Riley has struggled with eating, sensory issues and developmental delays since she was a baby. At 9 month’s old Riley was forced to get a feeding tube due to her not hitting her milestones as well as her weight only being 13lbs. Because of the feeding tube, her sensory issues and other unknown reasons, her oral aversion has gotten so much worse and she barely takes anything orally, but because of the feeding tube she has gained weight.
Doctors have done countless tests including a complete GI Series, Endoscopy’s, Milk Scans, Allergy testing, various different tests for metabolic issues, a spinal lumber puncture, several genetic tests, MRI's of her brain and still after everything, we have no formal diagnosis, other than a severe feeding disorder, a sensory disorder, globally developmentally delayed and a possible genetic abnormalcy. At this point they have done an MRI of her brain, EEK, blood work countless times, a Lumbar Puncture- Spinal Tap, and everything comes back as nothing is wrong.
Riley has done several different feeding therapy programs and long term we saw little to no success in these programs. After the many facilities visited in NJ, NY and PA, we started to look elsewhere which brought us to Children’s Hospital of Wisconsin. In Wisconsin, they did another Endoscopy and an Upper GI Series and they may have found something in her stomach that could be causing her some distress, they did a procedure that will temporarily help her but long term she may have to get the permanent surgery done out in Wisconsin. We also visited with the feeding clinic out there and they have a different approach than any other facility we have been to locally, so we will most likely need to return there for an inpatient intensive feeding program to get her to eat orally just purees. Then after that in time, we will need to go to Wisconsin again or another intensive feeding program.
Through many hours of therapy for speech, Riley is still non-verbal. We have tried many systems like the pex system to get her to communicate, but do not think she can articulate how to use it the way its intended. So, we are working on other forms of communication, but still have not seen any big successes.
Riley truly is our medical mystery child, no one can figure out what is causing her all of her issues, and she requires a great deal of care, therapy and doctors to help her to continue to progress and learn. She is one of the sweetest loving and affectionate children you will ever meet. Despite the countless times this child has gotten blood work, been put under, or been to the countless feeding evaluations and therapist for evaluations, and doctors’ appointments in her short life, Riley is still extremely happy and certainly doesn’t let her spirit down.
- T Robin Visconi
- Mark & Grace Ziolkowski
- David Weintraub4
- Susan Palmeri
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