my sweet baby boy was diagnosed with microcephaly, hypotonia, and now duchenne muscular dystrophy. after searching for some support, i realized there werent many happy stories out there, so here i am to tell you the story of my happy happy baby.

Friday, April 19, 2013

three things.

i have tons to write about today, so get ready...  ha ha!

1.)  we had an absolutely fantastical weekend!  a whole gang of us (19 strong) headed down to virginia beach for the MDA walk.  we had friends and family...  all the way from Mississippi join in the fun to walk for my sweet sweet fennel seed.  we got an award for raising over $1000 (we raised over $5000), and we got an award for the first runner up for the most money raised, and we did it all in just 10 weeks!  Way to go 'fins to the left'!



it was almost overwhelming to have so many people travel to be with us for the weekend, im sure i did not do an adequate job of letting everyone know just how much it meant to me.  but, truly, i dont know if ive ever felt so much love.  having so many people come together to support my family, my baby, one of the best feelings...  with all of this love and support, i have no doubt that we will rock the eff outta some md.  and md better watch out...  it messed with the wrong family.

 
2.)  and some less awesome news.  we were supposed to have our first appt with the md clinic in may, and i got a call the other day that it was cancelled...  theyre currently trying to fill some vacant positions, so we are on the waiting list for june with no guarantees that well get in.  so im currently trying to get us in with Hopkins in Baltimore, ive been back and forth with them a few times, hopefully this will work.  im just really worried that we havent even been seen yet and were already getting shuffled around, and i hate that its starting out like this...  i dont want finny to be overlooked because no one really knows where were coming from or whats been done, or what weve been told.  ill just have to push buttons... 
 
3.)  and the last thing i want to talk about is the importance of being your childs best advocate.  after having a conversation with someone i love that is also going through some health issues with her son, i realized, not for the first time, that women are often brushed off as 'just being moms' when it comes to our concerns for our children.  now, im not saying i wasnt sometimes a crazy person when i first brought home my sweet little 5 pound 10 ounce baby ashey...  i was.  but, once you get in the swing of things, you know whats normal and whats not, and you also have this weird mothers instinct and you know when somethings wrong with your child.  so if you truly believe that something is just not right, then you have to do whatever you need to do to make sure you get the answers youre looking for.  people might think youre crazy, or being over protective, or even seeking attention, but who cares about them?  and if youre wrong about the issue, thank god!  but at least you cared enough to fight for your child.  end rant.


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