Monday, April 30, 2012

Still dancing...

Hi Everyone,

It’s me, Ella, and I’m back…  I took a little hiatus from writing because well I’ve kind of been going through a lot lately - a lot more than any adult could handle (at least that’s what I hear).   My daddy keeps saying he would be a crybaby if he had to go through what I have to and for some reason I believe him.  How is it that the little package that is me is stronger than some of you full grown folks?  I just don’t get it. 

Anyway, let me bring you up to speed on the past week.   I’m not gonna lie or sugar coat anything, the week had its ups and downs.  In terms of how I was feeling, Monday was good, Tuesday was bad, Wednesday was ok, and then Thursday came and it was horrible.   It was one of those days that gets worse as the day goes on and then seems like it will never end.   Mommy needed to let out a big ole cry that night and then she felt a little better.   She absolutely hates to see me in pain and uncomfortable so after a while it really gets to her - couple that with sleep deprivation and trust me it is not pretty.  Thank God she had Miss Pat here to help her this past week.  Though it was still tough with just the two of them I was so pleased to have someone caring for me that I know, trust, and love.  Thank you from the bottom of my heart for taking the time out of your life to be with me, help nurture me back to good health, and be there for both moral and physical support for my mommy.   

On the medical front, my jaw is moving out quite nicely.  My bottom jaw is not yet in alignment with my top jaw, but it is getting close.  Dr. M wants me to have a slight underbite because he knows that it won’t be long before I outgrow my new jaw, since for kids with Nager their jaws don’t typically grow on their own.   Everyone is already commenting how much bigger my smile is.  And they thought I couldn’t get any cuter??  Teehee.  The bad news is that my pin sites have gotten much worse.  Mommy got especially nervous when she saw raw tissue bulging out of my pin sites and green drainage.  Dr. M thinks I have something called fat necrosis and put me on Clindamyacin in case there is an infection brewing as well.  It is quite gross and I will spare you the details, but for those with a strong stomach feel free to inquire on your own.  Dr. M made sure to tell us that fat necrosis is something that is very uncommon.  Mommy immediately said, “Of course, it is...isn’t everything with Ella!!!”  What she doesn’t understand is I’m just trying to keep you all on your toes.  It’s not easy finding ways to be different…I work hard at this.    

It is way past my bed time so I better hit the crib, but before I sign off I want to tell you I had an amazing weekend with visitors from New York.  My nurse and friend, Caroline and her husband, Dave, came to see me.  Having them around made me happier than I’ve been in a long time and brought many smiles to my little face.  It made me feel at home again or rather it brought a small piece of home to me.  Charlotte may be nice to many, but to me I’m in a strange city, living in a strange house, and surrounded by strange people.  Coming out of major surgery and then being thrown into a foreign environment has not been easy on me.   Seeing familiar faces who love and adore me brought me so much comfort.  Thank you, thank you, thank you.  You guys made my week and mommy’s and daddy’s too :).   

P.S.  One item I can cross off my bucket list is making a whole group of strangers get up and dance.  We grabbed a bite to eat to celebrate Dave’s birthday last night.  Of course I made friends with another table and demanded they all get up and copy my dance moves.  Wouldn’t you know…it wasn’t long before I had them all doing the swim dance.  What suckers!  Lol.

Peace out y’all,
(What?…I’m in the South now)

I told you the South is growing on me...

 Love me some mashed potatoes

Still a toddler, still getting into trouble :P


  1. Hey Nina, Ella wrote a great blog! I'll keep you all in my prayers and remember to call or e-mail if there is anything I can do!! Monica xo

  2. WOOHOO! Ella.......I can see that new BIG smile you are sporting and I must say it is very becoming!! I continue to think of you every day and get my own BIG smile when I read your updates. Keep dancing Ella and soon you'll be dancing your way right back to NY.......YAY! Thanks for keeping us up-to-date. Monica

  3. Leave it Ella for not being typical..haha! Hang in there Mom. , Dad & Ella. Take advantage of the help and visits. My thoughts and prayers �� are with you. Love the blog and pictures...such a noticeable difference! Take Cheryl PS post when you can:)

  4. Ella, I am back in New York! I miss you. It was my pleasure to have been there with you this past week. You are an awesome, friendly, adorable little girl spreading sunshine wherever you go.It is truly amazing how you make everyone smile and get them to dance, and sIng. Do you remember when you even made me pick up little doggie Kate and rock him?! I hope you are feeling better and your good moments outnumber the not so good.. Please remind your mommy to eat and stay hydrated and take it one day at a time! Your parents are doing a terrific job taking care of you and you know how much they love you, but tell them it's ok to go out once in a while! Take care, see you soon, and keep shakin' it!!!
    Later Gator....I love you xo

  5. I am so happy to hear that Ella is continuing to amaze everyone! She is one strong little girl! Send you hugs and lots of prayers! Xoxo Kristen Pierson

  6. I loved to see this post and Ella's amazing smile! I especially enjoyed the picture of her enjoying some mashed potatoes :) I am so happy the jaw is progressing nicely, but so sorry about the discomfort, you are all in my thoughts everyday. Hoping each day brings more progress, less discomfort and closer to you being back home. Look forward to the posts and miss you all ox. Nicole z

  7. I Am so very happy to hear Ella is doing much better, you can see the change in her smile, amazing doctor. She is an absolute angel, bless little Ella, xoxo Liza