homenews - almost home kids...for many families, who care for a child with medical complexities,...

almosthomekids.org Spring/Summer20171

HomeNewsSpring/Summer 2017

For many families, who care for a child with medical complexities, living in central Illinois makes it geographically challenging to access our services – but plans to build a third location in Peoria will drastically change that for the better. Gabe and Garett have stayed at our Naperville home for respite and live in the Peoria area. Their mom, Suzanne Ruskusky, tells us in her own words what the new Almost Home Kids will mean to her and her husband Jeff and families like theirs in Central Illinois.

“Bothourboysareaffectedbyageneticdisorderthatleavesthemwithouttheabilitytotalkorwalk.TheyhavealwaysreceivedexceptionalcareatOSFHealthCareChildren’sHospitalofIllinois,buttheneedsofchildrenwithcomplexmedicalconditionsandtheirfamiliesdon’tjustendwhentheyleavethehospital.Whenyouaretheparentofachildwithcomplicatedhealthneeds,lifeisdifferent,buttheloveandhappinessisthesame.Thedailytasks,thedependency,andthemedicalcompetencyarechallenging.Ifeelsofortunatethatweliveinacommunitywithachildren’shospitalthatisdedicatedtocontinuingourcare.OSFHealthCareChildren’sHospitalofIllinois’plantobuildanAHKhomerighthereinPeoriawillchangelives.Itisabridgefromthehospitaltothehome.

The Ruskusky Family Gabe Ruskusky

The Ruskusky Family

Thegoalistogivefamilieslikeminethetime,tools,andtrainingnecessarytomakethetransitionfromhospitaltohomesuccessful.Fortoomanyyears,familieslikeourshavestruggledandnotknownwheretoturn.Thiswillnotbeanotherhospital.AlmostHomeKidsisdifferent.Itisspecial.Thisfacilitywillbearealhouse,withrealhomedécorhangingonthewalls,afull-sizekitchen,andevenawheelchairaccessiblegardenandplayground.Insteadofscrubsandhospitalgowns,everyonewilldressintheirownclothes.Thesemightsoundlikesmallthingstoyou,buttoafamilythathasspentthreemonthsintheICUorwhoisleavingtheirchildforthefirsttimemaybeever,theymeantheworld.HavinganAlmostHomeKidsrighthereincentralIllinoiswillprovidethislevelofcare.Familieswillhaveachoiceandfeeltheyaren’talone.BringingAlmostHomeKidstoPeoriawillchangecountlesslives,oursincluded.”

“Until I experienced Almost Home Kids for the first time, I didn’t realize how wonderful it would be to have one in Peoria,” Suzanne says. “Once Almost Home Kids is here, it’s going to be a huge help for so many families.”

2

Our FamilyWatching Leiam Grow

“Evenwhenearlytestsinformyouthatyourbabywillbebornwithhealthchallenges,therealitycanbedevastating,”saysRegeneFranklin.RegeneandherhusbandLeondraewelcomedtheirsonLeiamintotheworldonJuly1,2016.TestsperformedearlyinRegene’ssecondtrimesterrevealedthatLeiamwouldsufferfromEmanuelSyndrome,ageneticdisorderthatcausesweakmuscletoneandfailuretothriveininfants,alongwithotherprofounddevelopmentalissuesthatcanfollowachildforlife.

“Itwasahigh-riskpregnancyfromthestart,”Regeneexplains.“Ihadlostachildbeforetoaseriousbirthdefect.Still,whenIheardthenews,Ibrokedown…itwasjustsodifficulttohear.”LeiamarrivedatNorthwesternMemorialHospitalweighingjust6pounds7ounces.“Iheldhimforonlyafewseconds,thenhewasimmediatelyputonoxygenandmovedtotheNICU,”Regene

remembers.“Hecouldnotbreatheonhisownandbecausehehasacleftpalate,hecouldnotfeednormally.”Aweeklater,LeiamwastransferredtoAnn&RobertH.LurieChildren’sHospitalofChicago,whereheremainedfor7months.ThisishowRegeneandLeondraelearnedofAlmostHomeKids,wheretheywouldbetrainedontheequipmentandskillsthey’llneedtocareforLeiamintheirChicagohome.

“AtAlmostHomeKidswe’relearninghowtosuctionhimproperly,keephistrachealtubecleanandmanagethegastrostomytubethatfeedshim,”saysRegene.There’salsothehumidifierthatkeepsLeiam’senvironmenthealthyandthepulsemonitorthat

“We feel fortunate to have the Almost Home Kids staff helping us move for-ward,” Regene says. “When we bring Leiam home, that’s the day I will feel my family is complete.”

deliverswarningstheparentsmustmonitor.Regene’ssister,Latoya,haslearnedmanyproceduressoshecanhelpout.Somedaysfeellike“arollercoaster,”Regenesays,“butwearemakingprogress.TheAlmostHomeKidsstaffissosupportive,explainingeverythingclearlyandalwaysofferingahand.”

Leiam with volunteer Ellen

Leiam with parents Regene and Leondrae

BecauseLeondraeworksfull-time,it’stakinghimlongertocompletehistraining,butbothparentsarehopefultheycanbringLeiamhomesoon.Hissister,3-year-oldLeknaiyah,looksforwardtohavingherbabybrothernearby.Regene’smotherKimberlyisreadytohelpwithextracareforLeknaiyahasLeiammakesthetransition.Thisisafamilyaffair.Today,Leiamweighsnearly12poundsandisgainingstrengtheachday.Hewillundergocleftpalatesurgeryafterreaching11monthsofage.Theirsafeandsuccessfultransitionhomeiscomingsoon,andafteralongadifficultroadtheFranklinfamilyarelookingforwardtothisnextandimportantstepinkeepingtheirfamilywholeandtogether.


Volunteers: In Our Own Words

Kate Cheromcha, ChicagoHow and when did you come to be involved with Almost Home Kids?EvenbeforemyhusbandandImovedtoChicagoinSeptember2015,IhadbeenhearingaboutAHKfrommydearfriend,AnnKarch,MDwhoisoneoftheMedicalDirectorsatAHK.Onceweweresettledintoournewhomeandcity,Iwantedtofindavolunteeropportunity-Ididn’thavetolookveryfar-AHKseemedlikeaperfectfit.Tell us about your first day as a volunteer.Asinstructedinourorientation,IarrivedatAHK,signedin,stashedmycoatandpurse,sanitizedmyhands(veryimportant!)andpresentedmyselftothenurseatthenursingstation.Rightaway,shegreetedmeandaskedmeifIwouldliketoholdababy.YES!Ofcourse!andshebroughtmetoMackenzie’sroom-anincrediblycutelittlebabygirl.HernurseexplainedtomethatalthoughMackenziewasn’tabletorespondwithsmiles,shelovedtoplaywithtoysandtobeheld.Assoonasshewasinmyarms,itdidn’tmatterthatshewasconnectedtovariousmachines-herewasababywhosnuggledinanddidn’tcareifIcan’tsing;shehappilyreachedfortoys,lookedatboardbooks,etc.Thetimepassedsoquickly-Icouldn’tbelieveit!What is the most enjoyable and rewarding aspect of your work at AHK? Well,interactingwiththebabiesandkidsiswonderful-whetheryou’replayingpeek-a-boowithababyorhelpingachildcreateapictureorwhatevertheywanttodo.Butthestaffissogreat-theyalwaysletyouknowhowmuchyou’reappreciatedandhowimportanttheseinteractionsarefortheirlittlepatients.SoIwouldsaythatthemostrewardingaspectisthatyoureallyfeelasifyouarepartoftheteamcaringforthesechildren.Does your volunteer role give you the chance to use talents that you love sharing? Or to build new skills you’re glad to have?WellIalwaystellthenursesandaidesthatIhaveanicesoftlap!Ilovereadingtothekids,coloringwiththem,playingwiththem-whatevertheywanttodo.Andtheyhavenoproblemlettingyouknowwhattheywanttodo!

Rita Nathanson, Naperville

How and when did you come to be involved with Almost Home Kids? Dr.MichaelHoffmanistheMedicalDirectorofthePhilippineMissionI’vebeenpartofforthepasttenyears.HeisalsoMedicalDirectoratAHK.About2yearsago,heaskedifIwouldconsidervolunteeringatAHK.IvisitedAHKandimmediatelylikedtheatmosphereandpeoplesoIattendedthevolunteertraining.Tell us about your first day as a volunteer as our Art Therapist. What is the most enjoyable and rewarding aspect of your work at AHK?IworkedwithKristinHickman,theChildLifeSpecialistatthetime.IfollowedherleadandworkedwithJésusforseveralvisits.Jésuslovedartandpartneringwithme.Hehaduseofhisarmsandwascognitivelyageappropriate.Ihavesincebeenchallengedtoworkwithchildrenwhoarenotabletomakeartduetophysicalandcognitivelimitations.I’ve“stretched”myselftofindwaystostimulateandengagethesechildren.ThathasbeenthemostrewardingaspectofmyworkatAHK!SimplybeingpartofthemilieuatAHKissoenjoyable.ThestaffshowsappreciationforwhatIdowiththechildrenandI’velearnedtoleteachchildleadmeinwhatwillengageandstimulatethem.Does your volunteer role give you the chance to use talents that you love sharing?Or to build new skills you’re glad to have?IusemyArtTherapyskillsinverydifferentwaysfromwhatI’dbeenusedtoandso,Ihavedevelopednewskills.Would you recommend AHK to friends as a good place to volunteer?Absolutely.ThechildrenatAHKarespecialandIbelieveworkingwiththesechildrenteachesusto‘bewith’theminadifferentwaybecauseoftheirmedicalandindividualneeds.IlovecomingtoAHKeachweektodoartwiththesechildren.

Volunteer Kate with Darone Volunteer Rita with Christopher

4

Our Community

WhentheAlmostHomeKidsBoardrevisedourmission,theyalsorewroteourvisionstatement:The Almost Home Kids model is present in any place there is a need without regard to geographical boundaries.Atthistime,withonlyonelocation,wewerewellawareoftheneedtoopenanotherhomethankstoalongwaitinglistinNapervilleandacarefullywrittenWhitePapershowingtherewasagreatneedinChicago.In2012wetookthefirststepwhenweopenedoursecondhomeinChicago,justafewblocksfromLurieChildren’sandother

world-renownedhospitals.WearenowonthebrinkofournextsteptowardsathirdhomebecomingarealitywhenAlmostHomeKidsatOSFHealthCareChildren’sHospitalinIllinoisopensin2018inPeoria!WewillbeclosertoasignificantpopulationofchildrenwithmedicalcomplexitiesthatwillbenefitfromhavingAlmostHomeKidsinCentralIllinois,andwecouldn’tbehappier.OSFHealthCareChildren’sHospitalofIllinoishassignedanaffiliationagreementwithAHKtoestablishanewAHKHomeandtransitionalcareprograminPeoria.Currently,childrenandtheirfamiliesmusttraveltoeitherNapervilleorChicago,alengthydriveforfamiliesinthecentralandsouthernsectionsofthestate.ThisdifficultywillbealleviatedwhenweopeninPeoria.

“Thisaffiliationisanimportantsteptowardsourgoalofprovidingallchildrentherightcareintherightplaceattherighttime,”saidKellyNierstedt,President,OSFHealthCareChildren’sHospitalofIllinois.“WehavereferredchildrentoAHKforyears,butthedistancefamilieshavetotraveltotakeadvantageoftheChicagolandfacilitiescombinedwithanincreasingpopulationofsuchchildrenillustratestheneedforanAlmostHomeKidsinPeoria.Thenumberofchildrenwithmedicalcomplexitiesisgrowingat6%annuallyandaccountsfor40%ofMedicaidspendingonchildren.It’ssimplytherightthingtodoforthesechildrenandtheirfamilies.”

OSFHealthCareChildren’sHospitalofIllinois,locatedinPeoria,isthethirdlargestpediatrichospitalinIllinoisandtheonlyfullservicetertiaryhospitalforchildrendownstatewith136bedsandmorethan115pediatricsubspecialists.FormallyestablishedasapediatrichospitalwithinthewallsofOSFSaintFrancisMedicalCenterin1990,Children’sHospitalhasover7,000admissions,2,500newborndeliveries,and18,000emergencydepartmentvisitseachyear.Moreatwww.childrenshospitalofillinois.org

FormoreinformationaboutAHKatOSFHealthCareChildren’sHospitalofIllinoispleasecontact:[email protected].

Peoria Expansion

Uriah with his family celebrating his 11th birthday. The new Almost Home Kids will be closer to home for Uriah and his family.

Uriah with RN Nikko

Peoria facility rendering


Creative Way to Give: Donor Advised Funds

TherearemanywaysyoucanhelpAlmostHomeKids.Youcanprovidegoods,donateyourtimeorgivemoney.Alesserknown,butverypowerfulwaytodonatetoyourfavoritecharityisthroughadonoradvisedfund(DAF).ADAFisacharitabledonationvehiclewhichallowsyoutomakeacontributionofcashorappreciatedsecurities(generallystock)totheFundandthenadviseittomakegrantstoyourdesignatedcharity.

The benefits of using Donor Advised Funds include:• Immediate tax savings

• Tax free growth

• Capital gains avoidance

• Minimize IRS reporting requirement

If you are interested in setting up a DAF, there are many community foundations and financial services companies who operate them. One stipulation to keep in mind is that you cannot use DAFs to satisfy a pledge or to purchase a table at an event. For more information, please contact Raeann Jackson at [email protected] or 312-282-7081.

Cyrese & Pete Erickson with Mackenzie at AHK Chicago

Tevin with RN Beth

Mackenzie receiving Early Intervention services

“We found that creating a donor advised fund for our family was the perfect tool for providing support to the organizations we care about, like AHK. Our donor advised fund has helped us put together a giving strategy with minimal time and effort. It’s a great tool for anyone who is committed to making a difference in their community.” Cyrese & Pete Erickson

6

Boots & Bling — A Western Fling! Morethan300guestsheadedwest(toDownersGrove)forafabulousWestern-themedaffaironApril21,2017.This event was able to raise almost $150,000 for AHK Naperville!FromourlongtimefriendandhostPattiVasquez,tothepassionatestoriesfromhonoreesandMichelleandJonFreemanallinattendancewereinspiredtogivegenerously,havefunanddancethenightaway!

Thereissomethingforeveryoneinourupcomingeventslineup.TheSummer/Falleventline-upforAHKhassomeenticingchanges,time-testedfavoritesandjusttherightamountofintrigue!SavethedateforthefollowingeventsbenefittingAHK: June 15, 2017 – Summer Tasting Soirée at Kendall College PleasejoinTopChefcompetitorCarlosGaytanatourfirsteverAlmostHomeKidsSummerTastingSoirée–ATopStudentChefCulinaryCompetitionandgourmeteventatKendallCollegebenefitingtheprogramsandchildrenatAlmostHomeKids.SeniorStudentswillcreatehorsd’oeuvresinspiredbytheculturalbackgroundsofAHKfamilies,whileattendeeswillhavethechancetoselectthewinneroftheAHKTopStudentChefScholarship.Ticketsandsponsorshipsavailablenowatgive.almosthomekids.org/event.September 15, 2017-AHK Golf Marathon at Zigfield Troy in Woodridge Perfectforbeginners,seasonedgolfers,oranyonewillingplay100holesforagreatcause,ourannualGolfMarathonismovingtoSeptember!Individualgolferscommittoraising$1000fromfriendsandfamilyviaTeamRaiseronline,ourmobilefundraisingplatform.Barbecueandadultbeveragesincluded,andthere’snoregistrationfee!Newthisyear,we’realsoplanningalateafternoonJuniorGolferchallenge,whereyouthgolferssignuptoplay18holesandraise$250pergolferfromfriendsandfamily…theperfectopportunityforteensandtweenslookingtogivebackorfulfillcommunityservicerequirements!EmailElizaLarsenatelarsen@almosthomekids.orgifyou’reinterestedinlearningmore!September 24, 2017 - Rockin’ the Cause Aftertheirincrediblysuccessfulinauguralconcertlastyear,WoodridgeRotaryandRockin’theCausearehostinga2ndannualRockin’theCause,thistimealltheproceedswillbenefitAlmostHomeKids!Thewesternsuburbanlocationhasn’tbeensetyet,butsavethedateasthiseventpromisestorock!Thefollowingbandshavealreadysigned

up:PistolPete,TheChicagoExperience,TheCryan’Shames,ShanahansJamBand,BlackJackBlue,J&DJustFriends,HenryJBC,DJSynergyandTommyJallo.Updateswillbepostedatalmosthomekids.org/news.

October 27, 2017 – Share the Care Ball at The Drake Hotel OursixthannualSharetheCareBallwillusherinHalloweenweekendwithanelegantnoteofmystery….aMaskedBall!Dresstothenines(withorwithoutyourfeatheredmask)andjoinusforadivineeveningofdecadenceinsupportofthechildrenandfamiliesofAHKChicago.Savethedate!

Getting Involved with AHK

Team Almost Home Kids for the Shamrock ShuffleSkieswereclearandwewereexcitedtocheeronourlargestTeameverfortheBankofAmericaShamrockShuffle8KonApril2,2017.Nearly $5,000 was raisedfrom37participants,including25employeesfromGrantThornton,adedicatedcorporatepartnerofAlmostHomeKids!ThankstoallwhodonnedAHKorangetokickoffthisyear’srunningseason.

“No Place Like Home” at The Bassment AHKYoungAssociatesBoardmembersandfellowrevelersfollowedtheyellowbrickroadtoTheBassmentinRiverNorthforsomesupercoolfunatthethirdannual“NoPlaceLikeHome”eventonApril28,2017.Guestsenjoyedsignaturecocktailsandapps,livemusicfromOneMomentfromGloryandwidearrayofraffleprizes,raisingmorethan$21,000 for AHK Chicago.Cheers!

Past Events Upcoming Events


Children’s Supplies Wish List: (items must be new please)

• Baby wipes, unscented or for sensitive skin (we use about 1,000 boxes annually)

• Johnson & Johnson Baby Lotion & Baby Wash• Ilex (tubes)• Batteries for toys (AA, AAA, C & D)• Boppy cushions and covers• Baby bottles (non-breakable)• Night light toys (Glow worm, etc.)• Children’s and Teen DVDs (G & PG rating)• Graco Pace Click Connect Stroller, 3-wheel design,

40”H x 19”W x 27”D (Approximately $90)• 4moms MamaRoo Infant Seat - Grey Classic

(Toys R Us, $239)

House Supplies Wish List:• Gift cards in any denomination to help purchase supplies

(Target, Walgreens, Staples, Visa/Amex)• Paper towels (30-40 rolls are used monthly)• Laundry detergent - “ALL Ultra Free Clear Liquid” brand• Ivory Soap liquid detergent• Keurig K-Cup Coffee packs

(for clinical staff, family members & guests)• Rubbermaid plastic Mixer-mate bottles, 2 quart size

(to hold formula)• Boxes of Kleenex (30-40 boxes are used each month)• Colorful fitted crib sheets• Solid color fitted twin sheets and pillowcases• Hand sanitizer (8oz or 12oz)• Custom window seat cushion

Office Supplies Wish List:• File folders (1/3 cut)• Post-it notes• First Class postage stamps

AHK General Wish List:• Rigid 1 gallon 6.0 Peak Wet Dry Vac (Home Depot $99)• Milwaukee Flow Back Solid Tire Hand Truck 600lb.

capacity (Home Depot $49)

Jaxon with mom

Adrianna with RN Deb

More Ways to Get Involved Wearealwaysopentonewandcreativeformsoffundraisingandcommunityinvolvement.Ifyouhaveanideaorareinterestedintalkingtous,[email protected].

Affiliated with

7South721Route53Naperville,IL60540

Board of Directors

JoshPrangley,Chair TheresaDanko,Vice ChairJuliaChappellDeborahA.GriskoMichaelHoffmanMartyKoehlerRichardA.MarkMatthewMullarkeyPaulaNobleChristopherSchenkenbergMichelleStephensonJessicaStrausbaughMaritaSullivan

President’s Council

DanAultPaulBogdanskiJuliaChappellCarleyDiedrichAngelaFiggSheilaGallagherMarciaGlennJosetteGoldbergBreganHerroldJenHorsleyPaulJesinskisCarolynM.JohnsonAnnKarchBethanyKeownBillNeustadtKatieOssmanTomRothSusanJ.SchwartzMattSzeghySusanTromansKathyWennerstrum

Our mission at Almost Home Kids is to provide transitional care in a home-like setting to children with complicated health needs, training for their families and respite care.

“Like”usonFacebookfordailyAlmost Home Kidsupdates!

Contactusat630.271.9155orvisitourwebsiteatalmosthomekids.org

Key Staff

DeborahA.Grisko,RN,President and Executive Director

Administrative:

BethanyFaxel,Sr. Director Business Operations LindsayRawlings,Sr. Affiliation Project Manager RaeannOlsen-Jackson,Director of Development JudithMcLean,Director of Marketing & Communications LoriHannon,Director of Business Development & Strategy GailLinhart,Director of Operations LisaSnow,Community Outreach Coordinator LizaLarsen,Special Events Coordinator

Clinical:

PeterJ.Smith,MD,MA,AHK Chicago, Medical Director VickiUribe,MD,AHK Naperville, Medical DirectorBobAndersen,MD,AHK Naperville, Medical DirectorAnnKarch,MD,Associate Medical Director MikeHoffman,MD,Associate Medical DirectorLayenieAnderson,RN,CCM,BADirector of Case ManagementAprilAlexander,MBA,BSN,RN,Director of Nursing

Writers, Editors and Key Contributors:

BetseyO’Brien,JudithMcLean,LisaSnow,LizaLarsen,LizDodge-Lechko,MatthewJ.Grubb,CFP,RaeannOlsen-Jackson

homenews - almost home kids...for many families, who care for a child with medical complexities,...

Documents