Mar 5, 2012

I might have jumped the gun... a little -Mia's rejection

When we went back yesterday, (Thursday) Dr. Everitt decided that Mia was indeed in a MILD rejection.  I am devistated, but at least it is mild... right?  With her pressures being high, coupled with the appearance of her veins... they decided to do a  course of steroids.  I am still not super aware of all the different forms of rejection because rejection presents at times really "patchy," but this form of rejection is called "cellular rejection."  Everything I read online seems like a completely different language, and this language is one that I am still opting not to be an expert on.  I have had some people ask me questions and I just don't know the answers.

I do know that the her angel heart is doing great! The coronary arteries look great! She has an insane amount of energy, and she sure makes a mild case of rejection seem like a walk in the park.  We go back next week, and I will take notes this time so I can explain better.  I did get a handful of comments about how happy she is. She dances down the hallway of the hospital often singing her, Rhymes.
 It's adorable.



In one day we went from this many meds...


To this many.


SHEESH!


Mia has so much personality!  I snapped this picture with my phone  after she received her second, "shining star" teddy bear for that week.   She he was thrilled to get another one.  When the nurse took her to the prize station her face immediately lit up and she procliamed, "this one! this one!"  "Thaaaank you!"  The bear sings, "Honey YOU... are my shining star...don't you go awayyyyy. Oh baby YOU, are my shining star.. don't you go awayyyyy."
 Mia, after having the bear for a few days can now sing the song perfectly.  The bear also includes a star registry... how cute it that?  I'm glad she has two because Sammy has his heart set on one of these bears belonging to himself.


We have to be extra careful and make sure all the lids are on very tightly.  This little guy feels like he is missing out on something since he sees sissy getting what must be a treat and he gets none.  He will climb up and announce, "Meds!" and get to work on preparations for administering them.  He knows what he is doing too...


No we don't let Sam draw up Mia's meds... we just let him hand us the bottles as he yells, "OPNIT!!"
Sammers always gets his dose of liquid vitamins and floride at the same time Mia gets her meds... ya know... to be fair ;-)



Despite being in rejection, things haven't changed too much around here.  We will keep Mia home from church and school while she is on steroids... and be extra vigilant about keeping out the germs.  I came home from church to my little Mia diaper Monster.  John boy covered her in diapers while I was out.  John does a good job of making me laugh when he knows I am a peqeno frazzled.


Mia wanted to keep it on.  We let her run around like this for longer than I care to admit.  I think she loved all of the attention and being the little clown that she is stayed in character. 


Jense came down with a little cough so he got to be the first to wear a mask. 
I wish I had occasionally put a mask on Mia so she would be used to it.  She wants nothing to do with them... at all.  I might have to get some character masks or something.... hmmm.


We are bummed about the news, but think after this little steroid treatment bump she will back to her normal routine.  She did have to miss her first ever "drop off" birthday party this weekend... which was a little sad, but she doesn't know any better.  

There will be plenty of birthday parties to come... of that we can be sure!

5 comments:

jayna said...

Oh man. No es bueno. But. BUT. She is still so happy and will be healthy!!

I snort/peed a little about the diaper. JohnBoy can come babysit my kids anytime...

Melynda said...

=( being in rejection is no fun! Mariska got her new heart when she was 2 and half. This summer it will have been 2 years ago. We had a mild rejection last summer. Its a blessing to be treated at home but its still hard keeping all the germs away! Praying her body stops rejecting her heart!

Beth said...

Bummer dude! She is so darling! Love the diaper helmet.

Beth said...

Bummer dude! She is so darling! Love the diaper helmet.

Shila said...

poop. Good to see the smiles through the trials though.