Liste des hashtags les plus populaires par sujet #METABOLICDISORDER

Giving the babes all my snuggles tonight before heading to DC bright & early! ✈️ Cannot THANK YOU all enough for the abundance of love & support on my last post. I will definitely be traveling with a heart more full than my luggage! (That’s huge bc ya girl can pack a bag ) . . Can’t wait to share some #visitdc adventures! I’ve already gotten some great recommendations (thanks!), but pop yours below if there’s a place I must visit, drink I must try, etc. in my 24-hour DC trip!! #lobbylikeamother #radmama #supportyourlocalradmama #newbornscreeningsaveslives #genetictestingsaveslives #rareis #pyridoxinedependentepilepsy #raremom #rarewarrior #rarelife #rarediseaseadvocate #raredisease #rarediseases #rareadvocate #inbornerrorofmetabolism #metabolicdisorder #hopeforharlow #stayradhavehope #geneticdisorder #careaboutrare #bipartisan #nonpartisan #rareparty #showyourrare #epilepsymom #epilepsywarrior #epilepsylife #epilepsydoesnthavejack

Social life part two: friends PKU never held me back from joining new clubs, sports teams or making friends. I prefer to only disclose my PKU on a need-to-know basis. This allows others to get to know ME, NOT my disorder. Your child does not need to be a walking billboard. Don’t get me wrong, I am not ashamed of PKU but strive not to let it define me. You and your child will find ways to communicate with others when you feel ready. • • I can understand parents’ concerns about the effect of PKU (or another metabolic disorder) on their child’s social life. At this point, it is your life. You pour an absurd amount of time and energy into planning and preparing so your child may live a healthy life. ‼️ Good news- it gets easier. As your child grows, they will develop independence. Let them order at the restaurant. If it comes out wrong, they will learn quickly how to communicate the limitations of the diet effectively. Help them prepare low pro food to bring with them to social events. Provide support but let them experience these little challenges in a safe, controlled environment. • • I have been so blessed with a wonderful friend group through the various stages of life. These friends have been some of my biggest support systems, even to this day. Sometimes friends and family worry more about my diet than I do. They have seen my biggest challenges and been there through it all ❣️ From high school sports teams ➡️ homecoming dances ➡️ prom ➡️ college ➡️ nursing school ➡️ sorority ➡️ young, single professional ➡️ grad school ➡️ marriage ➡️ making a home, PKU has not made a difference. • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

Working with elevated levels all week after a viral illness that quadrupled my levels and then delicious brussels and artichokes on Easter Sunday. By mid week all I wanted was a large, veggie loaded green salad. Fresh rolls satisfy my veggie cravings but are still super low in phe. There are 70 mg of phe for two rolls stuffed full with green leaf lettuce, cucumber slices, a scoop of low pro noodles with coconut aminos and fresh mint leaves. Add whatever veggies you want and top with sweet chili sauce for all the flavor and fresh veggie feels. • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

“Light up your face with gladness, hide every trace of sadness. Although a tear may be ever so near, that's the time you must keep on trying! Smile, what's the use of crying? You'll find that life is still worthwhile if you just smile” . . . . #angelmom #angelmama #faith #mommyofanangel #maywemeetagain #stillstanding #neonatalloss #neonataldeath #glutaricacidemiatype2 #ga2 #glutaricaciduriatype2 #metabolicdisorder #genetics #raregeneticdisorder #ilovesomeonerare

Surrounded by chicks. . . We have such a happy memory from last Easter b/c Jack had just been released from the hospital a week prior and we were so hoping to have our first happy Easter together! And we definitely did thanks to a really special Trotter family tradition that I’m so happy I married in to!☀️ . . Every (or most every) Easter since Cliff and I have been together, I’ve gone with the fam to his Aunt Martha’s house for a super special spring celebration. There is the most incredible Easter egg hunt for the Trotter kiddos, both big and small. The big kids like Cliff, his siblings, and cousins would hunt for tiny liquor bottles before everyone started getting married, plus money and other cool things! There’s even a golden egg AND Rowan found it last year and got like twenty bucks! It’s so much fun now that there are more littles to play and hunt...we are so excited for this Trotter tradition tomorrow!! Can you believe that we even sweet little chick chicks at the last Trotter Easter celebration? Jack was obsessed...scroll to see a sweet video of him giggling at an escaping little peep! ☺️ . . If you watch the little video clip, you’ll also see the @ybike.sa in the background, but Jack was 20-months-old and still not really using it and definitely was not on his feet. The @gonumotion #kayewalker + @surestep.products #SMOs absolutely changed this kiddo’s life! . #peeppeep #littlepeeps #trottertraditions #jackjacklove #jackjackthrowback #rowanandjack #pyridoxinedependentepilepsy #hypotonia #hypotoniaawareness #easterfun #eastertraditions #epilepsywarrior #rarewarrior #inbornerrorofmetabolism #geneticdisorder #metabolicdisorder #delayednotdefeated #epilepsydoesnthavejack

Big sissy was so much help at @childrensatl while Jack got blood work and urine cultures. She was horrified by the #urinebag we had to put on Jack (I was horrified that the nurse said “is he not potty trained?” He’s not even 3 yet that’s pushing it for any kid.) Ro even helped give a #tubefeed so we could get the urine flowing faster and get out of there! Project make Jack pee took wayyy longer than it should have...even his bladder is stubborn. . . Meanwhile, Jack was more concerned with the important stuff like stickers, arm pain, and shiny balloons! ✨#toddlerpriorities . . Scroll to the end to see the sassiest pic of Rowan ever. I have no idea where she got that look. #specialneedssiblings #gtube #iloveatubie #tubiewarrior #tubielife #catandjackadaptive #jackjacklove #rowanandjack #catandjackfortarget #childrenshealthcareofatlanta #surestepsmos #surestep #ikikishoes #metabolicdisorder #rarewarrior #epilepsywarrior #epilepsylife #pyridoxinedependentepilepsy #inbornerrorofmetabolism #medicalmama #adore_able #wereallable #genetictestingsaveslives #newbornscreeningsaveslives #raregeneticdisorder #epilepsydoesnthavejack

We are gonna be brave and try to have some Easter fun now that we have Jack better managed than yesterday. Relying on that Motrin/Tylenol switch + extra #pyridoxine to try and keep any #febrileseizures at bay until we can see his Ped tomorrow! . . ☀️It’s such a beautiful day so hopefully the vitamin D will help Jack Jack too! He barely moved yesterday and was completely catatonic for much of the day so I’m wary, but glad to get him on his feet again. Thanks for all the love for my little guy yesterday...my heart was hurting so bad bc we missed such an important celebration w/family. That’s why we’re making the extra effort today! . . PLUS, look what the EB brought Jack (and Rowan)—> @rubysrainbow + @pridesocks Ruby’s Dream Big socks!! I’m pretty in love with these socks and their message so check them out when you have a chance! HAPPY EASTER, my sweet peeps! ☀️ #easter2019 #easterfun #trottertraditions #epilepsywarrior #pyridoxinedependentepilepsy #rarewarrior #feversandseizures #inbornerrorsofmetabolism #wheelchairrapunzel #rubysrainbow #rubysdreambig #pridesocks #ikikishoes #surestepsmos #surestep #kayewalker #jackjacklove #rowaneliza #rowanandjack #aldh7a1 #raregeneticdisorder #globalgenes #metabolicdisorder #epilepsylife #parenthood_moments #epilepsydoesnthavejack

There are a few newbies to this page and I would like to introduce myself. My name is Julia and I have classical PKU. With the support of family and friends (and sorority sisters during a few rough years in college) I have always remained on diet. Ignorance is bliss because once I get a taste of something it’s all over (anyone else relate?!). My diet is a large part of my thoughts but it is not a large part of who I am. ✨ Most do not understand the weight pku carries and that is the way I choose to live. ✨ Make it look easy. Make them jealous of your delicious low protein and healthy food. Don’t WEAR pku like a billboard. Instead SHOW the world your strength and accomplishments in life as those are truly something to celebrate. ✨ You can choose to struggle under the weight of your cross or bear it with dignity like the lord. : @bylaurenkinton

New tube, who dis⁉️ . . This buddy needed a #gtube change so badly and he was so freaking good for it this evening that I even got a few #postbath photos, which are always good for the heart no matter the age of the kiddo! Check my stories for more Jack Jack tube changing stuff + my secret #granulationtissue weapon (that I found online so it’s prob not super secret, but I was nervous to try it the first time so I want to share). Let me know if you have any questions—> I am an open book! ♥️♥️ So glad I found @mossandmarsh.co #bigkidtowels because they’re actually large enough to fit & dry my XL toddler. ✔️ #iloveatubie #newtubewhodis #feedingtubeawareness #aldh7a1 #jackjacklove #metabolicdisorder #inbornerrorofmetabolism . . #tripletherapyforpde #rarewarrior #raredisease #rarediseasewarrior #rarediseaseadvocate #advocatelikeamother #geneticdisorder #epilepsywarrior #genetictestingsaveslives #adore_able #wereallable #tubielife #tubiemom #tubiewarrior #mossandmarsh #shopsmalllove #addpdetonewbornscreening #parenthood_moments #epilepsydoesnthavejack