I know that I have been writing a lot about my daughter, Kylie who is currently dealing with Maternal Phenlketonuria (PKU). What you may not know is that her 14 year old brother, Isaac also has the metabolic disorder.
Every morning since Kylie and Isaac were born, I have either dissolved, crushed, or mixed a cocktail of medicine and formula that would become their soul source of nutrition for the day.
At least once per month, I spend an average of 2 hours ordering, applying for assistance, and coordination of their care. Blessed to have been insured throughout the years, without insurance, it would cost an average $1,000 per month for each of them to have the medicine that they need to live. Now I know that sounds ridiculous, and don't even get me started on the outrageous business of pharmaceutical companies! It is a rare disorder that requires rare medication and rare is expensive, the end!
Even though it is a challenge to get everything coordinated each month, I have kept the attitude that I just do what I need to do to keep my kids healthy.
I always strive to teach & encourage them both to take responsibility of their own care. Drinking their formula around friends or school hasn't always been popular. Sticking to the diet will never be popular for them. The side effects of unstable levels will NEVER be popular. I worry often that I have done almost too much for them. The simple fact is, Isaac's blood levels are higher when he mixes his own formula and they are lower when I do it for him. I suppose I will continue to do what I need to do in order to keep them healthy, even if that means forever!
