Thursday, April 18, 2019

Emily Update

There is kind of a lot of a little that is going on with Emily right now. Her left ankle is better, however she is having increased days and amounts of headaches (perhaps migraines even) which can be prevalent in #SIOD. Increased spilling of protein from her kidney. At the same time her daddy Joe had his kidney stone surgically removed earlier this year, Emily has increased crystals from his transplanted kidney (citrate and calcium). So she is on one additional med for the protein spill and we will try increasing even more water and lowering sodium intake for the crystals. Now she is having troubles with her left arm. Emily has missed quite a bit of school and her therapies these past two months to her already modified schedule because of these pains and it is affecting her quality of life, which her dad and I strive to keep at the best level we can! Through it all her doggy, Pumpkin is by her side and helps to make it all a little bit better.

Tuesday, February 26, 2019

As A Community We Can...

All children with SIOD have extremely low immune systems.
During "flu" season we have to be extra cautious with everyone really. Extra hand washings, masks for doc apts even if we aren't the ones sick, and changing clothes when we get home from school, outings or events.😷
We're used to and have gotten pretty darn ingenious about practicing really good hygiene, especially these winter months, because we know how detrimental even a common cold could turn for Emily.
One of our greatest concerns is one of the NUMBER ONE causes of DEATH in an #SIOD child...infection. #believeinemily #littlegiants #raregenticdisease #infection 

As a community we can all do our best to establish healthier hand washing routines, staying home when sick and with fever and staying respectfully away from those we know are also susceptible to infections.

Together We Can Do Something Extraordinary!

Sunday, February 10, 2019

Wear RED for Emily & SIOD

One more day til we #wearRed to raise awareness and educate others about the Little Giants Foundation and #SIOD! ❤ (2-11-19) Take your pics,πŸ“· postπŸ“± and use the hashtags #SIODawareness #believeinemily!  AND wear RED❤ tomorrow to honor Emily and her Governor proclaimed Nebraska Little Giants Day!!😚 #littlegiants #believe

Friday, February 1, 2019

Because of you...

SIOD research funding:
Past SIOD tissues from the Canadian lab were transferred to Stanford in 2017 where they are exclusively working on #SIOD research.

Because of YOU this is possible!
YOUR support is making this testing possible.

During our affiliate Midlands Community Foundation Matching Charitable Program over the holidays you all contributed $3,782.00!!!

 Now to keep Stanford funded and working! #believeinemily #littlegiants #researchfunding #midlandscommunityfoundation #Nebraska #raisingawarenessforSIOD #raregeneticdisease

Sunday, January 20, 2019

Kidney News & #SIOD

Eight months with no surgeries...until the New Year. This time it's the Jeek Masters. So those new to our journey, or for those who forgot, Big Daddy Joe Mo donated his kidney to Emily 10.5 years ago. He had not one, but 4 incisional hernia repair surgeries over those next 3 years post transplant and would do it all again.  Emily has #SIOD a rare genetic life limiting dwarfism disease and he bought her some time. So when he started peeing blood a few weeks ago concern was obviously raised. Three doctor appointments and a CT scan later and here we are  getting his large kidney stone removed.  In his surgeons words, "since you only have the one kidney now we treat this emergent to make sure we keep that one working at its best."
The girls helped Joe come up with his 2019 word prior to all of this and the word is STRONG.  Good work girls, he is our rock.  Strong in body, mind and emotion for "his girls"!
Edit UPDATE on our patient: He is finally resting and about back to baseline glad it is done. He had a stent removed Monday, which helped!πŸ™„
In light of the recent kidney challenges between Emily's spilling protein and Joe's kidney stone procedure, I wanted to bring focus to the renal disease portion of #SIOD .
GeneReviews states, "All affected individuals have progressive steroid-resistant nephropathy, usually developing within five years of the diagnosis of growth failure and terminating with end-stage renal disease (ESRD). All tested individuals have T-cell deficiency and associated risk for opportunistic infection, a common cause of death."
A friend wrote recently on one of my posts and I feel this is our mantra this year: "There is Strong and then there is Koesters Strong!" #believeinemily #littlegiants #dwarfismawareness #daddysgirl #transplant  #kidney #donate #life #Nebraska #researchfunding
 #transplant #kidney #livingdonor #daddy #love #believe #family #littlegiants

Thursday, December 20, 2018

SIOD at a Glimpse

Every 21 days an IV start and labs for her IVIG treatment! 😐She adjusts to this routine, and some IV starts go better than others, but it still is a challenge every time because who enjoys getting poked and prodded all the time year after year?! πŸ’‰
Emily has a rare genetic life limiting dwarfism disease called Schimke Immuno- osseous Dysplasia (SIOD) and these treatments are one of many things that help keep her with us. Those suffering from immunodeficiency diseases (low T cell function)-as with #SIOD - having poor IgG levels can benefit from IVIg - a blood product derived from blood donors. Her infusions last 3 hours generally and are monitored by a home health nurse as any type of blood transfusion can cause the body to react.😷 We appreciate our friends of which some have been with us nearly 10 years who help to make each time as smooth as possible.