#longqtsyndrome Instagram photos and videos

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Our rocks are heading out on new adventures  These will be spreading cheer all throughout the #bayarea  We are so thankful for our friend @ebloverocks spreading our message of #longqtsyndrome awareness, we are sharing their original post  We also included rocks created by guest artists from our paint parties  keep your eyes open you never know where a rock will be  repost of pics  #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sads  #heartwarrior #awareness #heshouldbehere #lqts  #community #helpingothers #lifeafterloss #ebloverocks  #thekindnessrockproject  #changetheworld #changelives #womenrock  #travel  #getoutside  #sacramento #adventure
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Our rocks are heading out on new adventures These will be spreading cheer all throughout the #bayarea We are so thankful for our friend @ebloverocks spreading our message of #longqtsyndrome awareness, we are sharing their original post We also inc

@rocksforryan stocked us up on some beautiful rock so that we can help spread #longqtsyndrome awareness here in the SF Bay! These will go out though out the next few weeks!

#EBLoveRocks #ebrocks
#TKRPambassador #thekindnessrocksproject
#paintedrocksofinstagram #rocks #paintedrocks 
#kindnessrocks #hiddenart #hiddenrock
#artdrop #freeart
#spreadlovenothate 
#spreadkindness #spreadlove 
#alwaysbekind 
#bepositive 
#kindnessmatters #1aweek 
#itsthelittlethings 
#havefunfindingme 
#raok #randomactsofkindness
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@rocksforryan stocked us up on some beautiful rock so that we can help spread #longqtsyndrome awareness here in the SF Bay! These will go out though out the next few weeks! #ebloverocks #ebrocks #tkrpambassador #thekindnessrocksproject #paintedrocks

Many of you know about my brother and his life threatening heart condition. Andrew has Long QT syndrome,and according to the expert at Mayo Clinic, he has a very advanced,  adrenaline based version of it. Basically what happens is when Andrew’s heart rate becomes overly accelerated his heart stops. This has happened 3 times now, all of which he was revived which is such a blessing. I can’t imagine what he is going through daily. All Andrew has ever wanted was to be “normal” and that was his Christmas wish last year. A wish that we never could see happening. However, come to find out, there is a procedure that will stunt his Long QT and give him the chance to live his life as normally as possible (which means a pricey surgery)! If you are able to donate please do! If you can’t donate, please share this and help us get the word out. Thank you! ️ The fundraiser information is on my Facebook page.
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Many of you know about my brother and his life threatening heart condition. Andrew has Long QT syndrome,and according to the expert at Mayo Clinic, he has a very advanced, adrenaline based version of it. Basically what happens is when Andrew’s heart

Life is the most precious treasure of this world.
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Life is the most precious treasure of this world.

Check out all the amazing rocks created and donated at our paint station at yesterday's FREE cardiac screening hosted by @viaheartproject at @stangmob   it was amazing to see hundreds of kids and families come through, thankful for all these rocks for #longqtsyndrome   Truly saving lives one smile at a time    #rocksforryan #sads  #sadsfoundation #longqtsyndrome #heartwarrior  #roundtreerock  #viaheartproject  #lqts #heartwarrior #awareness  #community #helpingothers #lifeafterloss #childloss #nevergiveup #cprsaveslives  #kindnessrocks #thekindnessrockproject  #changetheworld  #scaaawareness #callpushshock #cprsaveslives
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Check out all the amazing rocks created and donated at our paint station at yesterday's FREE cardiac screening hosted by @viaheartproject at @stangmob it was amazing to see hundreds of kids and families come through, thankful for all these rocks fo

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#medalmonday 
A day after my last triathlon of the season. I have reflected on a different season for me. 2 Triathlons in total and 5 Aquathlons. I have enjoyed getting myself back to fitness since my operation in March. My swimming is the best it’s ever been, thanks to @hartlanda and @mark.salway for the help in the pool ‍️. I shall keep swimming over the winter in a bid to get as fast and efficient as I can for 2020. In the mean time I have 3 running races left this year with the last one possibly being the longest run I attempt in one day !! #medals #triathlon #triathlontraining #swimbikerun #triathlete #run #swim #bike #fitnessmotivation #fitness #fitnessgoals #longqtsyndrome
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#medalmonday A day after my last triathlon of the season. I have reflected on a different season for me. 2 Triathlons in total and 5 Aquathlons. I have enjoyed getting myself back to fitness since my operation in March. My swimming is the best it’s

So today we had a special visit from our friend @ebloverocks   We are so happy life worked out so that we could meet for the 1st time   check out these amazing rocks she created and brought me, 2nd pic she rocked our paint station  love our rocking community   #rocksforryan #sads  #sadsfoundation #longqtsyndrome #heartwarrior  #roundtreerock  #viaheartproject  #lqts #heartwarrior #awareness  #community #helpingothers #lifeafterloss #childloss #nevergiveup #cprsaveslives  #kindnessrocks #thekindnessrockproject  #changetheworld #heartmonth  #scaaawareness #callpushshock #cprsaveslives
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So today we had a special visit from our friend @ebloverocks We are so happy life worked out so that we could meet for the 1st time check out these amazing rocks she created and brought me, 2nd pic she rocked our paint station love our rocking c

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Great to be back racing at the Langport Triathlon in perfect weather and a new trisuit thanks to @heartsportsuk. 
I scored a Swim Pb with a time of 7:42, last year was 8:25 so I was very happy with that. 
The bike went well despite the lack of decent training over the summer and encountering a slow tractor on the course with no chance to overtake him and in the last bit I struggled to get my foot out of my bike show and lost a bit of time. 
Once out on to the run I felt good and not bothered my my slower than normal bike split. It was hot on the run so I held a steady pace and put the hammer down over the middle 3 km. my pace was getting slower but I picked it up to cross the line in 1 hour 17 mins and 43 seconds. Not a pb for but I’m more than happy with my performance and a Swim Pb. Next year  will be around soon enough
Well done to everyone who took part and helped out this weekend 
#triathlon #racelocal #swim #bike #run  #triathlete #tri365 #longqtsyndrome #swimbikerun #autumnsunshine #visorclub #fitness #fitover40
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Great to be back racing at the Langport Triathlon in perfect weather and a new trisuit thanks to @heartsportsuk. I scored a Swim Pb with a time of 7:42, last year was 8:25 so I was very happy with that. The bike went well despite the lack of decent

We are all ready for our paint station see us today bay area friends ( we are located behind the pool)   We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject at @stangmob and also paint a rock for awareness while at it walk in's welcomed from 11am until 1pm   Truly saving lives one smile at a time  repost of pics   #rocksforryan #sads  #sadsfoundation #longqtsyndrome #heartwarrior  #roundtreerock  #viaheartproject  #lqts #heartwarrior #awareness  #community #helpingothers #lifeafterloss #childloss #nevergiveup #cprsaveslives  #kindnessrocks #thekindnessrockproject  #changetheworld #heartmonth  #scaaawareness #callpushshock #cprsaveslives
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We are all ready for our paint station see us today bay area friends ( we are located behind the pool) We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject at @stangmob and also paint a rock for awareness

It’s been a LONG time since I last posted on this specific Instagram account. The pictures I included in this post aren’t in even half of what has happened since summer and the start of the new school year (yes that includes the snowboarding pic too...there was snow in July). It’s been a whirlwind of activities, responsibilities, a sudden increase in things to do and even more limited time to do those things with. Truth be told, I’m waiting for things to slow down. Many blessings have happened since my last post. I’m grateful for that. I’ve been able to spend time with people. I volunteered for causes I believe in. I took care of my kid’s needs, began managing a startup, networked, experimented with my creativity, and definitely started putting my degree to use. However in the midst of the busy schedules, responsibilities, and borderline chaos, I’ve let myself go. I didn’t just put myself second, or even third on the list. I’ve put my overall well-being last and it has showed. My health has taken a hit. I’m working to regain control again-physically, mentally, and emotionally. My battery powered heart depends on it. Self-care is a must for all. Yes, it is easier said than done, but as my grandma always told me when she was alive, “Always remember, your health is wealth. You have to also take care of yourself.” #HealthIsWealth #HeartPatient #SuddenCardiacArrest #CompleteHeartBlock #LongQTSyndrome #Schwannoma #Tumors #Defibrillator #Survivor #HeartDisease #SelfCare #LiveLaughLove #MentalHealth #Wellness #Wellbeing #ItAllTiesIn #PreExistingConditions #MomLife #WeAreHeart
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It’s been a LONG time since I last posted on this specific Instagram account. The pictures I included in this post aren’t in even half of what has happened since summer and the start of the new school year (yes that includes the snowboarding pic too.

Hooray found rock  This cutie was found while enjoying a fish fry  The lucky finder sent us this gorgeous pic of the find, and will be rehiding in #michigan  So thankful for our friend @morguemuffin for rocking out #wisconsin  We love our rocking community and all the rock support in spreading our message of #longqtsyndrome awareness world wide   #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #love #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss  #kindnessrocks #hearts #sacramento  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks
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Hooray found rock This cutie was found while enjoying a fish fry The lucky finder sent us this gorgeous pic of the find, and will be rehiding in #michigan So thankful for our friend @morguemuffin for rocking out #wisconsin We love our rocking com

Rock drop in Brookfield, Wisconsin! #longqtsyndrome #sadsfoundation
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Rock drop in Brookfield, Wisconsin! #longqtsyndrome #sadsfoundation

I just might be a little overly excited about this packet of fabulous info! (All for my son’s school!) I wish my school had this information when I was a kid. #SADS #longqtsyndrome #sadsfoundation #longqtsyndromeawareness #thecurrentlifestyle ️️️
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I just might be a little overly excited about this packet of fabulous info! (All for my son’s school!) I wish my school had this information when I was a kid. #sads #longqtsyndrome #sadsfoundation #longqtsyndromeawareness #thecurrentlifestyle ️️️

Hooray found rocks  The lucky finder found 3 of our rocks in #sedona  love these adorable #found pics sent to us by the finder @belladetisch and Christina Detisch  one special rock will be treasured in #vegas the other 2 will be rehidden  We are so thankful for our friend Michele Fisher for spreading our message of #longqtsyndrome awareness  Keep your eyes open you never know where a rock will be    #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sads  #heartwarrior #awareness #heshouldbehere #lqts  #community #helpingothers #lifeafterloss #foundrock  #thekindnessrockproject  #womenrock  #travel  #getoutside  #sacramento #adventure #arizona
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Hooray found rocks The lucky finder found 3 of our rocks in #sedona love these adorable #found pics sent to us by the finder @belladetisch and Christina Detisch one special rock will be treasured in #vegas the other 2 will be rehidden We are so t

What doesn't kill you makes you stronger.
Chill out day after surgery🦄
#heartdiseasepatient #heartdisease #longqtsyndrome #prinzmetalangina #2daysaftersurgery
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What doesn't kill you makes you stronger. Chill out day after surgery🦄 #heartdiseasepatient #heartdisease #longqtsyndrome #prinzmetalangina #2daysaftersurgery

Henris Ausrüstung für eine Übernachtung bei Papa. Bei Karl kam es mir schon immer wie ein halber Umzug vor und vergessen habe ich da auch hin und wieder mal was. Aber diese Sachen schaue ich bestimmt 10 mal durch und prüfe ob alles da ist. Als Henri das erste mal über Nacht zu seinem Papa gefahren ist, mit Unterstützung von Karl natürlich, habe ich doch tatsächlich eine „Gebrauchsanweisung“ für Papa geschrieben...🤓 #helicoptermom ..... so sehr ich mich auch freue mal allein zu sein, es fällt mir unfassbar schwer diese Verantwortung abzugeben. Groß ist de Angst bei einem Anfall nicht dabei zu sein, die Sorge Henri könne wieder eine Rhytmusstörung bekommen und umkippen....worst-case-Szenarien in Endlosschleife rasen durch mein müdes Mutterhirn. Aber was wäre denn die Alternative? Henri an mich Ketten? Wie lange denn? Für immer? Natürlich nicht. Er soll leben. Richtig leben. Meine Ängste sind meine und es ist meine Aufgabe sie nicht zu seinen werden zu lassen! Ich muss vertrauen und vorallem los lassen! Jeder weis das sich das leichter schreiben als umsetzen lässt... Doch wie heißt es so schön „Kinder brauchen Wurzeln und Flügel.“ und ich brauche ehrlichgesagt mal Pause.  #mamaleben #mamavonzwei #jungsmama #alleinerziehend #alleinerziehendemama #behindertekinder #specialneedsparent #medikamente #epilepsie #lebenmitepilepsie #epilepsywarrior #longqtsyndrome #besonderekinder #kleinerkämpfer #papawochenende #alltagmitkindern #chronischkrank #cmvawareness #stopcmv #liebe #loslassen #kinder #freiheit #babyphone #orthesen
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Henris Ausrüstung für eine Übernachtung bei Papa. Bei Karl kam es mir schon immer wie ein halber Umzug vor und vergessen habe ich da auch hin und wieder mal was. Aber diese Sachen schaue ich bestimmt 10 mal durch und prüfe ob alles da ist. Als Henri

We are so excited to be hosting a paint station at this event, Bay area friends   We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject, it's not to late preregistration ends today and also paint a rock for awareness while  attending  swipe for event info   Truly saving lives one smile at a time  These hearts for #longqtsyndrome awareness will be hidden through out repost of pics   #rocksforryan #sads  #sadsfoundation  #heartwarrior  #roundtreerock  #viaheartproject  #lqts #heartwarrior #awareness  #community #helpingothers #lifeafterloss #childloss #nevergiveup #cprsaveslives  #kindnessrocks #thekindnessrockproject  #changetheworld #heartmonth  #scaaawareness #callpushshock #cprsaveslives
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We are so excited to be hosting a paint station at this event, Bay area friends We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject , it's not to late preregistration ends today and also paint a rock for

These rocks were inspired by their upcoming trip to #arizona  Hoping to bring cheer and smiles to all those who find  We are so thankful for our friend Michele Fisher for spreading our message of #longqtsyndrome awareness world wide products used @plaidcrafts @kuretakezig_usa   #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sads  #heartwarrior #awareness #heshouldbehere #lqts  #community #helpingothers #lifeafterloss  #thekindnessrockproject  #sunset  #changelives #womenrock  #travel  #getoutside  #sacramento #adventure
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These rocks were inspired by their upcoming trip to #arizona Hoping to bring cheer and smiles to all those who find We are so thankful for our friend Michele Fisher for spreading our message of #longqtsyndrome awareness world wide products used @pl

Appreciate every moment.
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Appreciate every moment.

Asymptomatic LQTS for 35 years.
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Asymptomatic LQTS for 35 years.

This week hasn’t been too great for this guy, but honestly what a champ! He’s been so good through all the poking & prodding today, all he wanted in return was for me to forget about my To Do list & chill on the couch with him watching home reno shows. Think I’ll give in. The list can wait till tomorrow but cuddles can’t  
#trapsdisease #trapssyndrome #raredisease #longqtsyndrome #longqt #heartkids #oneinamillion #rarewarrior
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This week hasn’t been too great for this guy, but honestly what a champ! He’s been so good through all the poking & prodding today, all he wanted in return was for me to forget about my To Do list & chill on the couch with him watching home reno show

Hooray found rocks  These cuties have been found in Pleasanton  our new friend @travis_drawsuwu sent us pic 1  Pic 2 posted by the lucky finder @a.vkx  These  beautiful rocks were created by the talented  @trinaannv family  We love our rocking community and all the rock support in spreading our message of #longqtsyndrome awareness   #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss #pleasanton  #kindnessrocks  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks  #bayarea
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Hooray found rocks These cuties have been found in Pleasanton our new friend @travis_drawsuwu sent us pic 1 Pic 2 posted by the lucky finder @a.vkx These beautiful rocks were created by the talented @trinaannv family We love our rocking commun

Our rocks are heading out on new adventures  These will be spread all the way to #arizona  Hoping to bring cheer and smiles to all those who find  We are so thankful for our friend Michele Fisher for spreading our message of #longqtsyndrome awareness  We also included rocks created by guest artists from our last  paint party    #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sads  #heartwarrior #awareness #heshouldbehere #lqts  #community #helpingothers #lifeafterloss #longqtsyndrome  #thekindnessrockproject  #changetheworld #changelives #womenrock  #travel  #getoutside  #sacramento #adventure
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Our rocks are heading out on new adventures These will be spread all the way to #arizona Hoping to bring cheer and smiles to all those who find We are so thankful for our friend Michele Fisher for spreading our message of #longqtsyndrome awareness

At it again filling up on lots of rocks in anticipation of a few upcoming paint parties  We switched it up a bit and visted our friend Anna with Mid Valley Rock who graciously #sponsored these amazing Mexican Pebbles  of course we left some rock love behind  They also have amazing #flagstone on their yard  This yard is huge sharing properties with Roundtree Rock & Gardening Remember always #supportlocal business as they often are doing so much that helps our #community So grateful for all the support in helping us spread #longqtsyndrome awareness   #rocksforryan #sadsfoundation #sponsor  #heartwarrior #awareness #heshouldbehere  #helpingothers #thekindnessrockproject  #midvalleyrock #kindnessrocks #sacramentobusiness  #changetheworld #changelives #womenrock  #rocks #supplies #shoplocal  #getoutside #rockhunting #landscape #gardening #sacramento #supportothers #roundtreerock
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At it again filling up on lots of rocks in anticipation of a few upcoming paint parties We switched it up a bit and visted our friend Anna with Mid Valley Rock who graciously #sponsored these amazing Mexican Pebbles of course we left some rock love

Our little hero.
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Our little hero.

ZNA 03:42h. Thanks Mum and Dad for be there for me in nights like this️love you #heartdiseasepatient #heartdisease #longqtsyndrome #prinzmetalangina
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ZNA 03:42h. Thanks Mum and Dad for be there for me in nights like this️love you #heartdiseasepatient #heartdisease #longqtsyndrome #prinzmetalangina

Hooray found rock  Our heart  was found at #eiffeltower ohh la la   Huge thanks to our friend Jan Macharro for rocking out #paris for us  So incredibly thankful for our friends spreading #longqtsyndrome awareness world wide  all pics repost  #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss #hearts #kindnessrocks  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks
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Hooray found rock Our heart was found at #eiffeltower ohh la la Huge thanks to our friend Jan Macharro for rocking out #paris for us So incredibly thankful for our friends spreading #longqtsyndrome awareness world wide all pics repost #rocksfo

If I would have allowed my diagnosis’s to define me, this miracle wouldn’t be happening. #ms #longqtsyndrome #pcos #ovarysurgery #diverticulitis #asthma #ibs #chronicmigraines #allergies #constantpain I still can’t believe this #baby is HAPPENING 🥰 We are beyond excited to add a 4th into #ourtribe I would also like to thank #giantgrocerystore for adding #starbucks  #pumpkinspicedicedlattes are my jam! Happy #tuesday everyone! #pregnant35weeks Plexus changed our life from the inside out! #forreal #probiotics #guthealthmatters
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If I would have allowed my diagnosis’s to define me, this miracle wouldn’t be happening. #ms #longqtsyndrome #pcos #ovarysurgery #diverticulitis #asthma #ibs #chronicmigraines #allergies #constantpain I still can’t believe this #baby is HAPPENING 🥰 W

It’s the one year anniversary of this beautiful boys second, and most serious, heart surgery ️
We spent the entire day in hospital again today with back to back appointments, but were lucky enough to get outside for some sunshine at lunch. 
So much has changed in this time. Health wise, not always for the better... We had hoped that surgery a year ago would be his last heart related op, but it’s not looking like that anymore. 
It’s ok though, if anything these comparison photos in the PICU & outside the hospital for lunch just prove that he can overcome anything that comes his way & end up stronger than before.
We got this baby boy, just like we got everything else in the past 
#heartkids #longqt #longqtsyndrome #heartwarrior #raredisease #rarediseasewarrior #trapssyndrome #thrombophilia #julian
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It’s the one year anniversary of this beautiful boys second, and most serious, heart surgery ️ We spent the entire day in hospital again today with back to back appointments, but were lucky enough to get outside for some sunshine at lunch. So much h

At it again rocking out Maddox Park @missionoaksrec  This park is near and dear to our hearts as Ryan's school Ralph Richardson Center is in background pic 2  Come on out and find us hoping whoever finds these cuties will find a smile   Truly saving lives one smile at a time     #rocksforryan #sads  #sadsfoundation #viaheartproject  #roundtreerock #heartwarrior #awareness  #lqts  #lifeafterloss #childloss #longqtsyndrome  #hearts  #kindnessrocks #parks #parksandrec #missionoaks  #thekindnessrockproject  #disabilityawarenes  #art #getoutside  #paintrocks #maddoxpark
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At it again rocking out Maddox Park @missionoaksrec This park is near and dear to our hearts as Ryan's school Ralph Richardson Center is in background pic 2 Come on out and find us hoping whoever finds these cuties will find a smile Truly saving

Just a friendly reminder that you’ve got this, fuck whatever condition you have because you are bigger than it today and everyday, smile today (even if it’s fake it might make you happy in the end), and keep pushing forward because I can promise you that you have more support through in this than you realize! #rsd #crps #crpsawareness #chronicpain #chronicillnesswarrior #chronicillness #invisibleillness #fuckrsdcrps #pots #eds #gastroparesis #longqtsyndrome #youvegotthis
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Just a friendly reminder that you’ve got this, fuck whatever condition you have because you are bigger than it today and everyday, smile today (even if it’s fake it might make you happy in the end), and keep pushing forward because I can promise you

Hooray found rocks  I left a few rocks for awareness in the #littlefreelibrary  The lucky finder sent us this pic of the find  pic 1 Pic 2 &3 are it's original hiding spot  keep your eyes open you never know where a rock will be    #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #longqtsyndrome #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss #minions  #kindnessrocks  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks
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Hooray found rocks I left a few rocks for awareness in the #littlefreelibrary The lucky finder sent us this pic of the find pic 1 Pic 2 &3 are it's original hiding spot keep your eyes open you never know where a rock will be #rocksforryan #sad

.. After church on Sundays we go to Bolay, a place where the food they serve is entirely gluten-free! for people like me. 🦋 •
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•#heartwarrior #chdawareness #chd #chdwarrior #zipperclub #openheartsurgery #t #heartmom #in #congenitalheartdefect #hlhswarrior #trisomy #longqtsyndrome #specialneeds #hlhs #chdaware #baby #hlhsawareness #ohssurvivor #ohs #miraclebaby #tubie #chdadult #warriorprincess #heartstrong #sads #theluckyfew #fighter #blessed #bhfyp
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.. After church on Sundays we go to Bolay, a place where the food they serve is entirely gluten-free! for people like me. 🦋 • • • •#heartwarrior #chdawareness #chd #chdwarrior #zipperclub #openheartsurgery #t #heartmom #in #congenitalheartdefect #hlh

Tomorrow will be a tough day. It will be 9 years since my dad lost his battle with cancer. Not once did he complain that he was sick. 
Tomorrow I shall be running a local race which pass close to his favourite spot, I shall take a moment to remember. 
And of course I have one song to listen too 
#wakemeupwhenseptemberends 
#runnersofinstagram #triathlete #swimbikerun #rip #fuckcancer #family #longqtsyndrome #run #race #fitness #bestfriend
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Tomorrow will be a tough day. It will be 9 years since my dad lost his battle with cancer. Not once did he complain that he was sick. Tomorrow I shall be running a local race which pass close to his favourite spot, I shall take a moment to remember.

Hi there, folks! It’s been a while since I’ve been fairly active on here! Please accept my outpouring of endless love to make up for it. 

Once I’ve had a bit of time to process the preposterous series of events that unraveled and have dictated my every move in life lately, I’ll be able to give a proper and extensive timeline for any interested parties and friends in regards to my 5-6 week feeding tube fiasco...and yes, you read that correctly. My first #GJtube replacement since last October began at the end of July, and now we’re nearing the end of the beginning week of September. 

I’ve become famous on the surgical floor, the GI floor, and the GI lab with the constant back and forth (4 admissions in over a month for days on end), and needless to say, that’s not exactly how I’ve ever anticipated having my name in lights or how others would talk about me amongst each other.  I know we “can’t always get what we want”, but do we also ever get what we need?

My current answer stands that that’s pretty iffy. 🤷‍️ I hope you enjoy these really attractively dorky images of me from the other day. 

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#Gastroparesis #chronicillness #spoonie #LongQtSyndrome #tubefed #PTSD #disability #medicaltrauma #intestinaldysmotility #raredisease #hospitallife #medicareforall #medicalPTSD
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Hi there, folks! It’s been a while since I’ve been fairly active on here! Please accept my outpouring of endless love to make up for it. Once I’ve had a bit of time to process the preposterous series of events that unraveled and have dictated my ev

Some simple and cute #origami rocks  Inspired by designs seen on pinterest   products used  @sargent_art  @kuretakezig_usa  hoping whoever finds these cuties will find a smile :)       #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sads  #heartwarrior #awareness  #lifeafterloss #cprsaveslives #crane #paperairplane #thekindnessrockproject  #womenrock  #longqtsyndrome #lqts
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Some simple and cute #origami rocks Inspired by designs seen on pinterest products used @sargent_art @kuretakezig_usa hoping whoever finds these cuties will find a smile :) #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sa

Surprise rock drop! Also in #wisconsin #longqtsyndrome #sadsfoundation
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Surprise rock drop! Also in #wisconsin #longqtsyndrome #sadsfoundation

Hooray found rock  This cutie was found in Crumlin Road Gaol (the prison in Belfast, Ireland )  The lucky finder sent us this pic of the find and will rehide at another time  pic 1 Pic 2 &3 are it's original hiding spot  Huge thanks to our friend Jan Macharro for rocking out #ireland for us   all pics repost  #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #longqtsyndrome #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss #hearts #kindnessrocks  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks  #belfast
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Hooray found rock This cutie was found in Crumlin Road Gaol (the prison in Belfast, Ireland ) The lucky finder sent us this pic of the find and will rehide at another time pic 1 Pic 2 &3 are it's original hiding spot Huge thanks to our friend Jan

Guess where in #wisconsin I left this lovely little rock from @rocksforryan  #longqtsyndrome #sadsfoundation
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Guess where in #wisconsin I left this lovely little rock from @rocksforryan #longqtsyndrome #sadsfoundation

So happy to see this! Every school should have one and everyone should be certified in CPR and AED. #longqtsyndrome #longqtfamily #substituteteacherlife #substituteteacher
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So happy to see this! Every school should have one and everyone should be certified in CPR and AED. #longqtsyndrome #longqtfamily #substituteteacherlife #substituteteacher

A little Thursday intro for those that are new around here. 
I’m Krysten.

I work in advertising by day, but I am currently on Mat Leave with my 2nd. (And because I am lucky enough to be 🇨🇦 we get a 12-month Leave). I am living that no-sleep, dry-shampoo, mom-life, taking care of Hank (4 months) and Alice (3 years). .
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I have #longqtsyndrome, a type of heart arrhythmia. I was diagnosed at 17 and got my first pacemaker/defibrillator at 18. I am normally pretty healthy and generally symptom-free, but the postpartum period definitely impacts my condition. So I am working on rehabbing, but it’s a long road. I have recently gone plant-based and eliminated coffee. And I am slowly working on rebuilding my cardiovascular strength with exercise. (I used to run marathons and triathlons pre-kids so I am hopeful I can back to that one day). .
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Both of my kids are followed at Sick Kids to see if they develop #longQT. My daughter has always had clear testing. But my son’s initial ECG at 24-hour old was questionable, so he has been taking betablockers preventatively to ensure he is protected. And I am experiencing my condition from a whole other perspective - as the caregiver. (Which is definitely the harder role)

I have been married for 11 years. .

I am a feminist in the true sense of the word, which means I believe in equality for everyone. No one is free, unless we are all free. 
I don’t believe in guns. 
I believe in science. 
I am spiritual, but I am not religious. 
And we have a Westie, named Clark.

Tell me something I might not know about you?!
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A little Thursday intro for those that are new around here. I’m Krysten. I work in advertising by day, but I am currently on Mat Leave with my 2nd. (And because I am lucky enough to be 🇨🇦 we get a 12-month Leave). I am living that no-sleep, dry-sha

Walking into Day 2 like ‍️
Super proud daddy! Isla had an even better day today; no whinging at all, played with the sensory toys, joined in with the music, interacted with some of her classmates and gave the teaching assistant some lovely cuddles  She was so good she got her first certificate for wonderful joining in 🥰
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#thelongcutie #toddlersofinstagram #longqtsyndrome #rhythmrebels #lqt #lqts #longqt #longqt3 #lqt3 #daddysgirl #daddyslittlegirl #lqtsucks #mexiletine #cardiac #firsticd #nurseryuniform #millwoodprimaryschool #firstcertificate #prouddaddy #runningintoschool
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Walking into Day 2 like ‍️ Super proud daddy! Isla had an even better day today; no whinging at all, played with the sensory toys, joined in with the music, interacted with some of her classmates and gave the teaching assistant some lovely cuddles S

Recovery run day. 
Did some hard leg work yesterday plus teaching yoga so the legs were not up for a hard run today. 
Rather than have a day off and do nothing, I decided to go on a recovery run which is at a slower pace than your normal run. 
However, just because the pace is slower, don't think that you aren't getting as much benefit as when you run fast. 
You will spend longer In the fat burning zone as your body uses fat stores for fuel. 
You will also increase your base mileage by training your slow twitch muscles which are responsible for endurance. 
Some running experts claim that if you run 5 times a week, 3 of them should be at a slower pace........ #run #recovery #cardio #longqt #longqtsyndrome #movement #movementmedicine #running #crosscountry #crosscountryrun
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Recovery run day. Did some hard leg work yesterday plus teaching yoga so the legs were not up for a hard run today. Rather than have a day off and do nothing, I decided to go on a recovery run which is at a slower pace than your normal run. Howeve

Hooray found rock  This cutie has been sprinkling kindness all over the place  The 1st lucky finder sent us this pic of the find (Deadwood, SD), and was kind enough to leave for another lucky finder pic 2 - 2nd finder wil be rehiding spreading the joy and awareness  These were originally left by our friend Michele Fisher who rocked out while traveling  We love our rocking community and all the rock support and love locally   repost of pics from our Facebook page  #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #longqtsyndrome #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss #sprinkles  #kindnessrocks  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks  #northdakota
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Hooray found rock This cutie has been sprinkling kindness all over the place The 1st lucky finder sent us this pic of the find (Deadwood, SD), and was kind enough to leave for another lucky finder pic 2 - 2nd finder wil be rehiding spreading the jo

Today was Isla’s first afternoon in Nursery! She got a bit tired towards the end and maybe a bit hangry as she’s now demolishing biscuits (when home she dragged me to the high chair to indicate she was hungry, she obviously doesn’t have that at Nursery). However, she went in happily and the first thing she did was hug the school nurse and then her teacher. She’s spent the afternoon exploring her new surroundings and I was told she would have stayed in the sensory room all day if she could have. A successful start to a new chapter for Isla  .
#thelongcutie #toddlersofinstagram #longqtsyndrome #rhythmrebels #lqt #lqts #longqt #longqt3 #lqt3 #daddysgirl #daddyslittlegirl #lqtsucks #mexiletine #cardiac #firsticd #nurseryuniform #millwoodprimaryschool #firstday2019 #firstdayofnursery #firstdayinnursery #firstdayofschool #firstday
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Today was Isla’s first afternoon in Nursery! She got a bit tired towards the end and maybe a bit hangry as she’s now demolishing biscuits (when home she dragged me to the high chair to indicate she was hungry, she obviously doesn’t have that at Nurse

Day 4: Power Yoga is what has really helped me find my own power. Dealing with chronic illnesses can really make you feel powerless and out of control. Yoga has helped me work through that and feel more powerful in my body.
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 Where do you find your power?
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#rosegoldgoddesschallenge #rosegoldgoddess #Yoga #yogi #backbend #sunset #yogaeverydamnday #chronicillness #longqtsyndrome #icd #pacemaker @iamsahararose
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Day 4: Power Yoga is what has really helped me find my own power. Dealing with chronic illnesses can really make you feel powerless and out of control. Yoga has helped me work through that and feel more powerful in my body. . . Where do you find you

For Kevin's birthday we got steak wasted @cattlemens_steakhouse  Big #porterhousesteak 2 lbs of #steak goodness and little 20.00 Teusday special #tbone  of course our rocks can't say no to the teusday #longislandicedtea 5.00 special  #rocksforryan #viaheartproject  #sadsfoundation #roundtreerock  #longqtsyndrome #heartwarrior #awareness  #community  #lifeafterloss #childloss #thekindnessrockproject  #kindnessrocks #changetheworld  #california  #womenrock  #pictureoftheday #sacramentoeats #steakme  #foodie #foodporn #nomnom #goodeats  #foodofinstagram  #getinmybelly #forkyeah
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For Kevin's birthday we got steak wasted @cattlemens_steakhouse Big #porterhousesteak 2 lbs of #steak goodness and little 20.00 Teusday special #tbone of course our rocks can't say no to the teusday #longislandicedtea 5.00 special #rocksforryan #v

Workout 39/100 Meltcon - 10 moves, 1 minute each NO breaks. 2 minutes break, then do it ALL again.
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This means high heart rate (almost the entire time). Normally I would have turned it off. But I have chosen to Face Everything And Rise. •••
Having a genetic heart condition #longqtsyndrome which has caused me to have a pacemaker/defibrillator implanted (2011) hasn’t been easy. •••
I was active before the diagnosis and surgery. After surgery, I was still active but then was shocked because of a high heart rate. This happened twice . It made me so scared to ever workout again. I knew I had to do something.
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It took a long time (7 1/2 years!) which also means a lot of weight gain. •••
Here I am: Stronger. Braver. Healthier. 
Because of @beachbody @autumncalabrese @joelfreemanfitness @jerichomcmatthews I AM more comfortable getting my heart rate high! 
#beachbodycoach #longqtstrong #mm100 #faceyourfears
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Workout 39/100 Meltcon - 10 moves, 1 minute each NO breaks. 2 minutes break, then do it ALL again. ••• This means high heart rate (almost the entire time). Normally I would have turned it off. But I have chosen to Face Everything And Rise. ••• Having

Health Update: (for those who have been asking) I have been plant-based for the last 3 weeks. I have still had one serving of meat a week (2x fish & 1x chicken) but I have been finding the transition easier than I expected. I have swapped out coffee for matcha lattes. And this past weekend I started to reintroduce exercise - which was humbling. I have a long way to go to get back to where I was before this pregnancy, but I am noticing improvements. My ventrical pacing is decreasing, so I am hoping the trend continues 🤞I am trying not to be frustrated about where I *think* I should be. And I am trying not to focus on how far away I feel from where I used to be fitness-wise, but it is hard. Patience is a huge part of the rehab process, and it’s definitely something I struggle with. I am trying to simply focus on what I can control each day, and trust the process #progressisprogress #theprocessisslowbutworthit #cardiacrehab #longQT #longqtsyndrome
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Health Update: (for those who have been asking) I have been plant-based for the last 3 weeks. I have still had one serving of meat a week (2x fish & 1x chicken) but I have been finding the transition easier than I expected. I have swapped out coffee

Our rocks are on new adventures these two were dropped in #dublin  So thankful for our friend Jan Macharro rocking out #europe and helping us spread #longqtsyndrome awareness world wide  1st pic on board the @princesscruises - 2nd pic #minion on a train ride  Hoping to bring smiles and awareness to all those who find  If anyone wants to bring some of our rocks on traveling adventures just let us know   all pics repost    #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sads  #heartwarrior #awareness #heshouldbehere #lqts  #community #helpingothers #lifeafterloss #princesscruise  #thekindnessrockproject  #changetheworld  #changelives #womenrock  #travel  #minions  #getoutside  #sacramento #adventure #travel
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Our rocks are on new adventures these two were dropped in #dublin So thankful for our friend Jan Macharro rocking out #europe and helping us spread #longqtsyndrome awareness world wide 1st pic on board the @princesscruises - 2nd pic #minion on a tr

Despite all of the pain, you have to make the most of your life! I know that’s been said to you many times (more than you can count probably) and it’s easier said than done, but trust me once you’re really able to accept your new normal is when you start truly living your life (in an adaptive way for me). For the first 3 years after being diagnosed I really had lost all hope and quite frankly wanted nothing to do with the “normal world”. I started isolating. As I got older and maturer I was able to see that every single person is dealing with something, whether it’s big or small, or just that way to them, we all have things to weigh us down. When you throw into the mix some chronic illness, especially uncommon conditions it’s hard to stay positive, especially at a young age. You start asking a million different questions to yourself, why do I have to be the one going through this? Why can’t anyone see what’s going on with me? Will this ever end? Everyone has a million questions on their future, but when you’re chronically ill it’s even more unpredictable, and honestly very scary to think about. It took me a long time of being with myself and knowing despite what some doctors say I am not ever faking this. I was able to self motivate to at the very least get out of the house daily and do some PT at home. And things slowly started looking happier. I was still just as sick as before, actually my health had gotten worse during this time but I mentally was happier and more stable. I started doing more and pushing myself to go out when I know I will regret it later, why should I just lay in bed all day moping, when there’s a whole world out there to explore and I would like to see as much of it as I can before my time comes?!As do most people. So I can’t exactly pinpoint my aha moment when I finally came to grips that this is my life, but it will never change the way I live or smile. So SMILE! Smile when you’re so sad you can’t even cry. Smile when you’re so happy you feel like you’re jumping out of your skin. And most importantly smile when you feel like you can’t, because that little smile could change how you feel and the outcome of the whole day!
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Despite all of the pain, you have to make the most of your life! I know that’s been said to you many times (more than you can count probably) and it’s easier said than done, but trust me once you’re really able to accept your new normal is when you s

We're so excited to be in the #bayarea in two weeks hosting a paint station   We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject and also paint a rock for awareness while at it swipe for event info   Truly saving lives one smile at a time  products used @sargent_art @posca_usa   #rocksforryan #sads  #sadsfoundation #longqtsyndrome #heartwarrior  #roundtreerock  #viaheartproject  #lqts #heartwarrior #awareness  #community #helpingothers #lifeafterloss #childloss #nevergiveup #cprsaveslives  #kindnessrocks #thekindnessrockproject  #changetheworld #heartmonth  #scaaawareness #callpushshock #cprsaveslives
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We're so excited to be in the #bayarea in two weeks hosting a paint station We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject and also paint a rock for awareness while at it swipe for event info Trul

Fun fact: before my last ICD shock I was not a coffee fan... and I tried! I came of age in the era of Seattle coffee shops and Friends. I couldn’t get in to it.  After that shock?  I started craving it. And I drink it black every. Single. Morning. 
My theory is that the old me didn’t make it through the ventricular tachycardia and I jumped in to an parallel universe and this Kristie LOVES coffee. 🤷‍️️
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#coffeetalk #coffee #strongcoffee #greeneyes #longqtsyndrome #bionicwoman #icdlife
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Fun fact: before my last ICD shock I was not a coffee fan... and I tried! I came of age in the era of Seattle coffee shops and Friends. I couldn’t get in to it. After that shock? I started craving it. And I drink it black every. Single. Morning. M

Hooray found rock  This cutie was found at #petco  This was left by our friend @morguemuffin  We are so thankful for the support and thoughtfulness of those who make our rocks for awareness and spread our message world wide  We sent some special thank you rocks in a super cute bag by our friend @utinnicrafts  We think the bag is as sweet as our friends Laura and Ren  #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #longqtsyndrome #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss #hearts #kindnessrocks #hearts  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks
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Hooray found rock This cutie was found at #petco This was left by our friend @morguemuffin We are so thankful for the support and thoughtfulness of those who make our rocks for awareness and spread our message world wide We sent some special than

Hooray found rock  This cutie was found outside @cmmpleasanton  They sent us this gorgeous pic of the find, and our rock couldn't have found a more perfect home  This beautiful rock was created by the talented  @trinaannv family  We love our rocking community and all the rock support in spreading our message of #longqtsyndrome awareness   #rocksforryan #sadsfoundation #lqts  #viaheartproject #roundtreerock #longqtsyndrome #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss #pleasanton  #kindnessrocks #hearts  #thekindnessrockproject  #womenrock #found #foundrock #getoutside  #travel #travelingrocks  #colormemine
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Hooray found rock This cutie was found outside @cmmpleasanton They sent us this gorgeous pic of the find, and our rock couldn't have found a more perfect home This beautiful rock was created by the talented @trinaannv family We love our rocking

These rocks were created by our friend @trinaannv  Her adorable and talented kiddos created all these after finding one created by a guest painter previously -pic 2 Nothing touches my heart more than when others think of Ryan and create rocks to bring awareness to #longqtsyndrome and keep his memory alive  Hoping whoever finds these cuties will find a smile :)  So thankful for the support and love of our rocking community  #pleasanton peeps keep an eye open you never know where a rock will be     #rocksforryan #viaheartproject #roundtreerock #sadsfoundation #sads  #heartwarrior #awareness  #community #lifeafterloss #cprsaveslives  #scaaawareness  #thekindnessrockproject  #womenrock #helpingothers #kindnessrocks  #lqts
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These rocks were created by our friend @trinaannv Her adorable and talented kiddos created all these after finding one created by a guest painter previously -pic 2 Nothing touches my heart more than when others think of Ryan and create rocks to brin

Why did I do the Million Metre Challenge? 
Found this video from Thames Valley TV
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#health #fitness #healthy #wellness #motivation #gym #workout #healthylifestyle #fit #lifestyle #kids #nutrition #healthyfood #training #weightloss #exercise #fitnessmotivation #bodybuilding #food #cardiacriskintheyoung #diet #cry #instagood #life #healthyliving #c-r-y #healthcare #longqtsyndrome #millionmetrechallenge
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Why did I do the Million Metre Challenge? Found this video from Thames Valley TV * * #health #fitness #healthy #wellness #motivation #gym #workout #healthylifestyle #fit #lifestyle #kids #nutrition #healthyfood #training #weightloss #exercise #fitne

Tack @plansverige för att jag får springa med er och #förhenne  Stolt! Gör skillnad för flickors framtid du också! Bli flickfadder eller swisha till: 123 023 68 51 
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När jag inte längre kan springa för PB pg a mitt hjärtfel, får jag springa för andra - viktigare - saker  Dagens tid -> var min näst sämsta (!) 10 km-tid. Knappt bättre än vid loppdebut 2015. Klart det känns ... tråkigt  Jag jobbar på att acceptera. Var lite förkyld så jag var oxå extra försiktig  (Plats 1 139 av 9 699. Kul för egen info)
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#rositaresertränar #hjärtfel #longqtsyndrome #planinternational #plansverige #älskarattspringa #girls #tjejmilen #tjejmilen2019 #tjejer #tjejersomspringer
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Tack @plansverige för att jag får springa med er och #förhenne Stolt! Gör skillnad för flickors framtid du också! Bli flickfadder eller swisha till: 123 023 68 51 . När jag inte längre kan springa för PB pg a mitt hjärtfel, får jag springa för andr

FRIDAYYYY Echo and I are spending our Friday night teaching a little #cpr #aed and #firstaid to local preschool teachers! Wild, right? There’s nothing I’d rather be doing right now- I love spending my time training people to be #heartheroes ! ️️️CPR is so easy to learn. Let me know if you’re interested in taking a class! ️🥰#savelives #beahero #whynot #lifeiswhy #medicine #survivor #comasurvivor #suddencardiacarrestsurvivor #longqtsyndrome #silverlabrador #silverlabsofinstagram #silverlabsquad #labsofinsta @american_heart #heart #medicine
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FRIDAYYYY Echo and I are spending our Friday night teaching a little #cpr #aed and #firstaid to local preschool teachers! Wild, right? There’s nothing I’d rather be doing right now- I love spending my time training people to be #heartheroes ! ️️️CPR

We’re home! 
No ectopics in 24 hours but still 100% atrial pacing and 99% ventricular pacing. This is bad for battery life but not as draining on it as having to charge or shock frequently so provided she stays good we’ll just need a battery change in 2.5 years. 
The excitement of being discharged obviously tired her out before we were finally given our meds to get home  I’m sure the nurses in this group will tell me it’s much more complicated to sort TTOs than ring pharmacy and get them to throw boxes of meds in a bag, but honestly how can it take hours!?
It’s been a tough 12 days to be fair so I’m really looking forward to some undisturbed nights and once again my own bed is the comfiest in the world!
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#thelongcutie #toddlersofinstagram #longqtsyndrome #rhythmrebels #lqt #lqts #longqt #longqt3 #lqt3 #daddysgirl #daddyslittlegirl #lqtsucks #mexiletine #cardiac #firsticd #fucktorsades #hospitallife #greatormondstreethospital #happygirl #bearward #holtermonitor #pacemakerclub #finallyhome
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We’re home! No ectopics in 24 hours but still 100% atrial pacing and 99% ventricular pacing. This is bad for battery life but not as draining on it as having to charge or shock frequently so provided she stays good we’ll just need a battery change i

Hugely grateful to colleagues for baking and buying in support of my cycle this pay day. Over 100 miles of training coming up this weekend! Thanks for all the donations so far - just 18 days to go! x https://www.justgiving.com/fundraising/Amy-Lees2019 #fundrasing #bakesale @cardiacriskintheyoung #longqtsyndrome
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Hugely grateful to colleagues for baking and buying in support of my cycle this pay day. Over 100 miles of training coming up this weekend! Thanks for all the donations so far - just 18 days to go! x https://www.justgiving.com/fundraising/Amy-Lees201

We are so excited to be hosting a paint station at this event, Bay area friends   We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject and also paint a rock for awareness while at it swipe for event info   Truly saving lives one smile at a time  repost of pics   #rocksforryan #sads  #sadsfoundation #longqtsyndrome #heartwarrior  #roundtreerock  #viaheartproject  #lqts #heartwarrior #awareness  #community #helpingothers #lifeafterloss #childloss #nevergiveup #cprsaveslives  #kindnessrocks #thekindnessrockproject  #changetheworld #heartmonth  #scaaawareness #callpushshock #cprsaveslives
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We are so excited to be hosting a paint station at this event, Bay area friends We encourage everyone to take advantage of the FREE cardiac screening hosted by @viaheartproject and also paint a rock for awareness while at it swipe for event info

Had a run to do as today’s training session. 
Ran in my new shoes, ASICS dynaflyte 3. Wow great responsive shoe at speed. 
Managed to clock my fastest 5k this year and hopefully I can hold that pace for my next triathlon 🤞
#triathlon #triathlontraining #asicsdynaflyte3 #newrunshoes #running #triathletelife #trilife #fitnessmotivation #swimbikerun #runnersofinstagram #globaltriathlonnetwork #speedworkout #longqtsyndrome
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Had a run to do as today’s training session. Ran in my new shoes, ASICS dynaflyte 3. Wow great responsive shoe at speed. Managed to clock my fastest 5k this year and hopefully I can hold that pace for my next triathlon 🤞 #triathlon #triathlontraini

Another day of rocking the Holter monitor 🤗 Provided it doesn’t show anything naughty we should be good to come home on the new meds regime. They’ve tried an ICD tweak to try and preserve battery life (the changes they made previously resulted in 100% atrial pacing and 99% ventricular pacing) as it currently stands at 2.5 years 🤦‍️. We’d rather get another 4 years out of it but if she needs the extra pacing then so be it, the team will have another look tomorrow and send us home on whatever works best for Isla.
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#thelongcutie #toddlersofinstagram #longqtsyndrome #rhythmrebels #lqt #lqts #longqt #longqt3 #lqt3 #daddysgirl #daddyslittlegirl #lqtsucks #mexiletine #cardiac #firsticd #fucktorsades #hospitallife #greatormondstreethospital #happygirl #bearward #holtermonitor #pacemakerclub
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Another day of rocking the Holter monitor 🤗 Provided it doesn’t show anything naughty we should be good to come home on the new meds regime. They’ve tried an ICD tweak to try and preserve battery life (the changes they made previously resulted in 100

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