August 2008

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Freezer Meals

43 Things

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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April 26, 2008

overactive in the park....

...okPark_3

This gorgeous early evening, we gave the kids just 30 minutes to play at Chesapeake City Park, because we knew that's about all Porter's non-sweating body could handle before he got heat exhaustion. Not like it was too hot outside...I mean, the temps had dropped to 77 degrees by the time we got to this wonderfully shady park, and really no big humidity, even had a nice gentle breeze here and there, so we figured Porter could possibly fare ok...well, unless he became overactive....

...uh, if you look up the word; 'overactive' in the dictionary...Porter's picture should be right there!

Afterwards, we had pizza with my folks and visited them for a bit...but the park was....well,

'What the Doctor had ordered'...Porter_in_play_3

Roll1_3Roll3_2

Roll4_3

And..yes, he did wind upneeding a cool pack for his chest, a cold drink and the high blast of air conditioning to cool down...a little scary, but we are managing him well now).

And…so now I’m actually considering SEWING...yes, I said sewing. Sewing these 'cool vests'....simple terry lined vests that zip up front, but have two velcro pockets in front and two in back to slide ice packs into...so, my little boy can wear it anytime he goes outside and we won't worry too much about him overheating and dehydrating so quickly.

I think I'll even call them…'Porter Pockets'.

Fun_2

Comments

Seems like Porter had a great time!
"Porter Pockets" are a great idea- love it!!

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