Updated posted by Ginger Marlowe 20 months ago
Interview with KPHO - Channel 5 News
Created by Ginger Marlowe on June 18, 2012
Alexander asks one question everyday...
"Mommy, Can I go outside and play?"
"No baby, it's too hot today, let's read a book together..." I reply
...another day I crush his dreams....
Alexander was born with Spina Bifida, Hydrocephalus and Chiari II Malformation. He was born with part of his spine missing, it cannot be regenerated, at least, not yet, there is always hope. Hydro is water on the brain, Alexander has a shunt that drains that to his belly and it is absorbed naturally. Chairi II Malformation is pediatric term for Arnold Chiari, His Cerebellum sits lower blocking spinal fluid flow. He has had a Chiari Decompression Surgery. So far, Alexander has had 14 surgeries, he's only 8. Among this he has other complications. Alexander is catheterized through a *stoma* in his belly. He cannot urinate on his own, for bowels he has an *ACE* but out bathroom is too small to allow his potty chair to fit over the toilet so he has to wear pull-ups he is outgrowing, we have a tiny stand in shower only. Alexander has latex allergies, we have to be careful, we carry an Epi-Pen in case of emergencies. No balloons, bananas, kiwi, other plastics, it takes a sharp eye to see it, it's kind of a mommy thing.
Alexander cannot walk, never has, he knows no different. He really at this part of his life maybe cause I treat him no different that he's special he just knows he's special to me. I think he is starting to understand a bit though. In case you have not guessed, I am a single mom. Believe me, it gets very trying at times, not cause of Alexander, he's the gift, it's the challenges of getting him what he needs. This is where I need your help.
Part of Alexander's special needs is he is heat intolerant, Heat can kill him, because his body does not trigger his sweat glands he overheats easily. To the point..he can literally die. He gets pink, then red quickly, a faint sweat, then lethargic, limp, he throws up, weak, disoriented then passes out, I freaked the first time, no clue, I didn't even know, now I do and here we live in Phoenix, AZ? Wow, I mean, can it get any hotter? It was 115 today. They put out extreme heat alerts for just everyday people. For Alexander it's a death sentence.
We seriously need to move, I have done research of climates on the best hospitals, seems northerner California would be our best location, 84 degrees at hottest, 43 at lowest so no snow, good for Alexander in a wheelchair!... anyway I need to get my baby out of this horrible heat and in a place where the hospitals understand his special needs and the climate is good for Alexander.
I mean, if your 8 years old don't you want to go outside and play? He does. He asks why he can't. I have to be honest. Not something I want to come back at me for lying. It's alot to raise him alone as it is. I just want whats best for my son.
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