We have an interesting series of challenges upon us. It is new. It is uncomfortable. And it will happen anyway. These obstacles are overall a good thing, however; they don't change the fact that they are unfamiliar territory for all of us as a family. My hope is that by sharing our path we can help others along the way as we have always tried to do.
So what are these new transitions? Transitions of care in so many areas of Emily's life due to the fact that she will be turning...18... this July! Such a blessing. We are beyond excited for her. She will turn 18, which is 9 years past her life expectancy. She will be a senior in high school. She will also need to transition from pediatric to adult care depending on the doctors and hospitals over these next few years. School and jobs will look different also. Every stage has its place and many kids turning of age have their own journeys as they go off to their lives after high school. For a special needs child with a rare genetic life limiting disease it looks even different. One of the first transitions is starting very soon where we need to say so long to our pediatric home health nurse of the past almost 8 years and do our cares at the hospital where she can still stay with the pediatrics until she is older and we find a good adult care home health agency. We are in no hurry for this transition, but it will come up first and quickly.
It is difficult to explain the bond one builds with our care team, especially when most have been in Emily's life anywhere from 5-14 years of her very extreme medical life. We are excited to still be able to see our friends, like Sansa at Children's to help Emily through her pokies and labs every three weeks still.
Here are a few resources for other parents making similar transitions for their special needs child:
From Nemours Children's hospital
Nebraska resources
We will share more as we go about this adventure of transitioning.-
