almosthomekids.org Fall/Winter20181

JD’s Forever Home

HomeNewsFall/Winter 2018

JDwasbornwitharthrogryposisandbilateralclubfoot,meaningthatthejointsofhishandsandfeetweresharplycurved.BeforecomingtoAlmostHomeKids,hehadalreadyrequiredseveralsurgeriestohelprepairhisjoints,hehadabenigntumorremoved,atracheotomywasplaced,andagastricfeedingtube(G-tube)wasinserted.

Unfortunately,duetothesesignificantmedicalissues,aswellasmobilityanddevelopmentalchallenges,JD’sbirthfamilyfelttheywereunabletocareforhim.WhileatAlmostHomeKidsinNapervillefortransitionalcare,hebecamepartofthefostercaresystem.

AHKhelpedidentifyafosterfamilythroughtheIllinoisDepartmentofChildren&FamilyServicesforJDandtrainedtheminthecarehewouldneedathome.JD’s(nowadoptive)momexplainedthat,despitehisextensivemedicalneeds,thefamilywasinstantlysmitten.“Wewerenotpreparedforachildwiththelevelofcarethatheneeded,butallofusfellinlovewithhimthemomentwemethim.”

JDhasmadeamazingprogresswithhisnewfamilysinceleavingAHK.Heisfullymobile,uptogradeinschool,andindependentinalmostallaspectsofhislife.JD’smomwoulddescribehimascurious,affectionate,andgood-natured,withadrysenseofhumorandoutgoingpersonality.Hegetsalongjustaswellwithadultsashedoeswithkidshisownage.Heisalsoverybraveandworkshardtoovercomeanyobstaclesthatgetinhisway.

JDhasnotneededtocomebacktoAlmostHomeKids,exceptforaveryspecialvisittoseethenursingstaff.Hestillhasphysicaltherapyandwillstarttrainingwithaservicedogsoon,butheisthrivingwithhislovingfamilyinhisveryownforeverhome.

“We were not prepared for a child with the level of care that he needed, but all of us fell in love with him the moment we met him.”

JD dressed as future doctor

JD visiting with his family

2

Our FamilyOur Growing Family

Afterseveralyearsofplanning,collaboratingandconstruction,AlmostHomeKidsatOSFHealthCareChildren’sHospitalofIllinois,isfinallyareality.AlmostHomeKidsopeneditsdoorsinOctobertochildrenwithmedicalcomplexitiesandtheirfamilieslivinginCentralIllinois.

Ben,anamazing2-year-oldboywholovestoshakehisrattle,turnthepagesonbooks,andlistentomusic,isthefirstchildtoofficiallytransitiontoAlmostHomeKidsatOSFHealthCareChildren’sHospitalofIllinois.Benspentover24challengingmonthsintheNICUatOSFChildren’sHospital,andeventhoughhishealthwasstableandhewasreadytoleavethehospital,hisfamilyneededtomakehomemodificationstosupportallofhismedicalequipment-Inaddition,homenursingcareneededtobesetup,andhisparentsneededtrainingonhowtocareforhimandhisequipment–allservicesAlmostHomeKidsisabletoprovideBenandhisfamilywithduringhisstayatAHK.AsresidentsoftheQuadCities,Ben’sfamilyhastakenadvantageoftheconvenientnewAlmostHomeKidsinPeoriaandenjoythebenefitsofbeingthehome’sfirstfamily.

Thenewhome,whichisownedandoperatedbyOSFHealthCareChildren’sHospitalofIllinois,isconsiderablylargerthanthelocationsinChicagoandNaperville,withamplegardenandgreenspacesurroundingthebuildingaswellasplentyofparkingspacesforfamiliesandstaff.Thecorridorsareextrawidetoeasilyaccommodatewheelchairs.Aspaciousgreatroomwithvaultedceilingsandawelcomingkitchenwithdiningareaensuresfamiliesandstaffcanmaximizetheirtraining,aswellasrelaxwiththeirchildduringvisits.Thereare12privatebedroomswithadjoiningJack-and-Jillbathrooms,allowingfamiliesmoreprivacyfortheir24-hourtrainingperiodpriortotakingtheirchildhome.

OtherelementsmakingthenewAlmostHomeKidssoremarkableareaseparatetherapyroom,consultrooms,medicationandnutritionrooms,aswellasspaciousadministrativeoffices,aconferenceroom,aspectacularwrap-aroundporch,anaccessibleplayground,andefficientlylocatedambulancebay.

Stantec,thearchitectsoverseeingtheproject,wenttogreatlengthstoensurethebuildingwastailoredtofitintothelargelyresidentialsettingoftheneighborhood,andendeavoredtoblendtheprairiehome-styleoftheareawiththeneedsofabusyAlmostHomeKids.

“WearethrilledtopartnerwithOSFHealthCareChildren’sHospitalofIllinoistobeabletobringourvitalprogramtoCentralIllinoisandbesoconvenienttofamilieslikeBen’s”saidDebbieGrisko,AHK’spresidentandexecutivedirector.“Itiswithoutadoubtgreatlyneeded,andafteranenormousamountofduediligenceandcarefulconsideration,wehavetakenthebestelementsofNapervilleandChicagotodevelop

theidealAlmostHomeKids.Weareabsolutelydelightedwiththeresultsofthisgorgeousnewhome.”

New living room space at AHK Peoria

Bright open spaces at AHK Peoria

Back patio at AHK Peoria

Ben with AHK Peoria RN Theresa

almosthomekids.org Fall/Winter20183

Volunteers: In Their Own Words

Volunteer of the Quarter: Becca Wallig Naperville, Fall 2018

Becca WalligisaremarkablevolunteeratourNapervillesite.ShejoinedourvolunteerprogramthesummerafterherfirstyearofmedicalschoolatMidwesternUniversity(DownersGrove).Beccacamewithsomuchenthusiasmandwaswillingtohelpwherevershewasneeded.AlongwithvolunteeringacoupletimesaweekasaRecreationalVolunteer,Beccaalsovolunteeredtowaterouroutdoorplantsallsummerlong,twiceaweek,asapartofouroutdoorsummervolunteerteam.AlmostHomeKidsisgratefulforallBeccadoesforAHK!How and when did you come to be involved with Almost Home Kids? IstartedinMay2018whenIwaslookingforaplacetospendmyfreesummerhours. What is the most enjoyable and rewarding aspect of your work at AHK? Thesmiles.Allthosechubbycheekedsmiles. 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? NotthatIwasaGrinchbefore…butItrulyfeellikemyhearthasgrownthreesizes!Ihavecertainlygottenbetteratlaughing,beingpresentinthemoment,andnottakingmyselftooseriously.Would you recommend AHK to friends as a good place to volunteer? Absolutely!It’slikefruitandveggiesforthesoul—givesmeenergyfortherestoftheweek!

Volunteer of the Quarter: Rena Lovato Chicago, Fall 2018 Rena LovatoisoneofourawesomevolunteersatourChicagosite.Shehasbeenvolunteeringsince2016andwearesofortunatetohaveheronourteam!Renahasdonatedover100hoursofvolunteeringtoAHK.Sheissocompassionatewitheachandeveryoneofthechildrenshehastheopportunitytovolunteerwith.Staffappreciatesherconsistencyincomingeachweek.WearethankfulRenahaschosentosharesomeofherdayeachweekatAHK.

How and when did you come to be involved with Almost Home Kids? AnurseatLurieChildren’sHospitalPICUwhereIalsovolunteer,mentionedAHKtome.IlookedattheAHKwebsiteandIreachedouttotheVolunteerCoordinatorin2016.IfeltitwasagoodadjuncttothevolunteeringworkIwasdoingatLurie’s.What is the most enjoyable and rewarding aspect of your work at AHKThemostenjoyablepartisseeingthechildrensmilewhenIplaywiththem.Iwasplayingwithalittlegirlwhowas2yearsoldandthenursecommentedtomethatshehadn’tseenhersmilethatmuchsinceshehadcometoAHK.Ihadanothergirlwhowas4andshestartedcryingwhenIleftbecauseshedidn’twantmetoleave.IalsoLOVEholdingthebabies!!ArewardingpartformeisthepraiseIgetfromsomeofthenursesfortheirgratitudeformypresence.Iamanurseandknowwhatit’sliketohavesomeonehangoutwithyourpatientandkeepthemhappyforacouplehourssotheycanattendtootherclinicalthings.

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? MyvolunteeringroledefinitelyallowsmetousemycaringrolethatIgetfrombeinganursewhenIplaywiththechildren.SinceIworkatNorthwesternandcareforadultpatients,italsogivesmeachancetolearnaboutcaringforchildren. Would you recommend AHK to friends as a good place to volunteer? IdefinitelywouldrecommendAHKasaplacetovolunteerandalreadyhave!Igetsomuchjoyfromplayingwiththekidsandholdingbabiesthatitwarmsmyheart.

Becca Wallig Naperville Volunteer of the Quarter Sept 2018 & Elisabeth

Rena Lovato Chicago Volunteer of the Quarter Sept 2018

4

Our Community

Formanyofus,ourgreatestasset,apartfromperhapsourhome,isourIRAorotherretirementplan.TheIRAholdsthisdistinctionbecauseCongressdesignedittoencourageinvestmentandfuturegrowth.

ButastheassetsinyourIRAgrow,sodothetaxesthatwillbeowedinthefuture.WhenyourchildrenorgrandchildrenreceivetheassetsinyourIRA,theyalsoreceivetheburdenofthetaxesdueonthem.Thiscanseriouslydiminishtheirinheritanceandresultindisappointmentforyouandforthem.ThegoodnewsistherearewaystoplanforyourIRAtodeliverallitsexpectedbenefitswithasfewtaxesaspossible.Wecangiveyousomeideastodiscusswithyouraccountant,yourfinancialadvisor,andyourattorney.Thesewillensurethatyourfamilyandyourlegacybenefitwhileminimizingtaxesforeveryone.

Asyouprovideforyourfamilyinyourestateplans,besuretoconsiderthesmartestwaytopassassetstoyourheirs.ThinkaboutgivingthemsomethingotherthanIRAassets.Also,youmightthinkaboutgivingawayyourunusedIRAassets,sotheassetswillbepassedwithnotaxdue.Whenyougiveyourassetstoaqualifiedtax-exemptorganizationlikeAlmostHomeKids,wereceive100%ofyourIRAproceeds.

However,wewouldneverrecommendgivingyourIRAtouswithoutalsoemphasizingthereareotherassetsandwaystoprovideforyourfamilywithoutnegativetaxconsequences.Someofthebestassetstogiveyourchildrenincludeyourstocksorhome.Theseassetsstep-uptofairmarketvalueinyourestate,andcanbesoldlaterwithlittleornotaxdue.Calloremailustolearnmoreaboutthevarietyofwaysyoucanpassonassetstoyourfamilyandtothecausesyouloveinthemostbeneficialwaysforallconcerned.Please contact Raeann Olsen-Jackson at rjackson@almosthomekids.org or 312-282-7081.

Considering an IRA Donation?

“It’s so important to our family to help people in need. Almost Home Kids makes such a difference in children’s lives, and for their parents too. Planning our gifts to charity has been very rewarding ” Mary&BillNeustadt,pastChairmanAHKBoardofDirectors

Mary and Bill Neustadt

Giovanni & Amy, AHK Social Worker

almosthomekids.org Fall/Winter20185

Giving Tuesday is November 27, 2018.It’sdescribedasa“movement”inphilanthropiccirclestoencourageearlygivingtokickofftheholidayseason.ItoccursafterThanksgiving,BlackFridayandCyberMonday.Pleasemarkyourcalendarforthisimportantday.Anygiftmadeon-lineon11/27only,willbematcheddollar-for-dollarbySkenderFoundation.TheColemanFoundationisalsomatchinganygiftover$175madeon-linefrom11/1–11/27.Don’tmissthisopportunitytodoubleyourimpact!

Visitwww.give.almosthomekids.org/donate

It’s On - Are You In?

Areyouafederalworker?YoucanshowsomeloveforchildrenwithspecialhealthcareneedsbygivingtoAlmostHomeKidsthroughtheCFCworkplacegivingprogram.Retireescanparticipatetoo!Besuretolookforusintheupcomingenrollmentperiod,ourdesignationnumberis79874.

Federal Employee CFC

Cassidy enjoyed being outside with child life and nursing staff

Lavar and Terri from Leepfrog Therapy sharing a smile

St Scholastica students helped with the landscaping in Naperville

JD saying bye to AHK staff

6

Getting Involved with AHKSummertime Fun with AHK

ThispastsummerwashighlightedbyuniqueandmemorableeventsbenefittingAlmostHomeKidsinChicagoandNaperville.WineandfilmloversconvenedonalovelyeveninginJuneatLarkinHallintheFultonMarketDistrictofChicagoforourSummerTastingSoirée.Guestssampledfinewinesfromacrosstheglobe,andmingledwiththeDirectorJasonWiseandProducerChristineWiseofSOMM–acriticallyacclaimeddocumentaryseriesonwineandallofitscomplexities.

OnJuly4thweekend,AlmostHomeKidsonceagainprovidedanenthusiasticcrewofvolunteersforNapervilleExchangeClub’sannualRibFest.Thisisoursixthyearprovidingagroupofvolunteerstoservebeerandsodatotheannualevent’sthirstypatrons.ProvidingthosemanyvolunteerhourshasmadeanimpactatAlmostHomeKids,aswehavebeenawardedmorethan$12,000fromtheNapervilleExchangeClubovertheyears.

OursecondannualCocktailsforaCauseonAugust23,2018wasonceagainarousingsuccessthankstoagreatcommitteeandfabulousnightontheChicagoRiver.KevinShea,anAHKParent,eloquentlyaddressedthecrowdofbusinesscolleagues,AHKstaffandfriendstosharehowAHKhasimpactedhisfamily’slife,andhowthesupportofhiscolleaguesmakessuchadifferencetoourmission.

Sincenosummeriscompletewithoutsomefuninthesun,weclosedoutthesummereventswithabeautifulFridayinSeptemberforour8thannualGolfMarathonatZigfieldTroy.

CommunitysupportisvitaltoourmissionandwearethrilledtoofferdiverseeventsthatnotonlyraisesignificantfundsforAHK,butalsospreadawarenessforourmissiontonewfriendsandneighborsthroughouttheChicagolandarea.

Share the Care Ball, An Evening in Paris TheromanceandglamourofPariswasonfulldisplayattheDrakeHotelonOctober26,2018aswecelebratedourseventhannualSharetheCareBall,AnEveninginParis.Co-Chairs,SuziBramsonBrooksandJenHorsley,alongwiththeirtalentedcommittee,treatedgueststoanunforgettableParisianexperienceasguestsperusedoursilentauction,enjoyedFrenchthemedentertainmentanddancedthenightawaytotheincomparableKenArlenEvolutionOrchestra.Eventhonorees,RebelRobertsandGrantThornton,inspiredattendeestosupportourcauseinextraordinaryways.PaigeRichards,anAHKparent,leftnotadryeyeintheballroomasshedescribedherfamily’slife-changingexperiencewithAlmostHomeKids.

Upcoming Events

Shamrock Shuffle 03/23/19atGrantPark,Chicago9:00AMJoinTeamAHKasanindividual,orselecttostartateamandrecruitfriendsorfamilytomakeadifferenceatAlmostHomeKids.EmailLizatosignup:elarsen@almosthomekids.org

Naperville Gala4/12/19atEmbassySuites,Napervilleat6:30PMSavetheDateforourannualgalainthewesternsuburbs.

Share the Care Honorees with Debbie Grisko & Board Chairman Josh Prangley

Nursing staff with Kevin and Kathy Shea at Cocktails for a Cause

Volunteers from Almost Home Kids at Naperville’s RibFest

almosthomekids.org Fall/Winter20187

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

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

• Unscented Baby Lotion & Baby Wash• Ilex diaper cream (tubes)• Batteries for toys (AA, AAA, C & D)• Boppy cushions and covers• Evenflo 8 oz Baby bottles (non-breakable)• Night light toys (Glow worm, etc.)• Graco Pace Click Connect Stroller, 3-wheel design

House Supplies Wish List:• Sony Cyber-shot DSC-RX100 Camera (x2 - Naperville

& Chicago)• $20 gift cards from Target for parents taking the time

to complete IRB Study Survey• Keurig 2.0 K-Cup Coffee packs

(for clinical staff, family members & guests)• USPS First Class Stamps

More Ways to Get Involved Wearealwaysopentonewandcreativeformsoffundraisingandcommunityinvolvement.Ifyouhaveanideas,please contact Liza Larsen at elarsen@almosthomekids.org. Juan & Katie, AHK Child Life Specialist

Cassidy with volunteer DeniseOlliviah enjoys therapy through play

Affiliated with

7South721Route53Naperville,IL60540

Board of Directors

JoshPrangley,ChairTheresaDanko,ViceChairPraveenAdhiJuliaChappellBrendaDavisYonheeGordonDeborahA.GriskoMichaelHoffmanJenHorsleyMartyKoehlerRichardA.MarkMatthewMullarkeyBillNeustadtPaulaNobleKyleOlsonChristopherSchenkenbergMichelleStephensonMaritaSullivan

President’s Council

JenHorsley,ChairMartyKoehler,ChairDanAult,ViceChairGeorganneBinniePaulBogdanskiJuliaChappellTheresaDankoCarleyDiedrichAngelaFiggSheilaGallagherJosetteGoldbergKarenGoodmanYonheeGordonKimberlyGroveBreganHerroldMichaelHoffmanPaulJesinskisCarolynM.JohnsonAnnKarchBethanyKeownRichardA.MarkMatthewMullarkeyBillNeustadt

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

President’s Council Cont’dPaulaNobleKatieOssmanChristopherSchenkenbergSusanJ.SchwartzMaritaSullivanMattSzeghySarahTromansKathyWennerstrumBlairWhitman

Key Staff

DeborahA.Grisko,RN,PresidentandExecutiveDirector

Administrative:

RochelleHoward,Sr.DirectorBusinessOperationsLindsayRawlings,Sr.AffiliationProjectManagerRaeannOlsen-Jackson,DirectorofDevelopmentJudithMcLean,DirectorofMarketing&CommunicationsDeniseNora,DirectorofBusinessDevelopment&StrategyGailLinhart,DirectorofOperationsLindseySmith,ProgramCoordinatorLisaSnow,CommunityOutreachCoordinatorLizaLarsen,SpecialEventsCoordinator

Clinical:

PeterJ.Smith,MD,MA,AHKChicago,MedicalDirectorAnnKarch,MD,AHKNaperville,InterimMedicalDirectorMikeHoffman,MD,AssociateInterimMedicalDirectorAmyGaletti,MSN,RN,FNP-C,DirectorofNursingLayenieAnderson,RN,CCM,BADirectorofCaseManagement

Writers, Editors and Key Contributors:

CarolanneMaksimowicz,JudithMcLean,LisaSnow,LizaLarsen,RaeannOlsen-Jackson,VitaLerner,LindseySmith