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 [email protected] 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:[email protected]
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 [email protected]. 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
