Tuesday, October 8, 2019

What Happens Next

Every day Emily keeps improving.  Every day brings its own set of challenges, however; we keep counting on our blessings as they will always outweigh the other.  We had Emily's follow up since discharge with her primary doc- Dr. Finken on Monday and we just adore him!  His calm voice and sincere love for Emily as we have all been through so much over the past 12 years is so reassuring.
One of Emily's biggest battles since this recent hospitalization is within herself and the stress she carries within her heart of what might happen next. 
Emily has always been acutely aware and so wise beyond her years throughout this disease.  This has served her in so many ways, yet now it is causing her to be fearful of what lies ahead.  She knows that she has battled so many times and won, yet she also knows how hard the battles are to recover from.  
It is always difficult for us as parents to see our children suffer for any reason and it is extremely difficult to watch over and over and over again.  I am one of the more positive people that I know and I also have a lot of strategies and disciplines in place that I come to daily to rise above each day.  And with the help of family we are working to help Emily with coping strategies to feel less fearful and safe for whatever happens next, whenever it may or may not happen.  

Here is some more good from our partnership with Stanford:

“In addition to determining the length of telomeres in the blood cells of SIOD patients, the Lewis lab is determining if two important factors in maintaining telomere length – the enzyme telomerase and hexanucleotide telomere RNA  - are reduced in SIOD patients.” – Dr. David Lewis

We are thankful to all of our donors and supporters on behalf of our Emily and #SIOD research.  
We are blessed!
https://thelittlegiantsfoundation.org/


Wednesday, October 2, 2019

When in an emergency...

 I have carried around different emergency information for years on Emily in the event of...and just a couple of years ago one of our hospitals that we frequent came out with an “emergency information form” for children with special health-care needs that essentially touched on everything I carried with me for years, but it’s done for you and it’s proven  very helpful when visiting all the different specialists and doctors and in different emergency or crisis situations.
 I thought this could be helpful for other people and not only for your children but for yourselves, for your family members-whether they have special health-care needs or not.  It’s a good practice because you never know what situations might arise in your lives and also it is a conversation to start to have with your family so in the event of an emergency or a crisis situation everyone knows the game plan. (With the holiday season approaching  this can be a great time at family gatherings to make sure all these things are in place)
 Here are my top tips:
1: ask your hospital if they have an emergency information form to plug your information into!
(Info such as: name- date of birth -primary language -male or female -your home address -parent or guardian and your primary care team and phone numbers -closest emergency room and hospital -any allergies medical or otherwise- any medications that you take -any diagnosis or baseline physical exams -And finally any emergency management things like problems or treatment considerations and dates - Be sure to have signatures on the forms!)
This is something you can easily type up for yourselves to carry with you but it is nice to have it documented for you or a loved one’s care management plan in your medical records.
2: have that conversation about being a donor for eye, tissue, and organs & also what to do in event of an emergency.
3:Know your Blood Type ( Again your primary care team can most likely provide this for you or if you are a regular donor you may already know what your type is our friends over at NCBB in Nebraska can easily help you figure out what your blood type is)
 All of these may be challenging and difficult conversations to have with families, however; it’s a lot easier to do so in a non-crisis situation than it is to do at that point and hopefully you won’t have to use it, but it is something that you can carry with you.
4: my last step is to make multiple copies in a bright color and keep it on your person either laminated or in a ziplock with your child, at their school, at the facility and anyone else that might care for them so everyone has the same information.
Again  this has proven  to be helpful countless times for us as a family and so much easier to hand over in any situation rather  than having to come up with or remember all of this on your own.

Tuesday, September 24, 2019

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
 

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!