The McEnaney Family

Parker Q was born on 12/17/2021, a rainbow baby that we had prayed years for. After an easy and uneventful pregnancy and birth, we were discharged from the hospital and headed home. We returned back to the ER, frantic, 4 hours later with concerns about breathing issues. Over the next 6 weeks we would be discharged and readmitted to the NICU twice, transferred to another hospital and Parker would battle through NEC and multiple seizures. We were discharged from the NICU at the end of January 2022. The days have continued to get harder and more complicated for our Sweet P. She has continued to add to her list of diagnosis, including global developmental delays, Infantile Spasms, Lennox Gastaut Syndrome, intractable without status Epilepticus and a possible genetic disorder called GLUT1. She continues to attend multiple Dr appointment a week, meeting with 7-8 specialty teams in addition to OT and PT. We recently traveled from MN to NYC to meet with a leading doctor in GLUT1 to confirm her diagnosis. She is also on the Ketogenic Diet which has been challenging to say the least. I (Mom) has taken a 12 week leave from my job to manage through her increasing appointments, therapies and paperwork needed to get the ball rolling with additional support for our family. Sadly, this time off is not paid and many of Parkers needs continue to be more and more expensive. We head to CO for a 3 week intensive during my time off and while are thrilled we were accepted and able to do this, the continuous financial stressors we are under are mounting.