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Sponsor a Child in Need: Harry

FUND IT FORWARD received this letter from his parents:

Harry was born post premature at 36 weeks via c-section due to my pre eclampsia. Even from the very start, we knew we were in trouble. Harry has always had a hard time eating. First they told us it was reflux, and Harry spent his nights sleeping on my chest in our recliner to keep him comfortable. Then they said it was due to a tongue and lip tie, so those were corrected but still Harry was difficult to feed, refusing all solids in favor of nursing.

Harry also had issues with self care activities. Bath time was torture and he would cry so hard he would shut down. Getting dressed was agony and he pulled at his clothes constantly. Meal time was full of gagging, vomit, and crying. At bedtime, Harry cannot self-regulate long enough to stay asleep.

In January 2015, right before his first birthday, Harry had a modified barium swallow study to look at his epiglottis. The Speech Language Pathologist monitoring the study asked us when he had been diagnosed with SPD. We had no idea what she was talking about. We were referred out to Early Intervention, and in February of 2015, right after his first birthday, we were evaluated and received a diagnosis of Sensory Processing Disorder.

Harry has a hard time with regular toys. He becomes fixated on spinning parts, and everything goes in his mouth to be bitten. Harry self-regulates better when he does heavy work and gets a lot of deep pressure and vestibular input. However, as SPD is not a stand-alone diagnosis in the DSM, our insurance will not pay for therapy equipment for our home. While Harry receives Occupational and Speech Therapy through Early Intervention, it is only twice a month and he needs equipment at home.

Harry also has diagnoses of Growth Hormone Insufficiency, which he takes daily injections for, GERD, FTT, and severely delayed gastric emptying. Due to his GI and Endocrine issues, Harry is on a supplement drink called Neocate Splash and still nursed full time. He is doing better with solids thanks to ABA therapy but still has bad days.

At this point we have exhausted Occupational and ABA therapy and need to move to Sensory Integration Therapy, however with Harry being on Healthkeepers Plus, none of the sensory gyms in our area take his insurance and we can not afford it out of pocket.

We are requesting assistance in purchasing sensory equipment for our home so do the therapy at home for him.

Thank you for this opportunity.

June 2015


Would you like to help Harry?
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FUND IT FORWARD, P.O. Box 457, Wexford, PA 15090. Please include the child's name on your check.

 

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