Wednesday, November 9, 2011

Staying Healthy as a Hippo

A lot of times, when people find out about Mailyna's condition, one of their first reactions is "but she looks so healthy; I'd never be able to tell..." and its absolutely true.  We have a medical team that we work closely with, that has become an extension of our family.  We're a part of the Pedi Hem/Onc Clinic at Kaiser in Oakland, CA.  They've literally been a part of my life since 2002. Because my family is a huge support system for me, we all pitch in & alternate who takes Mailyna in every 3 weeks.  Sometimes its my mom, or my dad, sometimes I'll take her, sometimes her pop will take her... but the amazing thing, the staff at Kaiser KNOWS my family.  They ask about her extracurricular activities, they ask about my parents, about Mailynas sister... they just know.  This has become on of the most valuable relationships we've built.

Mailyna is 9.  She has been going into the Oakland Pedi Hem/Onc for her transfusions since she was 6 months.  We actually started off going in every 5 weeks back then, but as she got older, the doctors realized it was more beneficial to have her come in every 3 weeks, giving her less blood, more frequently.  It kept her stronger, longer.  Looking back now, I have no idea how we were able to keep her hooked up for hours on end when she was a squirmy wormy baby wanting to crawl; or as a toddler when she learned how to walk & run.  When we bring my younger daughter along with us for transfusions, shes ALL OVER the place!! 

We have a routine.  Mailyna has her "transfusion bag" that she packs up & fills with whatever we need for the next day.  Movies, books, snacks, her blankey & baby (well, no baby now since shes almost outgrowing that stage).  In addition, inside is her Emla Cream to numb the port-site for easy, no tears access & her tegaderm tape.  That way its all together & ready to go for the day.  Also inside, are her beads.

Generally, her transfusions would take all day.  From 9am until about 4, we were there.  To minimize the time there, we take her in for blood draws up to 48 hours earlier, which is a peripheral stick in her arm, that isn't numbed with anything.  You can imagine how THAT goes!  But it cuts our time there down to about 5 hours instead.  Its a long day, but absolutely necessary.  The preventative & proactive measures we take keep Mailyna her healthy self.

Its an absolute blessing that we are in an area of the world that has such amazing care.  Many countries that are known for Beta Thal don't have the same advantages.  I just pray that the advancements in healthcare continue to grow & thrive, so that my little monkey will stay as healthy as a hippo!


1 comment:

  1. You're a great writer and it's a blessing that you are willing to share your time and experiences with everyone. Good on you, Mia!