Final Blogs Posts - Ethan Turns 2!

Ethan's blows out his candle!

8 long months have come and gone since I wrote my last blog update and so many things have changed, for the better! I have to be honest, when things are going well the inner need to share my plight diminishes exponentially. And lets face it, this just turns into yet another Mommy Blog. So these will be my last four blog posts. I want to bring to closure to this little adventure of mine for those who may have been following, and ultimately for myself.




The next four posts will serve to wrap up where we have been and shed light on where we go next. They will include:

• Changes in our lives and Where Ethan is now - as he turns 2! (This blog)
• What is Joubert Syndrome and how bad can it be?
• What does this mean for Baby #2?
• What's next for us and Thank you!

We have two big changes -

• New House! We bought a house! In all honesty, I think we bought the house for the dog. We were so tired of always having to leave our condo when he needed a pee break. Now Bailey has a yard!

• New (Old) School for Ethan: Ethan went back to his first daycare/preschool. Remember the blog post where I was so excited that Ethan got into this great Montessori preschool... well, not just 5 months later they kicked him out. It was a devastating blow for Terry and I. They had been working so hard with him we thought they were making great strides. They were holding him back in the infant section because he couldn't walk, and then they just told me it wasn't working out. I told them we had a prescription walker and he would be fine in the older kids section. The director responded by saying, "He will be made fun of. And we can't let Ethan use a walker if the other kids don't have one. It won't be good for his self-esteem."  I was floored. I was angry. But I ultimately decided this wasn't my battle to fight. I called his old preschool director and she was elated! We brought him back the following week.  He has prospered there ever since! He has even moved to the 2 year old room after his 2nd birthday. And you know what? The kids don't make fun of him. They knew he needed help walking and they actually supported him. The teachers there just manage it beautifully. The pictures below at his new school show just how well he is doing!

Ethan playing beautifully with 
the kids at school

So, Where is Ethan Now? 

Ethan riding in his first
ride by himself!

That is - where is developmentally. Ethan has blossomed into a full-blown toddler, with the amazing highs and lows that come with growing pains and starting the separation from us, his all-knowing parents. What's most interesting for me during this time is that most parents I know say they want to "pause time, or keep their children little forever". But for us, every month that he turns older he gets one step closer to closing the gap between where he is developmentally and other kids his age. Every month he gets older, we worry less and less about the boy and the man he will become.



What gaps has he closed?!

• Verbally: Ethan is so very verbal. He repeats words constantly and is now beginning to speak in two-three word sentences. "I see airplane."  "Sit down Mommy."  "I want banana." "Wheels go round."  This was key for us because so many kids with Joubert Syndrome are non-verbal or learn to speak much later with the aid of speech therapists.
• Cognitively: Ethan knows his basic colors, shapes, letters and numbers. We are constantly impressed with how quickly he picks things up and how much he learns at daycare too. He knows his animals, different foods, his friend's names, his teacher's names. He knows his Mommy!  
• Physically: Ethan WALKS!!!!!! From the time I started writing this very blog post till the time I published Ethan has learned to walk! It's amazing!!! He can stand up on his own and walk around everywhere. This is huge for us. HUGE!!!! We are so excited about this!  See this adorable video of Ethan just learning to walk! https://www.youtube.com/watch?v=kRp4ulGBOX4
• Socially: Ethan loves people! Loves them! If he can make a person smile, he is elated. He flirts constantly. He wants to make friends with everyone. He loves to play with older kids and to hug the littler ones (though not always gracefully).  He loves to roughhouse. Tickle monsters and tackle monsters are some of his favorite games. 
• Emotionally: Ethan is extremely opinionated and is very clear in what he likes/doesn't like. For the first half of his mini-life Ethan didn't seem to care one way or the other about things. Whatever toy you gave him was perfect. Whoever held him was fine. Wherever you left him he was content. It was easy - but it scared me. It didn't feel "normal" to me. But now - well, now he's just as opinionated as I am. He wants what he wants when we wants it. And we hear "No" all the time. Some people say "Be careful what you wish for." But we're fine with it. Everything he does that's on the spectrum of "normal" - no matter how much of a pain in the butt it may be - we are grateful!

Ethan loving the bounce house at his 2nd
birthday!

Next Blog: What is Joubert anyway? How bad can it be?

I'm writing this blog because even though Ethan appears to have a pretty mild case, Joubert Syndrome itself is no joke. People are always asking me about it - so I figured I would spread the word to help us and help those less fortunate. Please check back tomorrow!