parenting a child with a genetic condition

While this story is focused on raising a child with EDS as he enters into his teenage years, the caregiving dilemmas are similar across all rare diseases.
Teetering on the Adolescent Balance Beam With Rare Disease

#Caregiving #ParentingAChildWithAGeneticCondition #EhlersDanlosSyndrome #Parenting

Tomorrow I will take my medically fragile 2 year old to his orthopedic appointment where his hips, spine, and adducted thumbs are followed. This doctor is amazing and not at all an alarmist. I do love that about him. But. Big BUT. At our most recent checkup I spoke with my son’s general pediatrician about why the ortho doc is not concerned that his spine is curved, not concerned that this hips are out. Why not? She said many times specialists are not concerned because they don’t see the hope of walking or having typical function. So tomorrow is the day. Tomorrow I will walk into that doctor’s office and tell him what my child needs. I will tell him it is time to be alarmed. Our physical therapist, occupational therapist, and general practitioner see hope and I need him to put on his rosy glasses and see it too. Let’s talk about a solution doc. Let’s talk about results. #Advocacy #L1Syndrome #RareDisease #ParentingAChildWithAGeneticCondition