Woah...It's been 8 months, Really?

I can't believe it's been 8 months since I posted last!  Leyla has come a long way in the past few months! 

In September, we had the opportunity to visit the National Institute of Health for a research study that they are doing on Joubert Syndrome.  We were there for a week and met with several doctors that each did testing on Leyla and at the end of the week we were given all of the results as a baseline for future testing.  It was a long week, but we were thankful to have had the opportunity to be involved in the study. 

All of Leyla's testing came back relatively normal, she is short and chubby for her age (welcome to my life! :)) and she has some abnormalities on the surface of her liver but, other than that she looks great!


Leyla was a champ during all of the testing!  This was the Echocardiogram to check out her heart.

Looking for veins.

No tears!  These guys did such a great job!  One poke and 12 viles of blood!

EEG, looking at Leyla's brain activity.

Sweet hat!

Dinner before the sleep study.

High Five for the sleep study guy!

ALL DONE!  So happy the sleep study was over!


At two years and 3 months old, Leyla had her first hair cut!!

Leyla also got to announce that she's going to be a big sister in the fall!

Physically and verbally, Leyla has made huge strides in the past few months!  She is now crawling!  Whoop whoop!!  The day this happened was a little bitter sweet for us!  We now know what it's like to have a mobile toddler that gets into everything!  We can no longer set her somewhere and know she's still going to be in that spot when we come back.  At the same time; we are SO excited for her to have the independence that she does with being able to move around on her own now!  Just recently Leyla started to crawl up stairs and attempt to get to a standing position (we've got a long way to go on that one!). 

Leyla is now talking like crazy!  Sometimes, I have to remind myself that we've waited a long time for her to be able to communicate verbally with us and that I shouldn't ever stop her!  She is now using 2-4 words together, beginning to form sentences, singing songs, asking questions and just babbling all the time! 

Well, that's about it for right now!  I will try to update more frequently!