I just got back home from flying to Michigan for a doctor appt with P. We went to see a neurosurgeon who is supposed to be amazing and after getting so many opinions/ideas/diagnosis the past year she immediately said looking at her MRI that she is re-tethered to her lipoma and scar tissue. It's hard to accept she is going to need another spinal surgery and we are doing it so far from home (omg $$$$) but her technique will be proactive in trying to prevent this again and that will be worth it in the end.
P is not a happy camper and can be expected, surgery is scheduled July 18th. =\
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned
DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3