Today is Maya’s liver-versary! It is a day of
celebration and remembrance. We celebrate it every year, and every year I feel
even more amazed and grateful that after everything she’s been through
she’s still here. I still can't believe it's been five years. She’s in kindergarten now and is growing up so fast. Her most
recent health issues and hospitalizations have been tough, and there are more
procedures planned for the near future. Maya takes much of what she endures in
stride, and even manages to stay semi-still twice a day when I flush the port
to her bile drain. (For anyone who knows Maya, that whole staying still concept
is just something that she doesn’t subscribe to.) She is an active participant
in her own care, and getting her blood taken and taking medications are all
things that are normal to her. She’s never known anything different.
Maya has been on numerous medications from the time she was
two months old and diagnosed with biliary atresia. She was only a year old when
she got her “new” liver. Directly following her transplant she was on sixteen different medicines. Now she is only on three. One of the most important ones is her
anti-rejection med, Prograf. Unlike her other medications, which are liquids,
Prograf is a small but mighty capsule. It is what keeps her body from rejecting
the liver she has been gifted. It has to be given on time, exactly 12 hours
apart EVERY DAY. In order to administer it to her, the capsule has to be broken
open and the powder has to be mixed with a little bit of water, then given to
her via an oral syringe. For five years, I have made sure she has gotten every
dose. I have trained all babysitters and family members on how to give it to
her. I have been doing it for so long that I could probably do it in my sleep.
I have, in recent months, talked to her about taking the
pill and swallowing it like a big girl. She seemed eager to do it, but for some
reason, I held off. After all, she’s only 6 years old. What if she’s too young?
What if it gets stuck in her throat and she never wants to try again? What if….
What if she can take the medicine on her own and I realize
that she IS a big girl…that she IS growing up? Hm...
During a recent hospital stay, she decided she didn’t want the medicine mixed “baby style” anymore; she could
handle it on her own. This recent development makes me both happy and sad.
Happy because it signifies not only her independence, and to be honest, it
makes my life a bit easier. Sad because it signifies her independence, and I’m
not sure I’m ready for that. So now when
it’s Prograf time, I simply hand her the pill and a glass of water. And when
she’s done swallowing it, she opens her mouth and sticks out her tongue and
tells me the pill is in her belly. Then she gives me a huge smile, belches
loudly, and walks away with a skip in her step.
Happy Five Year Liver-versary to my sweet (and sassy) little girl, who's growing up so quickly. I
love you.
