Monday, September 30, 2013

Small Miracles


Micro Day is here again!  Thank you to my friend, Jill, for this beautiful graphic created for Anabelle and her friends.  We have a bunch of new micro friends to introduce you to this year, and the exciting thing is that all of these kids are new friends we found living right here in the Philadelphia area.  Our community is growing tighter, families who live with this disorder are finding each other and supporting each other, and our friends and families are helping us spread the word every year!

Anabelle Rose is holding steady at a head circumference of 15 3/4", but the curls are fuller and boingier than ever!


Our first new friend to introduce you to is Will.  Can you believe we found Will living right here in our own town??  AND he has a sister who is also in first grade, like Elyse!  The micro world gets smaller every year.


Will is a big helper to his mama.  He loves cleaning up the dishes...and everything else.  Dirty dishes, dog food bowl, toys, keys, everything goes straight into the sink!  Will is a quick crawler and gets super mad when he isn't allowed to climb the steps.  Will is mostly tube fed, but does eat some orally, and loves to drink pickle juice!  His exciting new accomplishment is that he now opens his hand to pet his kitty, instead of pounding her back with a closed fist.  This is awesome dexterity!  Will is also making great progress finally keeping some weight on (difficulty maintaining weight is a common problem among micro kiddos).  Yay Will!


Miss Avery is total personality!  She is three, just like Anabelle, and recently started attending school.


You should see Avery get around in her gait trainer!  Girl can MOVE!  She loves classical music, just like Anabelle, but you can also find her rockin' out to reggae or Beastie Boys.  She loves bath time and swinging and hates having her head touched (so much for cute hairdos!).  Avery and Anabelle have very similar wardrobes, as their daddies are both Star Wars fanatics (there's a lot of Yoda).


Sweet Ella and her family just moved to a new house even closer to us.  She has a big sister the same age as Elyse, and the two of them were like peas and carrots when we got them together :)


Miss Ella is very chatty.  She loves Elmo and can say his name.  She mimics her grandmother's laugh and calls her "Haha".  She loves monkeys, owls, music and kisses.  When Ella was little, she had very bad Infantile Spasms (a form of seizures), and was medicated for them.  It was amazing the transformation that occurred when the spasms stopped and the drugs were weaned.  All of a sudden, all this personality came out!!  One of the terrible things about this life is the terrible amount of serious medications we need to keep our kids on to keep them healthy.  They can make them drowsy or doped, and we never know how much they are holding them back until we can wean them off.  Ella's mommy runs a foundation called "Sockies for Sick Kiddies" (https://www.facebook.com/SockiesForSickies), in which she sends sock monkeys to kids who are sick or have a disorder.  Please check them out and see how you can help!


Julia (aka Sweet Bird), is such a little joy!  Sweet little face with the signature Cephaly Cheeks and her adorable pigtails!


Julia has had an exciting year.  She started a new school and her parents are thrilled with the progress she has been making.  She has been getting around better and better in her walker, and has started reaching out for toys (even if her aim is sometimes a little off).  Like with my girls, she and her brother Max are definite soul mates.  She responds to him better than to anyone else.  He has even been recording his voice for use in her therapies.  When she hears Brother, she smiles and giggles.  She's apparently a Yankees fan (we'll have to forgive her, she was born in New York), and always tries to swipe the Yankees cap off her brother's head.  She's a Renaissance girl, being partial to both princesses and light sabers.  She loves swinging and kisses.  Just like Anabelle, she is ALWAYS HAPPY!  What an amazing blessing to her family.

Julia's mommy says one of the most important things that happened for them this year was the Cephaly family meet-up we held in May in conjunction with Anabelle's Birthday Bash.  Until then, they had had very little contact with other micro families.  We are so happy to have them as a part of our Cephaly family now.  And a big thank you to Julia's daddy, who is the headmaster at Malvern Prep School.  They donated their gym space for our get-together, and it was wonderful (head's up, local friends: we're starting to plan a holiday party at the same location!  Details soon!)



And now it is time for the updates.  One very exciting and one terrible.  For those of you here with us in 2011, that day's blog featured a young man named Cameron (http://www.anabellerose.blogspot.com/2011/09/small-is-beautiful.html).


Well, in a new development, Cam started seeing a new doctor who diagnosed him with mitochondrial disorder.  This doctor believes that all kids with microcephaly also suffer from mito.  He started treating him with the drug l-methionine, and an amazing thing happened.  Not only did they see an abatement in his gastric issues, but Cameron's HEAD STARTED TO GROW.  As of today, he is NO LONGER CLASSIFIED AS MICROCEPHALIC.  This is mind-blowing.  This treatment is still in its very early stages, and so far, his is the only doctor working with the micro-mito connection theory, but we will be keeping a very close eye on this...

And finally, also in 2011, I introduced you to Anabelle's cephaly sister, Parker.  We call them twins, born 6 weeks apart, very similar in appearance, abilities and personality.  This is Parker and her mommy last Micro Day:



Last Micro Day was Parker's last Micro Day here on Earth with us.  We lost her 20 days later.  The heart-breaking fact still remains that for many children born with microcephaly, especially if it is combined with other diagnoses, it is a death sentence.  It has been a long eleven months since Parker left us, and the hole is still there.  I have been blessed to meet with Megan, not once, but TWICE in recent months, despite the 1500 miles between our homes, and while it was like spending time with an old friend, there was a palpable hole.  Parker's mommy started The Parker Lee Project (https://www.facebook.com/pages/The-Parker-Lee-Project/562760520420671) in her memory, which helps get much needed medical supplies to families who cannot get things they need paid for by insurance.  If you have extra medical supplies or are in need of any, please go check them out.

Anabelle loved meeting with Parker's mommy and daddy, but it was so clear that someone was missing.

For those of you who don't understand why I make such a huge deal out of every Microcephaly Awareness Day, this is it.  So many of our kids have such a short time to make their mark on the world.  So far, since I have been sharing Anabelle's friends on this blog for Micro Day, we have lost two of the kids I introduced you to.  And those are only from this small selection.  I know of dozens more.  It is so important to me for you all to understand how real these kids are, how important they are to their families and friends and what amazing little heroes microcephaly has turned them into.  

Thank you for being here again this year.

1 comment:

  1. Thank you Kate for representing the community so well in your posts. You guys are an inspiration.

    ReplyDelete