Liste des hashtags les plus populaires par sujet #MEDICALLYCOMPLEX

After continual high fevers we came back to the paediatric ward this morning for our follow up appointment with the doctor on duty. Initial labs are suggesting there could be a possible UTI, but it’s not conclusive. However we do know Maddison is fighting some sort of infection. They’ve done more bloodwork and ran a broad-range antibiotic intravenously to help her little body fight this thing. . I knew when I left the house this morning we’d be gone for the majority of the day (I’m glad I packed snacks!) No idea how long we’ll be here for, but we will be waiting for the labs to come back, hopefully they will have some answers and we can properly treat this thing! Maddison has been a trooper, only fussing for the bloodwork. She just wants lots of cuddles and some Paw Patrol. . . . . . #specialneedsmom #specialneedsjourney #medicalmama #medicalmom #momlife #mommyhood #momsofinstagram #honestmotherhood #motherhoodinspired #thisismotherhood #motherhoodunplugged #bekind #gtube #tubie #tubiebaby #tubefed #tubefedbaby #feedingtube #medicallycomplex #developmentaldelay #globaldevelopmentdelay #cerebralpalsy #cpwarrior #fighter

So my hubs is finally back on 1st so omg this shift I push family time hard cause we only have 30 days till he goes to night shift and I feel like. Single mom hahahah Anyways I decided we would order pizza and watch a movie all snuggled up in the floor ! Alex just had to have chips and salsa! Well I was I was holding Gibson and had gotten into the movie cause it was a thriller ! Well Alex calmly said “ savannah don’t freak out but turn around , don’t react “ Cause he knows I wanted to shout and scream ! We have been working on this for months and months ! If I give him food he will try it but he has never been curious enough to pick up food on his own and put it to his mouth !!! This baby was sitting there watching his stupid daddy ( sorry he is going through a major daddy phase I’m not taking it well ) eat a chip and just followed suit ! So yep we paused that movie and watched him for another 15 mins ! We even got him to dip the chip and put it to his mouth ! I cried there I said it ! This was a moment ! He is so smart ! Omg I’m just so proud of this , y’all I went to bed with a huge grin on my face and I just kept giggling ! No one tells you the joy that washes over you as a special needs mom when your child reaches a milestone ! I know some people are going to watch this and not get it ! But this is HUGE For us !!! It’s a simple task yes , but this is a task that is difficult for him ! So small task BIG VICTORY! I love that this kid has taught me it’s the little things , that turn into big things and big things turn into huge ! So here we go baby , making progress exton baby !!! #extraexton #proudmomma #downsyndrome #downsyndromelove #milestones #yesicried #chdwarrior #mendedheart #medicallycomplex #homiewithextrachromie #therapyisworking #myhero #mymiracle #trachkid #ventkid #theluckyfew #rockstar

Exy likes to move it , move it ! #extraexton #moveitmoveit #danceparty #getitboy #feeltherythm #imsoproud #joy #downsyndrome #downsyndromelove #t21 #theluckyfew #homiewithextrachromie #chdwarrior #trachkid #ventkid #medicallycomplex #yeshecan #mydancingbaby #yassssss #upsyndrome #welcometoholland #kidsofinstagram

I literally can’t find anything exton won’t dance too ! #extraexton #downsyndrome #downsyndromelove #t21 #upsyndrome #homiewithextrachromie #theluckyfew #trachkid #ventkid #chdwarrior #mendedheart #mymiracle #medicallycomplex #babygotmoves #gingersnaps #dancingfool #yeshedid #boymom #thesebabiesofmine #choosejoy

This child ... he has changed my life ! He is a miracle and every day in the middle of his toddler attitude , there is a moment like this ! He reminds me , he is my hallelujah! He is ! I was trying to catch him doing a cute wiggle and I catch this ! Doing praise hands ! I’m so proud to be his mother and so grateful God let me keep him here with me ! Goodness I had not planned on crying my eyes out this early ! I have no idea what I did to deserve my boys ! Being their mother is amazing ! #extraexton #mymiracle #myhero #theluckyfew #downsyndrome #medicallycomplex #welcometoholland #trachandvent #t21 #myheart #upsyndrome #homiewithextrachromie #extra #praise #worship #momofboys #proudmomma #mywholeworld #thesebabiesofmine #tubie #chdwarrior #zipperclub #heartofawarrior #littlefighter #ventkid

MEDEK Day 2! Insta only lets me add 10 pics/vids but I took over 100 today! These boys worked SO hard today with two sessions of CME! They both got tired about halfway through but pushed on to finish strong (except when Axel fell asleep standing up in the morning). . I’ve noticed a big difference in Axel’s right hand. He’s still so reluctant to use it to move/support himself (slide 8) but it used to always be fisted with thumb in (CP thing). Today it’s been open, thumb out ALL day without even wearing his thumb splint. He’s also reached for toys with it without delay. Wow! . Highlights of today included the boys trying a #theratogs suit (supports some muscles/isolates others) and Jaxon really improving on his extension vs yesterday. Though his right side is so tight and he has trouble using it. But, he stood up straight and balanced on the board today with only leg support (the wraps around his legs in 1st vid)! Amazing! . Axel continues to impress with his pushing up and squat to stand! . The boys were pretty refluxy today and lots of pukes in between sessions (like usual), and not the best nappers. Pretty much all around cranky butts. Hoping they get a nice long sleep to rest up for day 3 tomorrow. It’s intense and sometimes the crying gets to me a bit, but this therapy is truly so beneficial for them. ❤️

This is still one of my very favorites ! And where his love for baby shark all began ! Time slow down ! #extraexton #babyshark #downsyndrome #downsyndromelove #bathtime #timeslowdown #t21 #theluckyfew #homiewithextrachromie #upsyndrome #medicallycomplex #welcometoholland #chdwarrior #mendedheart #trachkid #ventkid #tubie #myhero #miracleshappen #downrightperfect

One of the questions I'm asked most frequently is advice on getting tubes or other medical devices. My favorite answer is to make it your own and find the wildflowers. ••• What do I mean by that? ••• If you've been here awhile, you'll know Wildflowers In Her Hair means finding joy in the little things. My EDS makes my joints floppy, which affects my mobility. So I use a walker, crutches, or my wheelchair to move around. My gastroparesis and mast cell disease are the reasons I have a feeding tube in my tummy. Decorating medical things is one way I find the wildflowers, or, little happies. ••• My new purple walker is covered in flowers and lights. My AFOs sport angel wings to remind me that God sends angels to watch over me. My feeding tube is always surrounded my colorful tubie pads. My medical backpack has encouraging pins that read "Courage, dear heart" and more! ••• When there's a way to bring a bit of happy into an otherwise tough situation, DO IT! Paint your crutches, hang lights in your hospital room, write an encouraging thought on your medical binder, put stickers on your wheelchair, decorate your infusion pump. There might not be a way to make a surgery or use of a medical device less painful, but you sure can make it more fun. ••• When life gives you hospitals, put flowers in your hair. #beDAZZLEme @watercolor_me_impressed

Exton still isn’t walking .... so momma has to play dirty ! He WILL NOT walk for me , But he WILL walk for ranch ! I’m desperate, and probably delirious but hey we are making strides NOW ! Any ranch companies want to give him a job hahahah #extraexton #willwalkforranch #ranchislife #walkalready #momdiaries #motherhood #downsyndrome #medicallycomplex #ventkid #trachkid #gottadowhatyougottado #parentingwithstyle #theluckyfew #t21 #downsyndromelove #downrightperfect #futurespokesperson? #homiewithextrachromie #able #worthy #chdwarrior #tubie #mymiracle