Tuesday, September 17, 2019

It's EVENT week!

Mostly what is on our brains and hearts is the upcoming LGF Farm Run this Sunday, Sept 22nd!
IN the mean time we still have doctor appointments, treatments, therapies and school to attend as well.
Had Emily's kidney follow up appointment on Monday. The good news it that the medicine to keep her protein spilling from increasing seems to be doing it's job.  So the question is then why is she spilling protein from her daddy's 11 year old transplanted kidney?  The kidney is older and it could be beginning signs or it could be reflux of function or more unlikely, yet who knows with Emily and #SIOD, it could be the FSGS presenting again.  So we continue to monitor with labs and urine cultures throughout the year. 
As usual, Emily needs to DRINK MORE WATER!  Those following us awhile know this is a challenge for Emily and she gets fluids at night via her G-Button to supplement, yet she still needs to drink more.
Tomorrow Emily has her every 21 day infusion for IVIG followed by her quarterly pamidronate infusion.  It will be a long day for her. 
We are super excited for our Farm Run though and we are so thankful to our many sponsors, volunteers and registered runners and walkers!  You all are making a difference for SIOD research!
Here is the link as there is still time to sign up!   https://buff.ly/2JwEWxW
 


Tuesday, September 10, 2019

September Super Start

September is really off to a super start all things considered!
Let's start with the super: Emily was surprised with her Sweet 16 birthday gift from our dear friends Renee and Reese Jaeger with a girls night to see Thomas Rhett, Dustin Lynch, Russell Dickerson, and Rhett Akins in concert!  That same weekend, ironically was the opportunity for Taylor-Jo go to her sister's camp and experience the COHOLO life! (this is the cancer camp Emily attends each July and in September it is open for the SIBLINGS!)

Emily has been to a few docs and restarting Aquatherapy in addition to her horse therapy with HETRA.  We saw the ortho for her ankle lumps and the jury is still out on these even with xrays and ultrasounds we have ruled out what they are not at least.  Today she saw our sleep medicine doc and will try a few tweaks in succession to help with her energy level and leg restlessness at night.

We have our 6th Annual LGF Farm Run coming up quick!  Here's the registration link again! And this year we are adding a cornhole tournament! YEE HAW!

Farm Run Reg Link

 

Tuesday, September 3, 2019

Abundantly Thankful

Yesterday was probably one of our top 10 days this year!  We had a fabulous family day and much needed retreat with nature before revving up again this month with all the things school, doctors and fundraising!
Here are some pictures of our day that started at a local Sunflower Farm, Emily purchasing her own guitar with some of her birthday money, picking produce from our fruit trees and enjoying our gorgeous Nebraska sunset!

 


Tuesday, August 27, 2019

Activities: Drive2Ride

Often times I get the question- even from her doctors- as to what I think is the reason Emily has made it to 16 years old despite the odds stacked against her. One of my answers remains the same because I feel it is a combination of things, but a top two answer is her activities!  She is in some sort of therapy at all times, sometimes multiple therapies and we have worked to find a good amount of time to be spent on her quality of life activities and getting enough rest as to not land her in the hospital.

Horse therapy has been one of those activities that we have prioritized for her every week for the past 3.5 years ( except for the other medical necessities that arise or unbearable weather).
Emily loves to ride her horse Rainbow and you can read more and decide if you'd like to contribute to her team this year to help her and her friends she has met through HETRA to keep riding because insurance does not cover this type of therapy yet.

Here is Emily's link: Team EMILYK
https://www.classy.org/team/246678

Feel free to share as well!

Tuesday, August 20, 2019

Celebrate Good Times- Come On!

                         We celebrated 1 year as a founding board (3 not present) and 5 years as a non-profit!
A saying comes to mind that reminds me of both our Emily - the voice and face for over 12 years with #SIOD- and our Foundation- "Though she be but little, She is Fierce!" Shakespeare

Thank you to every single person we have ever encountered and have the privilege to know through this journey.  Without each one of you we could not have some this far!  More celebrations for you our "BELIEVER" friends and let's also celebrate another year Emily gets to go to school!  Enjoy our  FIRST DAY BACK photos!
                                                

Tuesday, August 13, 2019

Gearing up to go Back2School!

One of the questions I get most often as Emily's mom is: Is Emily able to attend school?
The quick answer is, yes. The more important detailed answer is yes,
on a modified schedule. Emily did NOT attend preschool due to #SIOD.
She attended only her 1st day of Kindergarten due to SIOD.
She was taught at home and in the hospital for several years
after and on extended hospital stays due to her SIOD.
This is part of living with a rare genetic life limiting disease
or any chronic kind of illness. Emily only attends school 3 days
a week for 3-4 hours on those days. This seems to be her best
quality of life school zone. Gretna Public Schools has been amazing through it all! 🙌

She takes many medications that we give before she goes, she requires more sleep,
more cognitive rest and has doc and therapy appointments mostly
on the other 2 days. Not to mention risks of infection! Is this schedule
for ALL SIOD kiddos? No. Honestly many of the SIOD children either
don't live long enough or aren't old enough yet. Another reason why
your donations matter. Another reason we must keep raising funding
to help prolong these children's lives so they too may attend school in
whatever way that looks for them and their medical necessities. 

We managed to sneak in quite a bit of last minute summer fun this past week
before school begins for us on Thursday. Our friends, Neely and her human
Shannon came by during Emily's IVIG infusion to help distract and comfort.
We played at a friends pool, got back to school hair do's, went to the doctors
and therapies and enjoyed some time at the Children's Museum.
We hope our readers have enjoyed their summer as much if not more
than we have and remember to stay safe, have fun and wash those hands!