pulmonaryhypertension chronicillness chronicpain scleroderma dance spoonie ecmo pulmonaryfibrosis autoimmunedisease chdawareness hype invisibleillness lungs portugal spoonielife supreme supremeny systemicsclerosis varsay akci chdwarrior chronicillnessawareness diabetes heartdisease organba pacemakerclub pulmonaryhypertensionawareness 1in100 chronicdisease righttochoose
I got my stickers off today! Officially off oxygen!!! #maxleyrussell #12monthsold #1yearold #honeyedheart #chd #chdawareness #heartdefect #avcanal #baby #cutebabiesofinstagram #instagrambaby #firstborn #onlychild #openheartsurgery #widow #surgery #recovery #heartwarrior #myhero #pulmonaryhypertension #interstitiallungdisease #ecmosurvivor #ecmo #1in100 #thisismotherhood #heartmom #gjtube #tubie
Won't he do it?! Noah has been on medications his entire life. He went from 2 heart and lung medications twice a day to about 5 different ones and some of them had to be given 2-3 times a day. I cried at the hospital after his second surgery when they increased his meds. I felt God was putting too much on me. I could barely keep up with the two meds he was on prior to his surgery and now I had to be responsible for more medications. Anyone who has a child on life saving medications knows that responsibility. I had alarms set on my phone in the event that I stepped away and someone was home with him. I fought insurance companies for coverage of these thousand dollar medications. His doctor even had him admitted in the hospital when his insurance wouldnt cover one of his medications. I've missed doses that I felt someone else gave him and then the guilt and fear of how that would affect his health. To see Noah now on ONE medication and it's an acid reflux medication not a heart or lung medication is a miracle to me. He also takes two vitamins but what kid doesnt? I cried then and I cry now. This time the tears are just of gratitude. Trust him people...even when it seems unfair. HAVE A BLESSED SUNDAY!
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#ds #dsb9aby #downsyndrome #pulmonaryhypertension #1in100 #Tri21 #Trisomy21 #extrachromosome #chosenfew #extrachromosomeextracute #nothingdownaboutit #downrightperfect #cutiepie #newborn #zipperclub #heartwarrior #multicysticdysplastickidney #downrightperfect #rockyoursocks #downsyndromerocks #downsyndromelove #avcanalrepair #chdawareness @nycgigisplayhouse
Who's also dealing with this madness?! ♀️♀️
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#chdawareness #heartmonth #heartmom #ds #dsb9aby #downsyndrome #pulmonaryhypertension #1in100 #Tri21 #Trisomy21 #extrachromosome #chosenfew #chicksdigscars @bourgiebabies @tinysuperheroes @frobabies #upsideofdownsyndrome @cutekids_hub #extrachromosomeextracute #nothingdownaboutit #downrightperfect #cutiepie #newborn #zipperclub #heartwarrior #downrightperfect #rockyoursocks #downsyndromerocks #downsyndromelove #chdawareness #chd #chdwarrior #vsd #heartmom @alilsomethingextra321 #sindromededown
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