Zander's Medical Needs And Story
Zanders journey all started the day he was born , it has been non stop for my little guy since day one,
At birth we both nearly lost our lives ,with myself at a 30% chance and Zander a 60% chance of survival , I will never forget the day i was rushed into surgory so they could protect my baby boy!
He came out healthy lungs amazing and perfectly pink! he had his blood work done and after a few days Zander and I were sent on our way home to begin our journey !
3 days pass by and i get a phone call from the hospital asking if i could go back in imidatley because my son had tested positive for phenylkitonuria (PKU for short) and there has been false positives in the past, I than right away brougt Zander to the hospital , there they did bloodwork and soon after they broke the news to me that my son had PKU . that was the day i felt the roof closing in on me and my son. ( Those of you who do not know what PKU is its a genetic disorder that requires a very very very strick low protein diet if the diet is not followed properly it can cause seizures nurilogical damage and sometimes worst case death)
I stayed in Ottawa at CHEO for a week and a half they taught me what I needed to know to bring him home , How to calculate everything for zander to eat from making both his formulas one with the protein and one without , Than we were sent home for yet another journey that we would have for a lifetime.
As the months went by and he started eating baby food it was hard on the little guy , he could only eat certain baby foods (next to nothing) and have his formula there was no pigging out . Than he got into actual people food everything had to be weighed out to the gram and calculated if he didnt eat all of his meal i would have to figure out how much protein was in what he did eat.
Zanders having a very hard time struggling with knowing something is wrong but not understanding it because he is 3 and a half . He throws his food on the ground, he says yuuuk , he throws screaming fits when i say he cant eat a certain thing because of his disease, he just gets so mad and frutrated at everything and everyone The poor kid has been for bloodwork over 182 times since birth he goes for bloodwork every single Monday morning!
Some of Zanders food is covered by the pku society but those foods are powder that have to be molded into food , And with the age Zander is he sees it and just does not want to eat it , the foods that are not covered are pre made and look like actual ex. hotdogs and cookies , but these foods are very very pricey his ice cream is 37$ his pre made hot dogs are another 34$ his eggs just for one bag is 27$, The governtment does not give my son any money for his special diet , all he gets for disability is 50$ for transportation to and from his bloodwork , PKU is a rare condision and it has been a non stop fight from day 1 to get anything from the government
so now as a mother i am lending my hand out for anyone to just help my little guy feel a little more like us and not have him fight to eat because he hates his food. Im sitting here watching my son fall apart and fill with anger :(