Best Laid Plans...

I had originally meant to update this post today with all things great and successful about our 6th Annual LIttle Giants Farm Run.  The event was a GIANT success, however; these days to follow have been rough. 
Emily had a planned PICU inpatient stay at UNMC to monitor some things for several days and although we were looking for some answers, we had hoped this wouldn't happen, but this is why we are here, in a safe environment should anything happen as it did today.
Emily had a grand mal seizure today and has lots of little activity since yesterday.  My heart sank and a ton of emotions welled up as I held her hand and watched and talked her though it along with a team. 
Fortunately, so far this time she came back to us quicker than the debilitating ones like this in 2015.  I promised her she'd be out by Homecoming Friday night before this today and hope now we can get her in a safe place.  She is afraid to go to sleep and didn't know and doesn't know when they happen, but wanted to know.
She is saying some things that are off, and fighting sleep, but in a good place right now.
Now to figure out these two types she is having and what else to do for her once she stays stable.
We are thankful for the familiar faces and the new we get to see here and even though how I had arranged the week for our family while here, that all changed today and we will take it one step at a time as we always do and BELIEVE!
A very sleep deprived Mommy Erin right now-
Tomorrow is a new day!
EK

 

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

 

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

 

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!

 

Hello September!