Just when you think you know what you know...

Took Lillian to the ped today because there was some granulation/inflammation around her gtube site.  Turns out, it's not that AT ALL.  It is, in fact, a staph infection.  Good times.  Hopefully, our prescription cream will work wonders and clear that all up.  We are also going back on a round of levoquin due to sinus problems.  She has battled this all winter and there seems to be no reprieve.  She is sleeping poorly due to all the drainage.  We are back up to using albuterol, nasal washes, and nasonex as well. She remains happy for the most part.  We had a very public and nasty vomit episode thanks to the gobs of mucous she is swallowing...so not pleasant for her.  Just kept coming like a volcanoe.  I happen to have left my diaper bag in the car...and when I did get it, found I had no diapers or burp rags in said bag....sheesh, when will a Mom learn??  She is almost back up to her therapy routine, but someone--ahem-- who is not back in the habit of our times, forgot Thursday so we missed PT.  WHOOPS. 

Just a little quickie update on Miss Lillian.

This morning

I woke up pretty early.  I heard you coughing from your room, but knew you were still asleep.  I checked on you and stayed in my room so I would hear you when you woke.  Several hours passed and I thought you should be waking up anytime.  Then it hit me.  I was almost afraid to look.  There are times (few and far between, but times nonetheless) that I am gripped in the fear that I will find you not breathing in the mornings.  Particularly when you sleep so long.  It takes me but a few minutes to shake it off and tell myself how ridiculous I am.  But really, your life has taught me better than anyone else, how quickly life can change.  In a moment you are living life and the next you could be turned upside down, in joy or sorrow.  I don't experience these emotions with just you. It hits me at times with your sisters or even Daddy.  I think, in some way, I'm just trying to be prepared for something bad to happen.  Isn't that awful?   I look back over the last five years and try to gauge if you have gotten worse or getting better.  It's strange.  In some ways yes, in some ways no.  You don't seem to have the lung infections that you used to.  You are, however, chronically ill in other ways.  Constant ear infections, chronic sinus disease...and this last year has just been hard in general for you and sickness. You have not had any reprieve from much of anything.  I love your strength.  You just keep going.  You have to be really down to let it get to you.  Lord, I long for these days to be fewer and fewer.  I love you my girl.  Thank you for the light you bring to my heart. 

Things I love about YOU!

1.  Your hair.  It's getting so long.  You are looking like such a big girl now.
2.  The way you carry around your bags of "littles" (bunch of little toys,as I like to call them)
3.  Your resilience.  You never stop.  Even when you're sick you handle it so much better than me.
4.   Your smile.  You always have a smile for me and almost anyone else.
5.   Your loving heart.  You love everyone.  It's impossible to be with you and not feel love.
6.   Your decisiveness.  You stick your finger in your mouth and make a gagging sound when you don't like something.
7.    Your singing.  Daddy calls you his little songbird, because now you "sing" all the time.
8.   Your run.  I am filled with joy when you run.
9.  Your belly laugh.  Who can resist belly laughs?
10.  Your helpful nature.  You like to do chores and put away groceries.  Even if they are too big for you to handle.