Six months ago today, we hopped in the FDNY Family transport van for the first time and headed into the city to face the unknown. Emotions were running wild, stomachs turning but we held on to hope and faith that both Dan and Philip would come through with flying colors. And boy has Philip emerged over the last six months as quite a colorful character.
Some things are becoming faded memories, like the waking every hour for itching. And watching videos like this one from the night before surgery, make me remember how marked his skin was and how his cheeks weren't always as big as they are now from the prednisone. He seems like such a baby in the video. He's really grown in leaps and bounds since surgery.
Some people have said, well now you can move on, forget it ever happened, and while he certainly acts like nothing ever happened and Dan feels like nothing ever happened, and I've wished and hoped it would be as easy as that for me, but these types of things stay with you. I live every day with the memory of all the discomfort he had to endure the last three years.
I mean, doctor's appointments are becoming less frequent, less hospital visits and procedures, less medication, and it seems like everything is back to normal and I revel in every minute of good health, but I will forever have a child that has a life threatening condition. I continue to pull Philip back to me and look in his eyes to see if I saw a little yellow or if it is just the color of the room thats making them look like that. Or is his belly looking a little bigger than usual? Why is he bruising so easily? Does he feel warm? Did I wash that piece of fruit good enough? Did I cook the chicken long enough? When are the next labs so I can have a little piece of mind...
I wish there was some sort of live feed of blood work in him so I can make sure all is going ok all the time.
And as much as I limit my internet searching, the last couple of months, I've read about a few children with Biliary Atresia passing away. It breaks my heart that there are still children passing away from this disease. Some just get too sick too fast before they can get a transplant, and others pass waiting for organs because unfortunately there aren't enough and they are not eligible for living donation.
But with all that said, we couldn't ask for a better outcome so far and we thank our lucky stars every day that he was given the chance to lead a normal life. Prayers continue to be answered everyday, and we continue to be thankful for each and every blessing.
Working on his car
School Picture
Blessings always 😇
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