Guide for Traveling with a Medically-complex Child

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forTravelingwitha Medically-complexChild Created in association with Brade's Place
GUIDE

AboutThisMagazine

Travelingwithachildwithmedicalcomplexitycanbechallengingbut withextraplanning,afamilyvacationcanbeamemorableandenjoyable experience.Planningavacation(andexperiencingone)canstrengthen familyrelationships.

ThismagazinewascreatedfromtheTravelGuidemadeincooperation betweenBrades'PlaceandCourageousParentsNetwork(moreon theseorganizationsonpage16).Itofferspracticaladviceonchoosinga location,whatandhowtopackthemedicalsuppliesyourchildneeds, tipsfortravelingbycarandairplane,andwhatprecautionstotake shouldyourchildhaveamedicalemergencywhileonvacation.

TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES
TravelingwithPediatricMedicalComplexities...................................1 MedicalNeedsWhenTraveling..............................................................2 AirplaneTravel........................................................................................3 PackingandTSA..................................................................................4 In-flightTips........................................................................................5 CarTravel................................................................................................6 VehicleTips.........................................................................................7 Comfort...............................................................................................8 Packing101.............................................................................................9 PackingTips.......................................................................................10 Lodging...................................................................................................11 LodgingTips......................................................................................12 Staycation..............................................................................................13 StaycationTips..................................................................................14 HelpfulResources..................................................................................15 AboutCPNandBrades'Place...............................................................16 TableofContents TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES

TravelingWithPediatric MedicalComplexities

Vacationingimprovesyourmood,reducesstress,eventemporarilyboostsproductivity. Peoplewhotravelaremoresatisfiedwiththeirphysicalhealthandwell-being.

Vacationingevenincreasescreativity.Dothesebenefitsapplytothosewholivewith seriouspediatricillness?Ofcourse!

Travelingcultivatesgrowthasafamily,makesfamiliesmoreadaptable,andcreates opportunitiestoleanoneachother.Istravelingquitealotofworkforyouandyour child?Absolutely!Wanttotackleitinbitesizepiecesandstartlocal?Awesome,trya staycation.

Readyforthetripdreamsaremadeof?Startnow.Enjoythesetips,leaveplentyoftime toprepare,andhaveanamazingtime.

Togetstarted:

Exploreexpectations.Decidewhatismostimportanttoyouwithtravelingand figureoutwhatyouhopeforwiththistrip

Choseyourmodeoftravelandtripdetails.Toolslikeaprosandconslistwillhelp sortthroughimportantquestionslikewhereyouwanttogoandhowyouwanttoget there.

Preparation.70%ofstressrelatedtoawell-plannedtripoccursinthepreparation phase.Thefollowingpageswillhelpguideyouthroughthepreparation.

Medicalneeds.Medicalproblemsmayarisewhileonvacation,justliketheydoat home,andwithsolidpreparationyoucanmanagethemjustlikeyoudoathome. Packing.Havingtherightitemsandknowingwheretofindthemkeepsthefocuson thefun,thepeople,andthewonderfulmemoriesyou'remakingonthistrip.

Lodging.Whereyoustaywillbecomeyourhomeawayfromhome;choose somewherethatisasaccessibleandaccommodatingaspossible Flexibility.Whiletraveling,beingflexibleiscritical.

TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES 1

MedicalNeedsWhenTraveling

MedicalInformation

Inputandordersfromproviders.Gatheringinputaboutyourtravelplansfromeach activememberofyourchild’smedicalteamisimportant.Tellthemyourplans(timing, location,activitydetails),askanyquestions,andaskfortheirinput Havethem

formalizeandsignanyneededorders,routineandPRNprescriptions,lettersof medicalnecessity,andequipmentneeds.

Anticipatemedicalchallenges.Anticipatewhatsymptomsandproblemsmight worsenduringthetrip,suchasdystoniaworseningwitharoadtripbecauseof increasedtimewithoutpositionchanges.Next,withyourmedicalteam’sinput,create aplantorespondtotheworseningofsymptoms.

OtherTips

Organizemedicalinformation.Whetherasahardcopyordigital,compiledetailed medicalinformationincludingincaseofemergencyinformation,diagnoses, medications,allergies,insurance,currentorders,nutrition,communication,medical teamcontacts,pastsurgeries,hospitalizations,andPOLST/MOLSTforms. Keepingpapersandinformationhandy.Keepyourchild’smedicalinformationeasily availablebyputtingitonyourphone,emailingittoyourself,orstoringitinagoogle drivefolder.Printoutahardcopyandkeepitinyour‘gobag’orfirstaidkit. Besuretohaveseveraldaysextraofmedications,supplies,andtreatments.

Uponarrival,identifythelocationofmedicalfacilitiesifyouhavescheduled treatmentsormedicalcareplannedandcheckwithhost/hotelstaffabouttheclosest children’shospital,urgentcare,etc.incaseitisneeded.

Carefullyconsiderhowyourchild’suniquebodywilltoleratevariousactivities. Lookintowheretoattendtocareinpublic.

Preparationiskeytosuccessfultravelforchildrenwithmedicallycomplexdiagnoses,and somethingthatcanbedonewellinadvance.
TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES 2
Travelcanbesafeandfunformostchildrenwith seriousillness.Preparation,realisticexpectations,and inputfrommedicalteammemberscanhelpyourtrip besuccessful.

AirplaneTravel

Airtravelcangetyoutoyourdestinationwithjusta fewhoursin-flight.Withplanning,extratime,and assistancefromTSAandairlinestaffyourfamilycanfly rightthroughtheairtravelexperiencewithyour medicallycomplexchild.

BookingYourFlight

Airlinesaredifferent.Eachairlinehasspecificpoliciesforequipmentand accommodations,presentedintheir‘accessibletravel’policies.Thesepoliciesanswer questionsaboutin-flightoxygenuse,administeringcertainmedicationsduringflight (infusions,enteralfeedings),batteryrequirementsforpowereddevices,andtheuseof safety/mobilityequipmentlikewheelchairsandcarseats Choosetheairlinethat workswithyourchild’sneeds.

Booktheflightbyphone.Lettheairlineexpertshelpyoubycallingthemdirectlyto bookyourtickets.Theycananswerallofyourspecificquestionsaboutflyingwithyour childsuchasifyoursafetyseatwillfitthatplane,arrangingforanairportescort,etc. Theywillalsoensurethatyoucompletetheairline'srequirements,suchasalerting them48hoursinadvancewhenflyingwithoxygenormedicaldevices.

Planesareunique.Olderplanesmayhavenarrowaislesthatprohibitmanual wheelchairuse,orsmallbathroomsthatmakeitverydifficulttochangeanolderchild. Identifytheamenitiesthattheplaneoffers,suchasin-flightpowerforequipmentor seatdimensionsforseatingrequirements.

Timingiseverything.Prioritizeflighttimesthatwillworkwithyourchild’sschedule andneeds.Considerwhattimeofdaywilltheybesthandletheairportchaos,tolerate posturalflightdemands,needacomplexdruginfusion,etc.Wouldyourchildbenefit fromalayoverbreakordobetterwithanonstopflight?

Considerchangeableflightsoradd-onflightinsurance.Giveyourselfpeaceofmind bypayingforflightinsurancesothatunforeseenchangesarehandledwithout additionalexpenses.

Managingasuccessfulflightbeginsbeforeyouevenbuythetickets.Thereareafewthings toconsiderwhenbookingtheflight:
TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES 3

Packing

Whilecheckingallofyourluggagecanmakeiteasierintheairport,itisessentialthatyou carryoneverythingyoumightneedinthenext24hoursincaseofunplannedtravel emergencies.Allmobilityaids,medicaldevices,andmedications(intheiroriginalbottles) shouldbecarriedonanddonotcounttowardsyourcarry-onlimits.Ifspaceontheplane islimited,youmaybeaskedtogate-checksomeoftheseitems.That’sallright,they’llbe returnedoncetheplanelands.

Asageneralrule,rememberthatifyouwon’tsurvive24hourswithoutit,itdoesn’t belonginyourcheckedbaggage.Keepessentialsuppliesforfeeding,toileting, hygiene,andextraclothinginyourcarry-on.

PackyourcarryonwiththeTSAsecurityscreeninginmind!Packmedicationsina largeziplockbagsotheycanbeeasilyexaminedwithoutbecomingdisorganized.Ifyou haveliquidmedicationsoratube-fedchild,simplymaketheagentaware,andtheywill excludeitfromtheliquidquantityrule.

TSACheckpoint/Security

TSAagentsaretrainedtoaccommodateyourmedically-complexchildandmakesecurity screeningaseasyaspossible.Theycanpersonallyescortyourfamilythrough thesecurityscreeningprocessfromstarttofinishifyouprovidethemwitha72-hour notice.Youcanalsocallthe‘TSACaresLine’ withspecificquestionsandarrangeforyour escortthroughsecurity.Ifyouhavemedicalequipmentormedicationsthatshouldnotbe X-rayed,simplyalerttheTSAagentandtheywilluseanalternatescreeningmethod

Forchildrenwithautismfamiliarizationwiththesecuritycheckpointaheadoftimecan bereallyhelpfulonthedayoftravel.LearnmoreaboutthisthroughtheWingsforAll program.

TSANotificationCard

PrintandcompletetheTSAnotificationcard.Showingthistothecheck-inagentwillhelp ensurethatyoursecurityscreeninggoessmoothly.

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In-flightTips

Oxygen

Airlinesdon’tallowoxygentanks,butFAAapprovedportableoxygenconcentratorsare permittedandcanbeaniceoptionfortheentiretrip.Contactyouroxygensupplierand seehowtonavigatethis,theymayloanyouonetouseforthetrip Iftheywillnot,there arerentalcompaniesthatyoucancontact.

OtherDevices

VerifythatyourdevicesareFAAapproved(particularlytheirbatteries).Eventhoughthe planemayhaveoutletsforuseduringflights,mostairlinesrequireyouhaveenough batterylifefor150%ofyourin-flighttime.YourDMEprovidercanhelpyougetmore batteriesjustforthetripandansweranyFAAquestionsyouhaveaboutthedevices.

Bathroom

Weallhopenottohavetochangealargerchild’sbriefwhileontheplane,butifyoudo, asktheflightattendanthowtobestnavigatethis Thebackoftheplanemightofferthe mostprivacy,chuxoratravelblanketcanprotectyourchildfromthefloorandplacing trashinaziplockbagwillminimizeresidualodors.

5 TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES

CarTravel

Roadtripsofferanadaptablefamilytravelexperiencewhichis appealingwhentravelingwithachildwithmedicalcomplexities. Flexibleschedule,plentifulpackingspace,comfortableseating,and

theabilitytoaccommodatenecessaryadjustmentsastheyariseare justafewoftheperksthatcartravelcanbringtoyourfamily’strip.

PlanningAhead

Centeringyourplanningonyourchild’sneeds,tolerances,andlimitsiskeytosuccessful travel

Howmuchtimecantheyspendinthecarbeforetheyneedabreak?Changing positions,deliveringscheduledmedications,andbathroomneedsareallexamplesof reasonstoscheduleplannedbreaks.Mapoutyourrouteaheadoftime,andkeeprest stopsandothercareneedsinmind.

Whatislikelytogowrongwhiledriving,andwhatwillIdoifitdoes?Hopeforthe bestbutplanfortheworst.Thinkingthroughwhatmightgowrongisanimportant stepinplanningahead.Knowingthatyouhaveaplanwillputyourmindatease. Consideryourchild’ssymptoms,andwhatyouwilldoiftheyneedanintervention whileontheroad;forexample,ifyourchildispronetopullingontheirG-tube,plan forwhatyouwilldoiftheypullitoutwhileyouaredriving.Contingencyplanningcan giveyouconfidencethatyouarereadytohandlewhatcomesyourway.

TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES 6

VehicleTips

OrganizingtheVehicle

Keeptheitemsyouwillneedtoaccessfrequently(medications,feeding,hygiene, suction)inaspecific,easy-to-reachlocationandcommittoreturningthemtherewhen notinuse.Smallbinsundervanseatsanddoororganizersonthebackofbucketseatsare greatstorageplaces.Considerarrangingbinsorbagsbytask,oneforrespiratorycare, feeding/G-tubecare,hygiene,distractingactivities,etc.Userearortrunkstorageforitems youwon’tneedwhiledriving.

KeepinganEyeonThings

Rear-viewmirrorextensionsgiveyouasafeviewtothebackseats,helpingyoukeepone eyeontheroadandtheotheronwhat’shappeninginthecar.

HavingtheNecessities

Addyourownessentialitemstopackagesofwipes,smalltrashbags,varioussizeziplock bags,plasticcups,scissors,andchargingcords.Whenyouneedthemyouwillbehappy thatyouhavethem.

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Comfort

PositioningintheCar

Withmobilityormuscletoneconcerns,addasecondcarseatsafetysystemtoyour everydaycarseatsystem.Alternatingbetweenthemincreasescomfortandcartime tolerance.Ifsafeforyourchild,usinganapprovedEZ-onvestsystemwithabodypillow forpositioningsupportcansignificantlyimprovecomfortinthecar.

SeatBeltSecurity

Seatbeltbucklecoversareagreattooltobesureseatbeltsdon’tcomeoffwhenthey shouldbeon

Activities

Oldphonesortabletsaregreaton-the-roaddeviceswhenpre-loadedwithgamesand videos(Disney+,Netflix).Downloadcontentaheadoftimeviawifisoyourchildwillhave fullaccessevenwithoutanactivephoneordataplan.Don’tforgettheheadphones.

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Packing101

Packingwellisessentialtoagreattrip.Havingtherightitems(and knowingwheretofindthem)helpskeepthefocusonthefun,the people,andtheamazingmemoriesyou’remaking.

HowtoMakeYourList

Nodoubtyourmedically-complexchildhasmorestuffthanallfamily membersputtogether!Pre-madepackinglistscanhelpmakeyourown uniquelist.Tomakeyourlistthinkthroughyourchild’sroutinesduringa typicaldayandwritedowneachandallofthesuppliesyouuse.Thendothe samebybodysystem(GI,respiratory),andagainbytasks(feeding,suctioning, bathing),addingnewitemstoyourlisteachtime.Checkyourlistagainstyour monthlysupplyorderreceiptandavisualinspectionofyoursuppliesathome.

Organization

Howyouorganizeisveryindividual.Isitbettertohaveeachfamilymember managetheirownitemsandsuitcase,ordoyouhaveeveryone’shygiene itemsinonepackedbag,allthePJsinanother,orabitofboth?Packingcubes orlarge,clearziplockbags(2.5gallorevenbigger)helpkeepthingstogether andeasilyfound.Considerbagsthatexpandforextraspaceasyoubuythings onyourtrip.Ifyouaretakingaflight,keepaneyeontheweightofeachbag andredistributeasnecessary

GoBag

Putessentialitemsforyourchild’scarefor12hoursinaneasilycarriedbag thatstayshandythroughoutyourwholetrip.Expanditforthistriptoinclude aspareortwoofeachtube(G-tube,trach,ostomywafers),yourICEform,a comfortitem,andahigherquantityoftheotheressentialmaterials.Keepthis baghandyatalltimes;itcanbealifesaver.

StressManagement

Thoughtscanraceaboutifyou’verememberedeverything,haveenough,how you’llfititall,howyou’llfindanything,etc.Haveconfidenceinthe comprehensivelistyoumadeandleaveplentyoftimetopack.Ifpackingis stressfulputonsomemusic,startearly,minimizedistractions,maybeeven packsupplieswayaheadoftimetobreakitup.

9 TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES

PackingTips

ItemstoKeepHandy

Handicapplacard,batterypackforphone&tabletcharging,scissors,sharpie,chuxpads (theygiveyouacleansurfaceandcleanupmesses),andwipes.

ItemswithPurpose

Bringanitemthatcomfortsyourchildduringdistressingortiredtimesandbringa favoriteitemthatwillhelpwhenhavingtowait.

MiscellaneousThingsNottoForget

Cordsforphonesandequipment(feedingpump),powerstrips,extensioncords,laundry bags,lotsofziplockbagsfororganizationandwetorsoiledtrash,laundrypods,and insurancecards.

PersonalItems

Headphonescanprovideentertainment,solitude,andcontroloverenvironmentalnoise; considerapairforeachfamilymember.Considergivingeachfamilymembertheirown backpacktocarrywater,snacks,andentertainmentdevices.

BoredomBusters

Oldphonesortabletscanbepreloadedwithmovies,games,andpicturesforfunand don’tneedaphoneplanordatatoaccessdownloadeditems(Netflix,Disney+).Consider otherportableactivitiessuchassnacks,readingbooks,etc.

FirstNightTips

Makethefirstnighteasierbypackingeverythingyouallneedforthatfirstnightinone suitcasetoprioritizegettingagoodnight’ssleep!

DocumentsandPapers

Updateyourincaseofemergency(ICE)andyourmedicalinformationanddigitizethis informationsoyoualwayshaveaccessviayourphone Emailittoyourself,makeagoogle drive,oruseanapplikeLightningBug,butbesureyoualsoprintitoutandkeepacopyin yourgo-bag/firstaidkit.

ConsiderShippingItemsAhead

Considershippingitemsaheadtolodginglocationssuchasbriefs,wipes,andenteral feedingsupplies.Ontheboxincludeasupervisor’snameaswellas‘guestsupplies’for arrivalon(date)forthe(name)family.

10 TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES

Lodging

Yourlodgingisyourhomeawayfromhome.Ahotel,cruiseship, vacationrental,orstayingwithfamilyorfriendscaneachworkwell.

Knowinghowthelocationmeetsyouruniqueneedshelpsprepare youforpotentialchallenges.

Location

Prosandcons.Consideryourchild’suniqueneedswhenplanningwhatlodgingworks bestforyou.Forchildrenwithalotofequipment,wherepackingandunpackingoften wouldbechallenging,considercentrallodging.Forchildrenwithdifficultytravelingin thecar,considerlodgingclosertoyouractivities.Also,thinkthroughyourhome routineandconsiderhowyourroutineswillchangebasedonaccommodation changes.

Accessibility.Beingabletoutilizethewholelodgingfacilityisimportantandadirect callistheeasiestwaytogetthemostaccurateinformationonaccessibility.Explain yoursituationandaskforspecificdetailsaboutroomaccessibility,ifthereare elevatorsnearby,ifthereisafridgeintheroom(medication,food),ifthebathrooms andshowersarewheelchairfriendly,iftherearerampstoaccessthepoolanddining areas,etc.

Stayingwithfamily.Stayingwithfamilycanstrengthenlifelongrelationshipsand makemeaningfulmemorieswithpeopleyoulove.Opencommunicationiskeytobeing agoodhouseguest;taketheleadinaconversationaboutyourchild’sneeds,and listentoyourhost’squestionsandconcerns.

Shippingahead.Sometimesshippingsuppliesaheadsavespreciousspaceand simplifiesthedayoftravel.Callaheadtodiscussthiswithyourhotel,identifya manager’snametoputonthepackage,andconfirmtheaddress.Shipwithatracking codeandonceitarrivescallthehotelandconfirmwherethepackagewillbestoredso thatyoucaneasilyfinditwhenyouarrive

TRAVELING WITH PEDIATRIC MEDICAL COMPLEXITIES 11

LodgingTips

WhattoBring

Packextensioncords,powerstrips,personal andmedicaldevicepowercords,andyour child’sfavoriteitemsforcomfortandfun. Bringanythingthathelpsyourchildfeelat home.

BeforeyouArrive

Callaheadonthedayofyourarrivaltoshare yourexcitementtostayattheirfacilityandlet themknowofyouruniqueneeds (accessibility,fridge,pre-shippedsupplies, etc.)sothattheyhavetimetoresolveany challengesbeforeyouarrive.Explainyour medicalneedsandaskthemtochangeallthe bedding,includingthemattresscoverand bedspread.Askingforextratowels,pillows, andblanketsmightbehelpfulforpositioning, changingstation,etc.

SettingUp/MovingIn

Takingtimetounpackandsetthingsupwill helpyouknowwheretofindsupplies,identify anymissingitems,andhelpfamilymembers feelathome.

BedAccommodations

Portablesafetybedrailscanbetemporarily addedtoabedtoprovideforsafety Safety sleeptentsareperfecttoreplaceyour pediatricsafetysleeperathome.Usewedge pillowstohelpwithpositionalneedsfor reflux,aspiration,orrespiration.

HotelScript

Whencallingthehotelaheadoftime introduceyourself,yourchild,andtheir needs;andexplainthatyouarelookingfor informationaboutanupcomingstay.

Askaboutfacilityaccommodationsbasedon yourneeds,suchaswheelchairaccessibilityto rooms,showers,andthepool.Askifthereis anin-roomfridgeformedications,anonsite restaurant,ifanypartsofthehotelarenot accessible,etc.

Askaboutlocalmedicalservices,suchas pharmacies,children’shospitals,and emergencymedicalservices.Thisisespecially importantifthelocationisrural,orataresort thatisremovedfromcityinfrastructure(such asamountainorbeachresort).

Ifyouwouldliketoshipsomesuppliesahead, letthemknowandexplainwhyitwouldbe helpful.Confirmtheshippingaddress,and obtainaspecificmanager’snametoinclude ontheoutsideofyourpackage.

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Staycation

Staycationscanprovidemanyofthebenefitsofdistancetravelandmightbe exactlywhatyourfamilyorchildneeds.

Stayinglocaldoesn’thavetomeanstayingathome.Checkingintoalocal hotelorrentinganAirBnBcanhelpcreatethatvacationambiancewithout thehassleandexpenseoftravelingfarfromhome.Forparentswhofeel uncertainaboutvacationingfarfromhomewiththeirmedicallycomplex child,staycationsofferalessstressfulexperiencethatletsyoupushyour boundarieswithoutoverextendingyourself.

PlanningaStaycation

Reflect,identifyneeds,setexpectations

Identifyingyourhopesandexpectationsforthestaycationisthefirststep. Askyourselfwhatwillmakethisexperienceasuccessforyouandyour family?Areyouhopingtorestandrelax,tocreateexcitingnewmemories,or tofeelcloserasafamily?Knowingwhatismostimportanttoyouwillhelp youplanforsuccess,andhelpyourecoverwhenthingsseemtobegoing poorly.Takeamomenttoreflectonthesetopics:

Vacationingismeaningfultomebecause .

Vacationingworriesmebecause .

Forme/mychild/myfamilytravelingwouldhelpus .

Thisstaycationwillbeasuccessifitmakesmefeel .

Ifeelcomfortabletraveling (miles/hours/minutes)from (home/mymedicalteam/ahospital).

Activities

Nowthatyouunderstandwhat’simportanttoyou,choosestaycation activitiesthatalignwithyourgoals.

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StaycationTips

Bringtheexotichomebyhavingethnicallythemedactivitiesandmealseach day(themeslikeHawaiiday,Italyday,Mexicoday,etc.).Enjoytravelvideos anddocumentariesfromotherlands;evenexploringonGoogleEarth togethercanbefun!

Makenewroutinesatthehouse.Sleepin,stayuplate,switchupmealtime, andmakeitfeellikeyou’reonvacation.

Setgroundrules.Exploreyourpriorities(spendtimetogether,makenew memories,relax,etc.)andsetrulestohelpthosehappen.

Putyourselfin“VacationMode”.Takevacationdaysfromwork,answeryour phoneselectively,tryandminimizehousekeeping,andgenerallyactasifyou wereoutoftown.

It’sOKtodoactivitieswithonlysomefamilymembers.Beupfrontaboutit andtakealotofpicturesandvideostosharewhenyougethome.Youcan even“bringalong”thosestillathomewithavideocall.

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HelpfulResources

Thefollowingarehelpfullinksandresourcestohelpmakethe mostofyourtrip..

MedicalForms

AnticipatorySymptomManagementForm

LightningBugApp

CPNInCaseofEmergencyForm

ACEPEmergencyInformationFormforChildrenWithSpecialHealthCareNeeds

Luggage/CarseatInCaseOfEmergencyTags

FlightResources

AirlineAccessibilityPolicyDeltaExample

TravelOptions

TSAResources

TSACares:(855)787-2227

ParkandMuseumResources

NationalParkPassAccessPassisfree($10processing)toUScitizenswithdisabilities, andadmits1vehicleincludingupto4adultsandchildrenunder16toallnationalparks.

Playwithmeorinclusiveparks&playgroundsnationwidedirectory.

Museumsforall-providesdiscountsorfreepassestomanynationwidemuseums.

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CPNisanonprofitorganizationthatprovidescurateddigitalresourcesandprogramming tohelpcaregiversadvocateforchildrenlivingwithseriousillnessandnavigatetheillness journey AtthecenterofCPNareparentandclinicianvoicesthatilluminatethelived familyexperienceandfocusonpsycho-socialandemotionalneeds,regardlessof diagnosisandwithoutbias.

CPNresourcesincludevideos,podcasts,newsletters,ablog,socialmediaposts, educationalguidesandlearningpathwayswrittenforfamilies,andaclinicianportal offeringmaterialsforuseinself-andcolleagueeducation.Programsincludevirtual events,andvirtualandin-personpresentationstoclinicianaudiences,industryand patientorganizations.CPNalsopartnerswithotherstobringthefamilyperspectiveto clinicalresearchandawiderangeofcommunication(ormedia)outlets.

AboutBrades'Place

Brades’Placeisformedinthehonorandbenefitofallchildrenwithcomplexmedical challengesandtheirfamilies.Theorganizationprovidetheneededholisticand comprehensiveservicesandsupporttoallowthewholechild(physical,emotional,and spiritual)andtheirfamilytolivewell.

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