vicious cycling.

ok the last post should've posted some time last week... 

update:  we have an appt at the MD clinic on Thursday!  da da da daaaaa!!!!  so check back Friday-ish to find out how that went...  I really have no idea what to expect.  but they did keep trying to make his appt like it was a follow up, I had to say quite a few times that it wasn't really a follow up because we have never seen any of the drs other than the nurse practitioner.  I think the dude was confused because we have been there twice but haven't seen any of the specialists...  so well see how it goes!

we have some other sad stuff going on at the moment...  but ill write about that later.  nothing to do with the kids though, so dont worry!  but dont you hate when youre in a down mood and all you want to do is listen to melancholy music which only further deepens your sadness?  ugh...  vicious cycles and their vicious cycling ways...

the word melancholy reminds of the movie 'melancholia'  super weird...  just fyi...

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.