Our
Resources
AJ has been fortunate to receive a variety of outreach programs over the past 7 months, including specialists, free childcare, and at-home nursing. I was also provided with information on support groups, to help me better cope with his diagnosis. These resources have been invaluable in our journey towards processing and healing.
AJ's care team
Pediatric Health Assoc. - AJ sees his pediatrician regularly for checkups and vaccinations.
Progressive Eye Care - Dr. Davis specializes in Neuro-Ophthalmology and manages his Coloboma very well.
Craniofacial & Plastic Surgeon - Dr. Parnell is an excellent reconstructive surgeon and did AJ's mandibular procedure.
Genetic Specialist - Dr. Barajas works outside of UIC and has followed AJ's chromosome disorder twice a year.
Feeding clinic - For proper care of his G-tube, he sees a Pediatric gastroenterologist, nutritionist, and speech pathologist.
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Parent resources
RARE TRISOMY PARENTS Facebook
RARE DISEASE INFORMATION webpage
DEALING WITH GRIEF webpage
At Home Reduce Stress Techniques That Work For Me
Meditation YouTube
Workout for letting off steam YouTube
Postpartum Challange YouTube
Yoga session YouTube
Journal
Financial Resources
DSCC- Division of specialized care for children arranges special medical care for children with approved disabilities.
Loaves & Fishes is a organization that helps to promote self-sufficiency. They assist with food and a one-time emergency distribution (ei. bills, rent, mortgage).
Sokana Collective assists throughout the pregnancy, birth, and postpartum care. They have a wide range of Doula's to choose from.
ZocDoc offers virtual care from real clinicians for those interested in receiving therapy.
Sheila Doula has assisted with birthing two of my children successfully. She hosts moms' luncheons, birthing education calls, and daily affirmations.
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