Thursday, April 7, 2011

Top 15 List!

So, yes!  It has been quite some time since our last post.  It has definitely not been from a lack of blog worthy events. . . . actually quite the contrary.  Lots of blog worthy events and no time to keep up with them.  The last post was kind of Debbie Downer, but I'm happy to report this blog is full of many more ups, than downs.  So. . . . . drum roll please. . . . . Here is the top 15 events that happened since our last post!

1. The weather has really turned around and we've had so many fun days outside.  We are really starting to get some good use out of swing set (Thanks so much Beth)! 

2. Shopping continues to be me and Juliana's favorite pastime.  Here we are at Target trying on some very fashionable shades for the summer.  Why do they look like they might be from the Jersey Shore?
We are so desperately trying to turn our little home body Olivia into a shopper.  Slow baby steps.
3. Happy Fat Tuesday!  This is Becky, from Roger's work sporting her hand crafted Mardi Gras mask.  Their work is still fun and they had a mask making contest! Funny how Roger failed to send me a picture of him in his mask.  Oh well - thanks Becky for being such a good sport!
4. The Tobii has arrived!!!!!!  Yes, ladies and gentlemen, Juliana has received her very own eye gaze computer.  It is awesome!  We haven't really started to routinely use the device yet.  We have used it to play Candyland with Juliana and read some of her favorite books.  We are getting formally trained next week on how to program it and then we will start sending it to school and therapy.  I can't wait to see where this computer will take us!

5. Brooks' cleaned up pretty good!  Here we are at our friends' wedding.  Sadly, it was the first time we had gotten all dressed up and out on our own in awhile.  It was like a real "date night".  Really beautiful wedding and really fun night out!

6. Spring Break!!!!  Juliana and I decided to take a nice relaxed break.  Omi and Opi came into town and we did the usual lounge around, eat out every meal and of course you guessed it SHOPPING.  No major purchases, just lots of window shopping and a whole day at Ikea - LOVE THAT STORE!

Olivia, Roger and Aunt Teresa went to visit Pa-Paw in Tennessee.  Here is a picture of Olivia and Aunt Teresa right before boarding the plane.

And here she is with Pa-Paw and Cracker Barrel.  Boy did they make fast friends!
After dinner, the Tennessee family surprised Olivia with a birthday cake!  Yes, this would be the second time her birthday was celebrated.  Lucky girl!
Party Time!!!
Yummy green frosting!
Being that she was on vacation, she went a little crazy with the snacks.  Here she is eating an entire bag of popcorn!!!!!!!  Livi and I LOVE popcorn!!!!!
And here she is after the bag of popcorn sleeping with the new doll that Pa-paw and Bobbie gave her.  I'm sure you are dying to know the doll's name, right?  Well, it's Laverne.  Yes, that's right. Laverne.  Roger and Teresa went through about a million names when she finally settled on Laverne.  Hey, she's original.  And yes, she is still calling her Laverne although it sounds more like "Yaverne".
Here she is the next day with Cousin Rena!
And here she is with Uncle Dale.
And here she is headed back to Dallas.  I must admit, Juliana and I REALLY missed that girl.  The house is definitely quiet without her! 
7. Spirit Horse is open for business!  Another great thing about spring and better weather is that Spirit Horse is open again.  They close for the winter and the summer and are open in fall and spring.  Here she is with Daddy, Marisa and her instructor Meagan and of course Pocket her pony.  She has made so much progress since she started over a year ago and each time we go she gets even better!

8. We got a head start on Easter.  Since we are having the golf tournament on Easter weekend we, for once, thought ahead and decided to dye and fill our Easter Egg Shells (Cascarones!)  We took advantage while Omi was with us and died six 18 packs of egg shells.  Thank you Monteleone's for the donation of egg shells.

9. Livi celebrates her birthday for a 3rd time!  I guess since she did turn three it is befitting that she celebrated 3 times.  Most of the out of town family came in for the celebration and it was a great time.  Mommy, Daddy and Juju got her a sand and water table and to say she loved it would be an understatement.  She stayed out for more than 3 hours playing on that table.  Being the very responsible parents (NOT!) we failed to put on any sunscreen despite the fact that she was in direct sunlight.  Good thing she has my skin tone, thankfully we only ended up with just some rosy cheeks!

 This was her AMAZINGLY delicious cake that Nino Ray and Nina Julie got for her.  It was Chocolate Chip Cookie flavored cake and it rocked!
 Livi loved it too!
 Best Cake Ever!
 Mick & Ris!
 Present time!  She LOVED everything!
 Especially the dresses.  She is such a girl!
 Here is Juju hanging out with her college friend!  They are so cool!  She always has a great time with Micki:)
 I'm not sure what was so funny - they were telling secrets!
 These are the new shoes that Omi got for Juliana.  Unfortunately they didn't quite fit well with her AFO's so guess who inherited another pair of shoes?

10. Our new backyard residents - The Ducks!  These two little mallards decided to take a dip in our pool this year.  Livi and Juliana were so excited, so of course we got the bread out and fed them.  We were thinking they would stick around awhile, but I got too close and they flew off.  Oh well, it was cute while it lasted.

11. Breaking up is hard to do!  We had been seeing the same neurologist for about two years now.  Some things happened and unfortunately we came to the mutual decision that maybe we needed to find another neurologist.  I say unfortunately because we had been with this doctor for so long, she had been with Juliana through her regression, had seen her literally come alive once we got her seizures more under control, and the thought of starting over with someone just sounded exhausting to me.  But I'm happy to announce that we have found a new doctor!  He is very knowledgeable, he's had a few Rett patients, we seem to be on the right track and best of all Juliana liked him.  The amazing thing about this girl is her amazing charm.  And any time we meet someone new (like a new doctor, therapist etc) she pours on the charm so that you have no choice but to love her and want to help.  So here's to our new doctor - pray that he's with us for a long time!

12.  Juliana's ARD.  We had Juliana's ARD meeting (for you non-school people it's basically the meeting we have each year to make a plan of what will happen next year.  We meet with teachers, therapist, diagnosticians and parents to set goals, etc) and it went amazingly well.  Not that I had any doubts.  Her school is awesome for two major reasons: 1. They BELIEVE in my girl!  They know she is smart and capable and are all just working to find ways to reach her.  2. Wonderful staff that genuinely cares for her! We are truly blessed to have her there.  Clifton Early Childhood Staff - YOU ROCK!!!!!!!!!

13. Dress Up 2 Cure Day and Our Children's House!  Dress Up 2 Cure Day comes every April 1st in an effort to raise money and awareness for Rett Syndrome.  This year in addition to dressing crazy on that day, they also planted a Garden of Hope.  Thank you OCH!  You ROCK your Socks off!

Here is Juliana with her best friend D.  D. loves Juliana so much and is always around her.  I love to see her smiling like that!
14. Music Therapy - We are starting Music Therapy on Fridays for Juliana.  The great thing about it is that he comes to our house, so Liv will also get to participate a bit.  We are hoping to incorporate some music into her other therapy as well.  So, wish us luck - I think Juliana will love it - Livi too!
15. And last, but not least. . . . . . . Juliana is BACK!!!!!!!!  After several months of seizures and changing her meds, I really felt like we were taking steps back.  Juliana was always tired and just "not present".  Well we finally weaned her off two meds and I am thrilled that I am seeing my girl again.  Last night when I was putting on pajamas she was being so silly and her and I burst into a very contagious giggle.  As we were laughing I realized, it sounded extra sweet because I hadn't heard it in so long.  Her laughter is medicine for your soul.  So, right now I am feeling GREAT.  I feel like I have a renewed sense of hope.  Like we CAN do this and we WILL find a cure!  We have learned through this all, that there will always be ups and downs.  We just have to always remember that whenever we are down - things will always turn up again!


  1. YES!!! what a great post! number 15 totally got me! love you guys

  2. What wonderful times you all had. I love all the pictures. Sweet Memories for sure....