She was born with her full liver and small intestines in her umbilical cord. She also had a PDA and multiple VSDs ( holes like Swiss cheese) in her heart. She also was diagnosed with pulmonary hypoplasia, pulmonary hypertension, severe GERD ( reflux), a hiatal hernia ( stomach peaking through her diaphragm) and FTT ( failure to thrive)... She also has oral aversion and gets all of her daily food/ nutrition through an ng or right now an nj tube....
Carlijn is currently in the hospital for the 7th time in 6 weeks because she was not tolerating her feedings and puking. We just found out that she has a rare food allergy. She is allergic to milk, soy, egg white, and peanuts, wheat and a few others. Because of this she needs to be put on a special elemental formula that is amino acid based called Neocate Jr. It is hypoallergenic and safe for her. It will also give her complete daily nutrition. Unfortunately blue cross blue shield of Illinois says that despite all of her diagnosis they can't give us any coverage for her formula (which is quite expensive)
because the policy that was chosen by my husbands work excludes coverage for formula. But they will cover her feeding tubes and her multiple hospitalizations because of being sick and under weight smh... You ask why don't we get WIC or MEDICAID? Because my husband works and makes what they call " too much" money and we only have three kids. Because of this I can't qualify for wic, Carlijn doesn't qualify for SSI or disability etc. if any of that criteria changes then we would find we have %100 coverage for formula through WIC or Medicaid because she is tube fed. They don't factor in the fact that my husband is also medically complicated having had a heart transplant 19 years ago with expensive meds and multiple hospitalizations each year... We also have two other wonderful children as well.
We never ask for anything and are two of the must humble people you will ever meet. Now our family is asking for help. Please consider donating here or by purchasing a case of Neocate Jr unflavored formula for my sweet peanut Carlijn Grae... Each case of four cans last one week and costs $155. One can is $45. Or donate here towards future cans. Neocate jr unflavored formula can be purchase at amazon.com. Her public Amazon wish list is under Neocate for CarlijnB, or go to neocate.com.... $8800 will buy us a years worth of formula and pay all the fees assoc with this gofundme account.
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