Jaxson, I can’t believe we are celebrating your second birthday today! I feel like this year went quicker than your first year, I don’t know how thats possible!

We have had an amazing year haven’t we? We celebrated many milestones and firsts.

This year you learned to crawl. It was amazing to watch you pull yourself across the floor trying to get the nailpolish last summer. We were all freaking out! Out of no where you decided that you wanted something and you were going to get it. Your pull slowly turned into being up on your arms and dragging your legs with your hips splayed behind you, that was funny to watch! Now you are up on all fours, and you’re stealthy and crazy fast! You are getting into everything, and we are encouraging every single moment of your mischievous independence.

This year you made giant leaps in communication (my favourite milestone!!). Just after you turned 1 you learned your first sign (milk). It took a while for more signs to catch, but now you are picking new ones up daily! You have learned that you can communicate using signs and you are super proud of yourself (SO YOU SHOULD BE!). I love when you ask for things, initiate communication and respond to our questions. YOU ARE SO SMART!

This year you picked up many many many funny quirks.

• Your obsession with your feet, making people smell your feet, smelling your own feet, and having your feet the center of attention.
• The toilet…. oh lordy keeping you away from that toilet is a full time job!!
• Throwing your rings around the house, you could do it ALL day long
• Making people do things like kiss eachother (You physically grab our ears and push me and your momma together) or hold hands. You have taken your love for love to a whole new level and it is AMAZING!
• Fake crying…. you are a DRAMA QUEEN! You have now mastered your fake cry to make it sound like your hurt cry. We will come running and you turn to us with a giant grin, you little turd!
• The head toss when you don’t want to do something (again, DRAMA QUEEN)
• Another body part that you are obsessed with is your glorious belly. You don’t mind hiking up your shirt to show anyone and everyone.
• You figured out that psyching people out is hilarious. Like going in for a kiss and pulling away last minute. Or handing us something like our phone or lip chap, and at the last minute tossing it in the opposite direction, and giving a little giggle

This year you developed such an amazing personality. You are hilarious, stubborn, sweet and very caring. You are kind and gentle, but you are also a little hulk when you want to be. You have become a real, little person this year and it has been wonderful to watch!

This year you fought illness like a champ and managed to go a whole year without a hospital stay!! Well minus that reaction to the anesthetic when you got your ear tubes that earned you 1 overnight stay, but I don’t count that. I remember very vividly your pediatrician telling us when we had got to our breaking point with your hospital admissions to just hang tight and get through your first year. That you kiddos always have a rough first year and after that we will be fine. Boy was she right. Thank goodness! Thats not to say that we haven’t had our issues. Your severe sleep apnea diagnosis was a hard pill to swallow, although not a surprise. You crushed BiPAP and we are all starting to have more and more restful nights.

We have had one amazing year together buddy. From snow days to a beach vacation. From your own room, to co-sleeping, to back to your crib. From crushing milestones to stubbornly refusing to do things.

Thank you for another wonderful year of being our son. Every day with you is a perfect one. Come rain or shine, sickness or health, you make every day the best day ever. Keep on being your wonderful, silly, stubborn, strange self because YOU ARE PERFECT!

So today we celebrate your second birthday, we celebrate YOU and all your perfection. Today is YOUR day little man!

Happy second birthday big guy!

Since becoming a mostly full time stay at home mom I’ve been wanting to bring in a bit of money and have something else to do besides wipe snotty noses, change poopy diapers and be constantly pulling the toddler away from the toilet that he obsesses about putting things in. I consider myself to be crafty and enjoy making things. However I was having a really hard time coming up with something original and unique to make and sell. Then it just sort of fell in my lap….

As most of you know, and I have mentioned it on the the blog before, I made Jaxson a ‘sleep nest’ to help us transition him back to his crib.

Now before you go and sing my praises for how creative my brain is to come up with this idea on my own, start pumping the breaks. We knew Jaxson loved being surrounded by pillows and feeling super secure at night, so we stumbled on a company in the states that sells something similar. However it was for an outrageous price! There was no way we could sink $400 dollars into a product we would have no idea if it would work for us. So I made it myself!! This nest you see above is the very first nest made, it’s sketchy, and needs improvement. Despite the flaws, there was HUGE interest from other mommas wanting this for their toddlers. Thanks to Alex who pushed me to perfect the design and open up shop, we did it!

Turtle Nest Co. was born! Alex came up with the company name as well as solved a few major design flaws in the original nest. (If you were wondering about the name, ‘Turtle’ comes from Jaxson’s famous turtle face he has made since the day we got him. And sea turtles make nests on the beach to lay their eggs) Alex did good on this one!!

Here is what the redesigned finished product looks like!

From rough nights to easy transitions here are some of the benefits of our nests.

-Provides a soft, secure sleeping area for your little one
-The nest snuggles your littles so they can feel safe and secure
-Aids in the transition from co-sleeping to their own crib
-Aids in the transition from their crib to a big kid bed
-Perfect for travel and on the go sleeping
-The nest grows with your child allowing many years of use (open up the legs of the nest and your child can grow nice and tall but still feel secure in bed!)                                                     -The nest fits perfectly in your little ones crib

Jaxson’s nest has made a huge improvement with his comfort at night. A nice perk to having him sleep in his nest is that we aren’t getting kicked in the back, punched in the throat, and backhanded in the eye at 3 am.

You can visit our FB page HERE 

Or buy the nest from our Etsy shop HERE ***Prices are in Canadian Dollars, making it a steal of a deal for you lucky Americans!!*** (there is some confusion to the price. If you are on the Etsy page from the USA then it will come up with the price in USD. so to avoid any confusion the nests are $180CAN and with the current exchange rate around $139USD)

HAPPY SLEEPING!!!

March 21. 3-21. To some, today is just another day; but to our family and many others its a day to celebrate those with Down syndrome. So today to celebrate, I (Jaxson’s other mom) am going to share my story. Holly has shared hers before, how she has always known she wanted to parent a child with Down syndrome, but my story is very different.

I can remember a time early in our relationship when Holly mentioned she wanted a child with Down syndrome. Honestly, I thought she was joking. When I came to realize she was serious, I brushed it off as something that would actually never happen. Now don’t get me wrong, its not that I didn’t want a child with Down syndrome, I just thought it would be very financially and time consuming. Eventually, I told Holly that we could think about it later in life, once we had older kids and were at a mature spot in our careers and lives. November 2013, that all changed.

In November 2013 I went off to Texas for a few weeks to finish off my practical portion of my firefighter certifications (NFPA 1001s). It was an amazing few weeks that I knew would change my life, bringing me that much closer to my dream job as a firefighter. What I didn’t know is exactly how my life would change. During my first week of training in Texas, one of our instructors approached our class and asked for some help. One of his Lieutenants has a daughter with Down syndrome. Her name is Madison and she is 8. She is also autistic and non-verbal. A few months before I went to Texas, Madison had a medical emergency and ended up in a diabetic coma. She had been unable to communicate that she wasn’t feeling well (due to unknown low blood sugars). By the time I was in Texas she was making a full recovery at home. Her doctors had recommended that she get a service dog to help detect her insulin levels so that this wouldn’t happen again. Unfortunately, this service dog was going to cost her family close to $20,000.

This is where my instructor came in. He had asked us to come up with a plan to raise some money to help the cause. If we raised $500 the school would match. I was a class Captain during training so I sat down with my other officers and we started to brainstorm. We were a class of 25 people, so $20 each was $500 no problem. But we knew we could do more. We got permission from the school and the local fire departments to do a boot drive at the local Walmart. We did this over the weekend for several hours each night after training all day. When all was said and done we had raised just over $6000 for Madison’s family! Because I was Captain, I got to meet Madison and her dad and tell them the good news. Madison was very shy around strangers but luckily for me, I was wearing purple eyeliner and thats her favourite colour! The family was over joyed with the news.

I called Holly that night and told her all about our success. It was right about that time that I knew something had changed in my mindset. I got to spend some time with Madison and her dad and I saw something between the 2 of them I had never seen before. Here we had this beautiful little girl with so much against her, medically speaking. Life had been hard. But she had this beautiful smile that never faded and the way her dad looked at her, it was so special. I knew then that this was a bond that people with “typical” children didn’t have. I honestly still don’t have the words to describe what I saw, in fact I think felt is a better word, but it was pure magic and it changed my heart.

Right before I left Texas I told Holly that I wanted a child with Down syndrome. We had already been trying to start a family and we decided right then that we would pursue adopting a child with Down syndrome. I guess the rest is history. A short 6 months later we were parents to the most perfect child ever, Jaxson.

So now you know my story. Happy World Down Syndrome Day.

The last few months we haven’t noticed any HUGE gains with Jaxson. He’s been learning small skills here and there, but there hasn’t been a huge significant change in his mobility or communication. Not a big deal, as we have learned by now that development ebbs and flows in random time increments. The 3 of us keep working hard and eventually something clicks.

As many of you know we’ve been teaching Jaxson sign language. Or shall I say we are teaching ourselves sign language and just preforming it for Jaxson, hahaha. We started around the time he was 6 months old. We would sign “milk” when we gave him and bottle, and “all done” when he was done. Those were the first ones we started with and we would pick up more as time went on.

Around 11 or 12 months Jaxson did his very first sign, “all done”. A few months later he signed “milk”. He signs “milk” when he’s super tired and wants to be put to bed, SMARTY!! Then the signing stopped. He didn’t do any more, although he understands everything we sign. Alex and I continued to sign with him. The common signs we do during the day are: Milk, all done, please, thank you, water, more, eat, dog, play, go, home, book, sleep, tired, baby, shoe, socks, coat…. I’m sure I’m missing a few but those are the ones I can think of off the top of my head.

Signing has become so routine to us that we don’t even notice we’re doing it. Alex and I have both caught ourselves signing long after the baby has gone to bed, or when we aren’t around him at all. It’s become part of our subconscious.

Despite our non stop signing, Jaxson hasn’t pick up on any of them! He was around 16 months when he learned to do his last sign. We haven’t been frustrated, not one bit, but a couple weeks ago we started chatting about it and wondering why he hasn’t picked up on the signing. Two, yes TWO days after this conversation (which I’m sure he overheard) it happened……

Jax and I were having a lazy day, he had a tummy bug and we were laying very low for a couple days. We were sitting on the bed and were passing his baby lotion back an forth. I would sign “thank you” to him everytime he passed it to me (just like always). For some reason I asked him to say ‘thank you’ back to me, and he did! Very clearly he put his hand to his mouth (the sign for thank you is putting your hand to your chin and pulling it away). I asked him to do it again and he did it, the same gesture over and over again! I was so over the moon and couldn’t believe that 2 days after our talk he learned a new sign. Of course Alex was working and missed it, but I sent her a video and she was ecstatic.

The very next day we were playing with the dogs and we asked Jaxson to say “dog”. No word of a lie he took his hands and slapped his legs, just like that, he signed dog!!! 2 days after that he learned to sign “water”.

In the span of a few short days he was picking up signs like it was no big deal. He was totally blowing us away and we couldn’t be more proud! I have a feeling he’s known these signs all along and we just never asked him to do them so he had no reason to. And who knows, maybe he’s been doing them all along and we just weren’t picking up on it! Jaxson has also leaned that he can ask for his water without pointing at it, which is super cool. The communication with signing is now a 2 way street and he’s not just doing it when we ask him to. He initiates a sign to tell us something.

Once again Jaxson has taught us that patience pays off. We always say that he does things in “Jaxson time”, signing was no exception to the rule.

It’s been an entire month since my last post. I’ve been so neglectful with Down With Jax and it makes me sad. I wish I could tell you we’ve been so busy doing awesomely cool things that this just got put on the back burner. But here’s the real reason. We have been dealing with a baby who is not sleeping! Surprise Surprise.

When Jaxson got diagnosed with severe obstructive sleep apnea in the fall we were of course disappointed but also so happy to have an answer as to why he hasn’t been sleeping for over a year. Waking every 20-40 minutes every.single.night! When we first got Jaxson on CPAP it worked wonderfully, for 2 whole weeks…… It seemed like he got used to the pressures and each night became worse than the one before.

Before Christmas we subjected ourselves to another horrendous sleep study to see how the CPAP was working (or not working in his case). Over the holidays his sleeping became unbearable. We both found ourselves in tears some nights, in pure frustration and truthfully, anger. We hassled the sleep clinic on multiple occasions to have his study read. But each time we called for results the doctor still hadn’t looked at it.

Finally we got the phone call mid late January telling us that the CPAP was doing little to nothing for Jaxson. Another result we were SO happy to hear because it confirmed our suspicions. We were told Jaxson requires BiPAP.

BiPAP stands for Bilevel Positive Airway Pressure. To simplify it, Jaxson requires much higher air pressures in his mask to keep his airway open. However, the pressures are so high that he would be unable to exhale against them. So BiPAP will trigger the high pressure to blow when he takes a breath in, as soon as he is done his breath the pressure drops down to a very low pressure to let him exhale. The machine is also set to blow the high pressure if his body forgets to take a breath, this will trigger him to take a breath. CPAP on the other hand is just one continuous pressure, not the 2. (If you are at all interested to know the pressures here they are. The CPAP was set to 6 cmH2O the BiPAP is set to 14 cmH2O as the high pressure, and 6 cmH2O for the low pressure)

Within days of getting the results we headed back in to Vitalaire and traded in the CPAP machine for the BiPAP machine. We were told that the transition from CPAP to BiPAP will be a huge adjustment for him (even though the mask is the same and he wears his mask no problem). Well they were right…

This is when we were at our absolute whits end. We thought we had the final answer to his sleep issues and it seemed to create more. We reached our breaking point! Jaxson would settle and fall asleep easily on the BiPAP, but the high pressures would bug him enough for him to wake up within 40 minutes of going to bed. He would then lay there with his mask on, eyes wide open, refusing to close them, refusing to sleep. Every night, for hours on end this is how we spent our evenings. Around midnight we would finally get him settled for the night and then he would sleep ALL NIGHT LONG. Yes, ALL freaking night! our nights were so bitter sweet.

This lasted close to a month. An entire month of never having any alone time, or time to sit, time to relax, time to get school work or house projects done. Yes we slept at night, but this may have been worse than not sleeping. Unfortunately leaving a 22 month old with grabby hands alone, with his mask on and a long air hose tied to the mask was not an option. So we laid with him, we rocked him, we spooned him, we rubbed his back, played with his hair, we sang to him, we did it all. Every night for hours on end.

Finally we figured out the solution to this waking up and not sleeping issue. We pushed back his bedtime to an hour later. We tire him out, and I mean to the point of full on exhaustion before bed. He is now so tired that he is able to sleep through the first sleep cycle and stay asleep. He still cries when he can’t find his suckie or wants to be turned over (yes, this is the monster we have created since we started co-sleeping 6 months ago), but he stays asleep for the most part, ALL NIGHT LONG!

Soon we will start the transition of getting him back to his crib. I made him a swedish sleep nest so he feels comfortable and secure. He seems to really like it, and hopefully that will aid in the transition back to his own bed. I am still super apprehensive about having him alone in his crib with a long hose attached to him, but I am starting to feel better knowing he isn’t restless at night anymore.

For the first time in over a year we are all finally getting sleep in this house, and it’s almost unbelievable. I’m sure the sleep saga isn’t over but for now we will take it

P.S. Did I mention the BiPAP machine is FULLY COVERED, where as the CPAP machine we would have had to pay out of pocket. YAY!!!

A couple months ago Alex and I were talking about Jaxson’s heart surgery. It’s something we rarely talk about as it’s in our past and behind us. But for whatever reason it was the topic of conversation. Alex then brought up ‘the incident’….. She asked my why I’ve never blogged about it and never talk about it.

That got me thinking….. I don’t think it’s intentional…. Maybe it is a little…… Most people don’t know about ‘the incident’, in fact very very few people know about it. It’s something I don’t like to think about, much less talk about. But here it goes….

After 5 and a half anxious hours of waiting to hear news about how Jaxson’s heart surgery went and how he was doing, we watched his surgeon walk out of the O.R. and head straight for us. He took us aside and sat us down. He started off with “Jaxson is doing great, BUT the surgery didn’t go as well as I hoped….” He then went on to tell us that Jaxson’s common valve (the giant singular valve that split his 2 gaping chambers) was the worst he’s even seen. He told us that he didn’t have much valve tissue to work with to make 2 valves out of. He did the best he could with the little he had to work with but he was confident it wasn’t going to hold. He prepared us for the high likelihood of Jaxson having to go back to the O.R. within the next 24 hours to receive an artificial valve.

In that instant I think we both felt totally deflated. We were so thankful that our 11 week old baby had made it through open heart surgery, but the fact that he was most likely going to have to go back very soon for another was almost too much to handle.

Reeling from that crappy news we grabbed our belongings and headed over to the hallway of the PCICU to wait for the ‘all clear’ to go in and see our baby. After another 40 minute wait a nurse came to fetch us and lead us to Jaxson’s area.

Jaxson was so tiny laying on that crib and had so many attachments. They were in the tail end of transferring all of his meds, equipment, and lines over. Little, tiny Jax was surrounded by RT’s, doctors and nurses. We stood back, out of the way, and watched the organized chaos that I am very familiar with when it comes to transferring a critically ill patient.

Thats when it happened. One alarm starting dinging….. no big deal I thought,  it’s obviously a sensor that isn’t picking up what it should. Then the dinging turned into the loud alarm. Instantly my eyes shot up to his monitor. One flashing number turned into two, then three. Instantly the number of people around his bed doubled. Jaxson was completely surrounded and the organized chaos turned not so organized. Then the apnea alarm sounded. The loudest alarm of them all. Thats the alarm that tells you the patient is no longer breathing. At this point people started shouting and moving fast. Very very fast. But no matter what they did that alarm kept going….

Time all of a sudden went into slow motion. I knew what was about to happen next. I knew that apnea in an unstable infant won’t last long until his insanely fragile heart that had just been on bipass, cut, and stitched up just stops. My head had one million thoughts flying through it all at once but the thought that screamed the loudest was “I can’t stay and watch them code my baby.”

I left. My shaky legs carried me back to the hallway where I collapsed against the wall. I couldn’t breathe. I panicked. The single most horrendous feeling of my entire life. I was angry, I was so angry….. All I could think was we got our perfect child, we’ve fallen completely in love with him and he’s being taken away from us. Just like that, in a blink of an eye.

I sat in that hallway for what seemed like an eternity, but I think it was only 10 minutes or so. I couldn’t bare to go back in there to see the scene that was surrounding Jaxson. eventually the social worker from the PCICU came out and sat down beside me. The only thing I could get out was “is he alive?”. When she smiled I knew everything was ok and I got my legs back under me and walked back in.

To this day I am amazed that Alex was able to stay in there and watch it unfold. She’s so strong and brave! I think I’ve been a part of too many bad situations just like that and still have those scenes burned into my brain. I just couldn’t bare to have the most horrific scene of all piled on top of all the other ones.

In the end the culprit of the apnea was a large mucous plug in his endotracheal tube. Alex said it took them a bit to figure it out but once they pinpointed the problem and resolved it, everything stabilized quickly.

Not a day goes by that I don’t thank the universe for Jaxson and for keeping him here for all of us to enjoy ❤ (and on a side note, that fragile valve that was probably going to have to be replaced within 24 hours is still holding strong a year an a half later with no signs of failure!!)

It’s that time of year again. Time to say goodbye to the year and jump into a new one. Time to reflect on the past and look to the future.

2015 has been a year of change for us. I hope we can say that about every year. Change is good, it’s scary but it’s good. This past year we made some major decisions and big life changes. From a giant downsize to career uncertainties. We celebrated a first birthday, a ‘first’ halloween and a second Christmas. We watched our son reach major milestones and struggle with others. We fought illness and enjoyed our health. From holidays to endless stretches of work. We lost a ton of sleep but don’t really mind.  IT WAS A GREAT YEAR!

All in all we really couldn’t have asked for a better year. The stress and the hardships were totally worth it for the fun and easy. Having things just fall into place after months and months of worrying just seems to be our thing. I think our new motto should be “it’ll all work out” after this last year (heck after the last few years!). I don’t know if there’s a horseshoe permanently lodged somewhere where we don’t see, but things just seem to always fall into place.

So as we say goodbye to 2015 we embark on a whole new year. A blank year with a clean slate. So much can happen, so many new adventures to take, so many new things to do and places to go. New memories to make and store away. New relationships to form and old relationships to tend to. SO EXCITING!

Our 2016 is starting off big. New Jobs (yes plural) for us both! Alex got her dream job as a full time firefighter at DND Suffield. She starts the first week of January and she is crazy excited! I will be working a few hours a week teaching a lab for the MHC Paramedic program! I am SO very excited about this new opportunity as I am very much done with working on car and the shiftwork, but I am not ready to throw in the towel completley. Teaching in this setting is new for me but I am very excited for this brand new opportunity.

Maybe we will even welcome a new family member in 2016! And no, it won’t be that big dog Alex has been incessantly harassing me about for the last 2 years (I promise that WILL come in time). No promises on that new family member, but in 2016 our doors will be open and we will be waiting ❤

We are ready for whatever 2016 will throw our way!

We wish you much peace, happiness, and health in the new year. From our family to yours ❤