I am so happy that so many of our blog readers have commented on the Fed-Ex post. I have just heard that there are people within Fed-Ex reading the blog! Our voices are being heard!
One question I've recently been asked is "Why does Anaya need the breastmilk?" The answer has two parts.
Anaya has infantile Krabbe Leukodystrophy, her symptoms onset at age 4 months. It is a demyelinating condition that has taken away the motor skills section of her brain. At 5 months she could no longer suck and swallow at the breast without choking. She was given a feeding tube to ensure her nutritional requirements were met. I got a very good breast pump and pumped my milk for her- but the stress of having found out my baby is expected to die, coupled with no longer having my babe nursing at the breast drasticly reduced my milk supply. We tried to supplement with formula. Her reaction was immediate. She would vomit, have diarrhea and was losing weight. We tried all types. She showed intolerance to all of them.
At this point a couple of friends of mine with babies offered to give some of their milk to Anaya. Then I wrote about it on the blog, then the newspaper wrote about it, then we had a strong response from the Nelson and area community. We were able to switch her back to a breast milk only diet. The response was amazing. Anaya's health stabilized and she started gaining weight.
I later spoke on the phone with an expert on Krabbe, Dr. Escolar in North Carolina. She told me that if Anaya was taking formula it would have a negative impact due to a conflict with her secretion management medicine, scopalimine. I was told that the combination of the two would result in constipation and possible impaction of the bowel. She said the reason Anaya is doing so well on the scopalimine is because of the properties of breastmilk that give it a laxative effect, while maintaining high nutrient absorbtion.
Since then we have struggled to find a consistant supply. I still pump every day - which I have been doing for 9 months, but my supply has never increased. It gradually fades away. Now I get only enough for 1 feeding per day. She needs 8.
Frozen milk donations of large quantity have been our saving grace. When our fresh donations supply falls short, we have a back up. But we use it everyday and when we get low the panic sinks in. Will we have enough? So far we have squeeked by - but with Moms from all over wanting to send us their frozen milk we would definately have enough - if only we could get it here.
Anaya is a special gift. Her presence has touched so many people. Her struggles and successess are lessons to us all. I'd like her to stay healthy, keep growing, and stay alive as long as she's able.
Please help us Fed Ex. It's a matter of life and health.