I've got my EYE on you

 

While in Iowa City the tail end of last week for Emily's follow up from her eye surgery she spotted a deer in the parking lot outside of the Ronald McDonald House we stay at!

The follow up overall went well.  The good news is that the retina is still attached from this latest surgery.  That means no surgery this week.  Her left eye is damaged though and this is why she is still not able to see out of it.  We will be seeing her regular ophthalmologist in November to see if a prescription of glasses might help improve this or not.  In addition we will return in a few months to Iowa City to check on both eyes as the same pigmentation scarring is in both eyes.  For now we are all ( docs and us) chalking it up to her SIOD as we need to study further, but is the only sensible reason as of now.  Until later, Emily is to enjoy being a Senior and the holiday season ahead. 

Soon she has a myriad of doc appointments from head to toe, which is typical this time of year for her.  She is also getting her Pfizer booster vaccine Friday and is happy to do so.  We all have been flu vaccinated now as well.  Holding out for Taylor-Jo (she is 10) to be able to get her vaccine very soon.

OCTOBER OCCASIONS

 OCTOBER is flying by already.  So many occasions have been happening and keeping us on our toes.  

Not only is October Breast Cancer Awareness Month ( check those tatas all) it is also DWARFISM awareness month.  Emily has SED (spondyloepiphyseal) type of dwarfism and a rare form of that within her SIOD disease.

We had a great social night at our local Piezon's Pizzeria and were the #WECARE organization on Wednesday the 6th.

Our 8th Annual Farm Run & Festival took place the 9th and 10th and we had gorgeous weather.  We are so appreciative for our volunteers, supporters, sponsors, donors and event attendees.  I am excited to share photos that my talented ol' high school friend took for us when she gets them done!  We raised over $6,000 for #SIOD research!  That is exciting.

We also closed out our 50K cite-sequencing project with Stanford and are ready to work towards then next research project.  More to come on that in the future.  Together We Can Do Something Extraordinary!

Today Emily is getting her every 3 week IVIG infusion treatment.  Tomorrow- Iowa City bound for the one month follow up check up and imaging of her eye surgery.  She is not feeling very hopeful that this surgery took.  We are trying to stay optimistic for her, yet we just don't know.  Emily has been very worried and anxious and wants to just know already.  She truly is a warrior princess.

Enjoy a few photos and along with your pink throw on some green to show your support of little people like Emily and others as well.