The Big Day is Near. Tomorrow. July 8, 2021. Emily will turn 18. A magnificent day filled with so many mixed emotions. My mind is swirling with so much that I will try to get it out so that it makes some sort of sense.
Firstly, let's chat about the turn of 18 and what that means for us with Emily since our last blog on "Navigating Transitions". We have met with and signed a gazillion forms with the Adult Aged and Disabled Waiver/Medicaid case manager from League of Human Dignity. Thus far this person and a few others with LOHD have been very informative and nice as well as accomodating. Today we met again to sign a few more papers that will go into play tomorrow. Emily will actually have a brief overlap of care this month as her birthday falls in a state of limbo for the month.
Next, today is our last day with our home health services nurse that we have had for the past 7 years. We have celebrated with ice cream, hugs, and the knowing that we will remain friends. As we tell Emily, now we can see her like our other HHN Emily had for 7 years before that- for FUN! And we do! Thank goodness Children's keeps kiddos til they are 21 and we can stay there for much of Emily's needs.
Our respite provider- Grandma- will remain the same until Emily is 19 as well, but now instead of respite it is called CHORE! I find that name hilarious. I mean really- CHORE? Come on DHHS- you couldn't think of more appropriate, less offensive name?
All of Emily's UNMC doc specialists are beginning to be transitioned to adult care by the age of 19. This should be good. New set of eyes can be good and the opportunity to train and educate more about SIOD and yet, well, I will leave it at that. Read between the lines.
As the photo states by CHAD, Emily continues to defy her SIOD disease and inspire many through her journey. We are grateful and blessed because of this. As my momma heart cries tears of joy and has some tears of agony mixed between due to all we have lived and know of this disease, I still BELIEVE in a future for our Emily and for our Little Giants Foundation to help find a cure and prolong the lives of these children with SIOD.
So join us in celebrating Emily's miraculous BIRTH day by:
1. Donating/ pledging monthly what you can to https://thelittlegiantsfoundation.org/donate-index-impact
We are so close to one of our 50K project research goals! Can you help get us over the top?
2. Donating blood: Little Giants Foundation- In Gretna Blood Drive
07/10/202109:00 AM - 2:00 PM
Sponsor code: LGF
Little Giants Foundation- Gretna
919 Village Square
Gretna, NE 68028
3. Register for our 8th Annual Farm Run ( in person or virtual/hybrid) at ( price increase tomorrow) :
https://ultrasignup.com/register.aspx?did=85110
