Saturday, October 3, 2015


What the what?  When did it become OCTOBER?  Last I knew it was a hot, Sunday Funday at home with the kiddos on August 9th!  All kidding aside here's a recap and some low down on life with the Koesters' right now:
Emily was inpatient at Children's Hospital in Omaha, NE for 16 days, eight of which were a scary blur and the other eight had us wondering what parts of our Emily would be coming back to us.  Then she was transported to Madonna Rehab Hospital in Lincoln, NE for 19 days.  The progress she made was super.  Emily has now been home for 22 days!  Her days are filled with outpatient aqua therapy, speech and OT @ Procare 3 in Omaha, NE, PT with Physicians Choice of Omaha, and homebound school. Sprinkle in some doc apts and figuring out a new regular family routine and bam- that's how it became October without me knowing it!  Week to week Emily smashes goals set for her.  That's our girl!  Our MIGHTY LITTLE GIANT!  The cognitive piece continues to be the challenge,however; the brain is such an amazing thing and it has been so interesting to witness her transformation and recovery day to day.  Those of you who know me well realize how much of a health nut I can be and so this is so intriguing!  Now Joe's brain and mine have taken a toll and we are doing are darndest to dig out of the spirally depths of doom and despair we have felt and I think we are making it above ground- finally.  For whatever reason this latest battle really did a job on we parents- it's not like she hasn't had really scary  and intense times before, and she will continue to have them- it's okay- she will- it's just part of - but this one kicked our batooskas!  Thank goodness children are more resilient than we adults!
Two more things: ONE- in EIGHT days the main event happens!  Joe and I are so grateful to those who stepped in for us and took over and have made this year's Annual Little Giant 5K Trail Run such an amazing event to be held!  YOU DO NOT WANT TO MISS IT!  Stroll, Walk, Jog, Run- whatever- it is a timed event for you athletes out there, but it is also a fab surrounding in the country to hang out, get in some exercise and family fun!  So many new and cool things happening I can't even....
 SECONDLY, in light of Dwarfism Awareness Month and one of the reasons we run the Little Giants Foundation I realize Joe and I have much more work to do!  Not only do we need to educate, enlighten and enhance the medical world and others about Emily's rare disease- SIOD- Schimke Immuno-osseous Dysplasia- a rare genetic DWARFISM disease, but we need to do so for TYPES of DWARFISMS!  Albeit- Achondroplasia is the most common type and rings true for here in the MIDWEST, there are over 200 types.  Emily has a rare type of the SED form.  AND please do NOT confuse dwarfism with being a disease because it is NOT in and of itself, however; there are some types- like Emily's that do accompany a disease.
Well, Halloween is around the corner and now it is time to get excited for all things FALL and Pumpkiny!  Come out Oct 11th for all of that and more while supporting a cause for our Emily and other Little Giants now and in the future!
A proud mama bear of a child with dwarfism!
sites for more info:
Understanding Dwarfism