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May 07, 2008

This is 'cool'!.........

I was searching the internet, trying to find cooling vests for Porter (until I can learn to sew) and everything I found was too heavy, too thick and too large until....I came across this vest:

Cooling_vests

Even though these ones were originally made (by one woman) for babies with scoleosis and only for their backs, I loved the design and called Heather in Colorado immediately. Heather is sending Porter one vest with a second set of cool packs and asked me to try it out and see how it works for him and to call her back and work with her on revamping the design for children with HED.

These vests have pockets for cold packs, which enables these children to go outdoors during the summer, and can keep their backs cool for approximately 3 hrs.  Once the cold pack has thawed out, it is replaced with another frozen pack.  All our parents agree that these cooling vests are essential in providing relief to their child being treated for infantile scoliosis.

Infantile Scoliosis Outreach Program
C/O Cerebral Palsy of Colorado...You guys rock!!!!!

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Porter's Health

  • AUTISM
    -Porter was officially diagnosed with having Autism- 3/27/08. He is starting on a Gluten Free/Casein Free diet to help heal his gut, and Bio-Medical therapy, plus Speech Therapy, and many, many other 'therapies'.
  • HYPOHIDROTIC ECTODERMAL DYSPLASIA
    -This is one of Porter's diagnoses. Due to this condition, Porter can not sweat to cool his body and if overheated, could spike high fevers, vomit, dehydrate and seizure...and possibly die. Therefore, Porter always needs to be in an air condition/cooled environment. This makes him 'Medically Fragile'. Please help by donating to NFED.
  • IMMUNOGLOBULIN G DEFICIENCY (B-Cell)
    -Another one of Porter's diagnoses. He receives IVIg therapy once per month for the rest of his life...just to stay alive.
  • TOTAL PARENTERAL NUTRITION (TPN)
    -Porter had a Central Line inserted into his chest and recieves TPN nightly from 2 seperate pumps of TPN and Lipids, that his Father, James prepares nightly and puts into a small backpack that Porter wears to bed. This is to help build his immune system and help him grow. This has been our 'liquid gold'. Porter has not needed any hositalization since being on TPN.

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