from Cancun down to our resort and spent the day with us.
IT WAS AWESOME! I LOVE meeting other Ds families, and this amazing little family was everything and more. Let’s start with 8 month old Rafi. He is the absolute cutest, sweetest, most lovable little bug ever! His eyes melt me. His buddha belly gives me urges to blow raspberries. And his soul, his soul is just so perfect. Holding another baby with Down syndrome just takes my emotions to a whole new level. There’s just something different, magical, more special and calming about it. Meeting Rafi was just so good for my soul!!
Let’s move on from the star of the show and talk about those people who gave him life 😛 Rafi’s parents Jake and Enrica are our soul mates. Within 10 minutes of meeting we discovered that we have both spent some time in the exact same small little unknown surfing village in Costa Rica. That sealed the deal for us and at that exact moment we knew they were the coolest people ever! We all got along marvellously. It was so neat to hear about their fast paced NYC life, life with Rafi, and to hear about their own personal journey with Down syndrome. At one point Jake was making a comparison from a child with Ds to a typical child and used the term “ordinary kid”. I seriously love that term so much and think it’s the funniest thing ever! Enrica tells Jake he has to quit using it because he’s going to offend people, but I just can’t get enough of it. HAHAHA!
It was a wonderful day seeing the boys interact and play together. The sand always makes for an interesting time with 2 babies who put everything in their mouth and rub their eyes! Jaxson made Rafi cry a couple of times by pulling his hair (poor Rafi!). But all in all they had a lot of fun together.
We can’t wait until the next time we get to hang out with this awesome little family. Hopefully it will be in their neck of the woods as I’ve been itching to get Alex to NYC for a while now.
As with all good things, it must come to an end. As much as we loved every second of our vacation, it was nice to be home, in our own beds and eating our ‘normal’ food.
And for the record, we didn’t need to use any of things from the ‘just in case’ med stash! YAHOO!!!!
Last year when Jaxson was in the hospital with bronchiolitis I was sitting with him one afternoon, rocking with him while he slept. Some random nurse (I assume?) came into his room, stood there for a second then said “awwww….. look at him….. but you should really put him down. You’re creating a monster.” and walked out. HUH!? Seriously, it happened exactly like that.
Well over the year, somewhat out of greedily wanting baby snugs, and mostly out of pure necessity, we created a ‘monster’! Yes, our year and a half old ‘baby’ gets rocked to sleep and held for his naps.
Prior to his sleep apnea diagnosis the only way he would stay sleeping for his naps was if he was being held. Falling asleep on his own? Totally out of the question! He would never…. So a ‘monster’ was born and 90% of the time it’s amazing.
Mornings are my absolute favourite times with said monster. Our mornings are slow and easy. After we wake up, play, eat breakfast and play some more, Monster starts rubbing his eyes and ‘pancaking’ on the floor. I know it’s now time to nap poor, tired Monster. So I brew my coffee, warm a couple muffins up, make a bottle and rock that little tired Monster to sleep. As his breathing slows and deepens, as the suckie falls out of his mouth, I get to take my first sip of coffee for the day and just sit. I get to sit, relax, drink coffee, think, and just be. For exactly 40 minutes (because Monster has an impeccable internal clock!) every morning, I am tied down by a snuggly, warm, sleeping Monster before our day actually begins. I have no choice but to soak in every single second of having nothing at all to do, and it is wonderful!
This is why if you ever see us out of the house before 10:30 it’s a miracle! I schedule nothing prior to this time because mornings with Monster are the best.
Now that we have CPAP and Monster is fully transitioned to wearing it, he wears it for his afternoon nap (because morning naps are short and he’s almost phasing himself out of them). For the last month, 86.3% of the time Monster will actually be PUT DOWN (yes) for his afternoon nap. I must admit that it is nice to have the option to tidy the house, get started on dins, do a little baking etc while Monster is sleeping. But there are still plenty afternoons, even when Monster is put down, I’ll lay down beside him, hold his hand, and take a nap with Monster snoring beside me.
So while the house will still be messy, we will be eating a late dinner again, and those cookies are on hold for another day. I will once again be slowing down while I rock sleeping Monster and enjoy my coffee and getting lost in thought. After all, it’s easy to cater to Monster because he’s the only one… so far 😉
Canadian Down Syndrome Awareness week has come to a close, and so has our fundraiser. We had a lot of fun with this project as it was really the first fundraiser any of us have done. We all learned a lot in the process and definitely found the kinks that we would change next time.
First off Alex and I have a couple people we want to thank as this would not have happened without them. Thank you Stephen Underhay for the gorgeous photo’s you very kindly gave us to use! Alex and Stephen came up with this entire idea and went with it. I helped with some logistics but they are definitely the brains behind this operation. Non of this would have been possible if it wasn’t for the generosity of Boylans Imaging and for their very generous contribution with the prints! John and all of the staff there were amazing to work with!
So at the end of a busy week filling orders, packaging and shipping everything off we were finally able to sit down and relax…. Well after one very important delivery was made of course! On Monday we took a very quick trip up to Calgary where we met Stephen, who drove down from Red Deer. We popped in to the Canadian Down Syndrome Society and were very pleased to had over a cheque for $4000.00!!
Thank you everyone who bought a print, donated, and shared our posts on social media. Your kindness and generosity has blown us all away! The CDSS will be putting your money to hard work by making our communities better places for Jaxson and others with Down Syndrome!
I am SO VERY excited to finally let you all in on the BIG project we have going on for Canadian Down Syndrome Awareness week!
This year we decided that we wanted to do something BIG for Down Syndrome Awareness Week. We also want to make a BIG difference in the Down syndrome community. Our major goal as a family is to bring awareness, understanding, acceptance and education about Down syndrome.
Throughout the week of November 1-7 you will be able to purchase stunning prints of our breathtaking Canadian nature taken by Stephen! You will be able to choose from 5 very different but equally as beautiful photographs of our breathtaking nature that we have here in our country. Each photograph has strong elements of blue and yellow which is the Down syndrome colours. Each print is available in 3 sizes. Boylan Imaging here in Medicine Hat has VERY VERY generously helped with our project and printing of the photographs. It is my absolute pleasure to tell you that 100% OF PROCEEDS will be going directly to the Canadian Down Syndrome Society!
You will only be able to purchase your print for a very limited time! November 7 will be the last day of this fundraiser so head on over to Stephen Underhay Photography and grab your prints NOW!
A HUGE Thank you to Stephen and Boylan Imaging for seeing our vision and helping us reach our goals of bringing awareness and education about Down syndrome.
Being told Jax has severe sleep apnea last month was quite a blow. I was sad that he has gone all this time struggling to breathe at night. I was mad it took so long to get the ENT appointment, then wait another 3 months for the sleep study to finally have an answer (the frustrations of free healthcare). I was disappointed that he will forever (or at least for a long time) be tethered to an air hose at night. Irritated that we will have something to lug around with us on vacations and getaways. Most of all I was dreading the process of getting Jaxson to wear a mask strapped to his face at night.
Bedtime pre-CPAP was usually a fight. He would start to fall asleep, then wake up kicking and straining against you. This could continue over and over again 3 or 4 times before he would fall asleep hard. I would then put him in his crib, where he would usually stay asleep for maybe 30 minutes before waking up for the first time. Within the first 2 hours of going to bed he would normally wake 3-5 times. Jaxson never has long pauses in breathing, and his oxygen sats don’t drop. His brain wakes up the second he struggles to breathe, hence the constant waking, crying, and being very unsettled at night. Even though he has never had long pauses in his breathing we always suspected there was something wrong.
After waiting a couple of weeks to get the trial CPAP machine, we were anxious to get the show on the road. We still had the GIANT hurdle of sleeping with the mask and air on ahead of us. We were mentally prepared for a very long transition period. Once again, in true Jaxson style, he totally blew our socks off!
We started slow. VERY VERY slow. The first week he would only let us hold the mask up to his nose for 3-5 seconds. At this rate I was convinced it would take us months. Then Alex pulled out one of her famous animal impressions! Jaxson thought it was the funniest thing ever to watch his momma hold that mask on her nose and pretend to be an elephant. That sealed the deal for him! Within a couple days of elephanting around, Jax was wearing the mask fully strapped to his face for 20-30 minutes while playing. After a couple days of getting him used to wearing the mask I started putting him to sleep with it on (no air).
Once he was comfortable falling asleep with it, we turned on the air. We were completely shocked with his reaction to the air blowing at his nose. No word of a lie, the second the air hits his face, he closes his eyes, tucks in to me and is asleep in 2.5 seconds flat! I have never ever seen this kid fall asleep so quick! We assumed the hard rush of air in his nose would be bothersome and irritating to him. In reality it’s the exact opposite. The second that strong whiff hits his face he relaxes, tucks himself in to my chest and closes his eyes. The air allows him to breathe when he wants to fully relax to sleep. The air is relief. The air is sleep.
And sleep he does! The last 2 nights he has gone 11.5 hours with that silly elephant mask on his face, and boy does he sleep hard! Yes, he still wakes at night. Not as much, and not nearly as awake, but he is peaceful all night long. No more kicking, no more straining, no more constant rolling to try and get comfortable. He can finally breathe easy. He can finally relax. We can all finally sleep!!
My initial irritations of having to lug this thing around with us, of having him tethered to a hose all night long have all melted away. I am so incredibly happy and relieved for Jaxson to finally know what it’s like to sleep. I am still very sad it has taken SO long from our initial concerns back in early spring to get his issues sorted and diagnosed, but we have made it here and for that I am happy.
Breathe easy big guy, and let’s make up for 8 months of lost sleep!
A couple of weeks ago the 3 of us were chilling on the couch one afternoon. Jaxson was under the weather (and he still is, pretty sure he’s battling RSV yet again) so we were curled up to watch a Disney movie. Jaxson lost interest in the movie and had a sudden burst of energy. He started throwing himself onto Alex and giggling his sweet little face off. Wrestling is probably his favourite activity at the moment, and he could spend an entire hour on the bed throwing himself at you without losing any interest.
Then he saw me beside alex and it was on. He was going to figure out a way to come and wrestle me….. Alex was roadblocking him from crawling over her lap, so he had to figure out a different way. He started pushing alex forward quite forcefully. She would help him out a bit and lean forward. He saw a new route! within seconds he was diving behind her back, making more room, giggling and panting like a little puppy dog. He was working so hard, pulling and kicking his legs. It took him a little bit, but he got through! He never gave up and he never slowed down. The look of pure satisfaction on his face when he made it close enough to “get me”. Priceless.
Alex then said something very interesting. She said “You know what the best thing about Jaxson having Down syndrome is? It’s the fact that he’s SO smart, cognitively I don’t think theres much of a delay if any. But his body is so behind”. She saw the confusion in my face, why is that a good thing? So she kept on. “It’s so cool because it’s like we are watching a super smart 7 month old baby. When typical babies start crawling they kind of just do whatever with little thought. They go, but there’s little purpose, they just do it. Not Jaxson, he thinks, he plans, he plots, he heavily interacts. Then he carries out his plan. It’s so cool to watch!”
Alex is SO right! It’s pretty awesome to watch Jaxson problem solve, and formulate a plan to carry out. I’m serious when I say you can literally watch him plan and think. If there were legitimate gears you would see them spinning at full tilt. Jaxson also just doesn’t just ‘go’ for no reason. Thats the lazy baby in him! Because every movement is extra hard for babies with low muscle tone, it takes much more energy to do things. Which means there is still lot’s of cuddle time for mums ❤
That being said he has become super quick, and turning your eye from him means he will crawl across the living room and kitchen to dump the dogs water dish in 5 second flat! Life is more hectic, crazy and fun with a crawling baby. We couldn’t be more proud of his accomplishments and hard work!!
Also, HAPPY DOWN SYNDROME AWARENESS MONTH!!!
Jaxson was an AMAZING sleeper as a new born. We used to have to wake him up to feed, and he would stay soundly asleep all night long. We were very lucky!! His amazing sleep habits lasted till he was 7 months old, then it happened….. Jax got RSV and was pretty sick for a month. Since then he doesn’t sleep. Tosses and turns what seems like all night long.
At first we blamed his horrible sleeping on the 7 back to back ear infections that followed the RSV. A very logical explanation to bad sleep. unfortunately his horrible sleeps continued on even after we got the ear infections under control. Enter teething. Of course teething starts and clearly thats why he wasn’t sleeping. right?
We brought up our concerns with the pediatric ENT in the spring. We asked for a referral for a sleep study, and she totally agreed with us. We couldn’t blame bad sleeping on ear infections and teething forever. Especially since kids with Down syndrome have a much higher rate of sleep apnea and sleep issues. In Canada it is standard practice for children with Ds to have a sleep study done within their first few years of life regardless of reported sleeping issues.
Around mid summer we couldn’t take it anymore, we stared doing something we swore we would never do. Co-sleep. It was the only way we could all get some rest (especially Alex who is on ‘night duty’ during my work weeks). Getting up 5-10 times a night was getting to be too much.
Finally we received a call with our sleep study date and it couldn’t come soon enough! It seemed like every night was worse than the night before. Jax tosses, turns and sits up over and over and over again. Poor guy wakes up exhausted and barely makes it an hour in the morning before needing his first nap.
The dreaded sleep study finally arrived. I don’t know how it happened but somehow I was nominated as the parent that was going to stay with him for the night. I knew it was going to be a long night but it was far worse than I had imagined! We arrived at 8pm and were sent upstairs to the sleep clinic. By the time the tech had Jax wired and hooked up it was pushing 9:30, WAY past his bedtime. I don’t understand why they don’t adhere to a childs normal sleep routine if they want to properly study it. But hey, I’m not the expert.
The night was way way way longer than any night I have ever experienced on a nightshift working EMS. Jaxson was all over the place. At one point he woke up screaming (VERY unlike him) and it took me half an hour to calm him down. Between a restless baby and the thought of someone watching me sleep behind the camera I think I may have got an hour of sleep all night long. At 4:30am the tech came in a put CPAP on Jaxson as a ‘trial’ and thats when I knew. Of course she had no answers for me when I asked her, but she didn’t have to tell me anything. Jaxson was out cold from that point on until 6am when they came in, turn on the lights and kick you out (yeah, real fun).
Thank goodness we didn’t have to wait long at all for answers because we had an appointment with the sleep doc the next day. The results showed that Jaxson has severe sleep apnea. Waking on average 20 times per hour, no wonder why he is bagged during the day! Jaxson doesn’t quit breathing for long periods of time (which we already knew that). His apnea is obstructive apnea. It’s a combination of probably slightly enlarged tonsils/adenoids, small airway, and low muscle tone (causing collapse of his airway when completely relaxed). All of these things combined make it hard for him to get proper air exchange when he goes into a deep sleep. His body works harder to take deep breaths and he wakes up.
The solution: Jaxson will be using CPAP to sleep. Something new to add to our normal. For those of you that don’t know what CPAP is, it stands for Continuous Positive Airway Pressure. Meaning that Jaxson will wear a teeny tiny mask over his nose that will be constantly blowing air into his nose to keep his airways splinted open (by the air flow) to allow for proper air exchange.
Fingers cross that we get set up with his CPAP machine this week! I feel terrible putting him to bed now that we have a diagnosis and no treatment yet. Thank goodness we don’t have to wait for long. Now fingers crossed that we won’t have to pay out of pocket for this huge expense!
It will be interesting to see how Jaxson handles the mask and his new sleeping routine. We are super excited at the thought of sleep. The biggest thing of all is we can’t wait to see what a constant, restful nights sleep will do for Jaxson and his development. Stay tuned for the update!!
Kids are back to school, the weather is cooling off, leaves are starting to change, and I drank my first pumpkin spiced latte of the year. this can only mean one thing…. The seasons are about to change, and fall is in the air.
So as everyone is pulling out their heavy sweaters and warm blankets, our little family is gearing up for our own big season of change! My job is very quickly coming to an end and Alex is diving head first back into the work force. We always knew this day was coming, but it seemed to seek up on us so quickly!
Its no secret that I have been desperately wanting a career change for about 3 years now. Leaving the only job I’ve know since I was 18 is scary, but necessary for my sanity and for my family. With no idea what my ‘out’ was going to be I was feeling very stuck and very much trapped. As we were planning on kids it made sense that I would be the one to stay home with them, buying time to figure out what I wanted to be when I grew up. However it did not happen like this. Plans get thrown out the window when you become parents to the cutest baby in the entire world literally overnight…. Logistically it only made sense for Alex to stay home and for me to start my ‘retirement’ job as an industrial Paramedic (the one thing I swore I would never do!).
Even though this past year was the opposite of everything that we had planned on, it worked quite well. Much to mine and Alex’s surprise she quite enjoyed staying home with Jax. They have their own little routine when I’m working, and I am very much jealous of that! Jealousy aside I am very happy that Alex got this experience and time to bond with Jax in their own special way. Chances are this is the only ‘stay at home’ experience she will get with our children and it was something very necessary and special that she got to have.
While she has loved being a stay at home momma for a year and a bit (and she has been an AMAZING one at that) she is very ready to get back to work. I never in a trillion years dreamed that I would be so freaking excited to start my new career as a stay at home mommy. It’s been a very hard year working and missing out on Jaxson’s day to day life. I cannot wait for my paycheques to be in the forms of smiles, dirty diapers, sticky hands, a dirty face, and lots of giggles!
The transition for Jaxson will be pretty seamless. He will have to trade his time hanging out at the gym with momma for craft time with mommy, and thats about the only major change that he will endure. We will learn a new routine and a new normal together. Keeping his schedule straight (different therapies, doctors, play dates etc) will be interesting, but I’m sure I’ll figure it out!
This season change for our family will be very interesting. I can’t wait to see how Alex handles work vs staying home. It’ll be interesting to see if she has the same feelings as I have had over this past year. Stay tuned for the updates on this one!!!
What is normal anyways? Normal is subjective. Whatever you fill your own little world with is your normal or typical, which is probably very abnormal and weird to the next person. I’m sure it comes as no surprise that part of our normal is Down syndrome.
Since Down syndrome is A PART of our first and so far our only child, it is what we know as normal. Much of our little world is filled with Ds. Social media feeds flooded with Ds blogs, articles and pictures of my friends insanely cute kiddos with their almond eyes, and giant grins. Weekly therapy. Delayed development. Low muscle tone. Ear tubes. Sign language. Sleep studies. Surgery. Doctors appointments. ‘Therapy’ toys. HUGE celebrations for seemingly little hit milestones. The list goes on and on. Our little world revolves around Down syndrome in some way or another. It’s no wonder that Down syndrome is OUR normal!
I have absolutely no idea what it’s like to have a child that just does things when it’s time. To one day have an immobile infant and literally the next day that baby just magically figured out how to get on all 4’s and do a proper 4 point crawl. Thats abnormal. Most of you have absolutely no idea what it’s like to have a child that works so hard to learn things. A child that you have to run from one appointment to the next to ensure their development and health is on track. That’s not your normal, but it’s ours.
Down syndrome is so normal to us that once I even forgot Jaxson has Down syndrome! True story!
Earlier this summer I was holding my friends little guy who is 6 months younger than Jax. I couldn’t figure out why he was so damn stiff. To me it felt like I was holding a 2×4 and I couldn’t figure out why this kid wouldn’t relax! A few weeks later I was holding another friends little guy who is only a few months old. Again I couldn’t help but wonder what was wrong with him. This baby too was stiff as a board. I thought to myself as I was rocking with him “man, chill out buddy. Relax……..”. It wasn’t until a few days later that it clicked for me. Those babies are ‘normal’ (or typical as we like to say in the disability community)!! Seriously, I felt so stupid that it took literally a month to figure it out. Jaxson has Down syndrome! Jaxson has low muscle tone which means he’s ‘floppy’. Holding Jaxson is like holding a 30lb snuggle bug. He melts right into you. So relaxed, so ‘floppy’ and so snuggly (the best. thing. ever!). This is why those ‘typical’ babies were not normal to me.
I seriously forgot that Jax has Down syndrome! It’s strange how our world literally revolves around Ds that now it’s not even a thought. I have a feeling that Jaxson will always be our ‘typical’ or ‘normal’ child. Alex always says “what are we going to do with a stiff, non flexible baby? They are going to be so hard to dress, change and get into that awkward car seat.”
Down syndrome is our normal and I wouldn’t want i it any other way!