... Or - The story of how a thirty-something single gal entered into a co-parenting agreement to have a baby with her ex-boyfriend, and then they got back together, and then had a baby with Joubert Syndrome, an incredibly rare neurological genetic disorder. Between being a new couple, new parents, and all that comes with a special needs baby, see how they're coping today!
I cannot believe my last blog entry was in June. We have just been doing so much traveling! But now, as we hit the end of August I find myself with my first free afternoon in months. I put Ethan down for a nap, took a brief nap myself, and now I am finally back to this blog that I missed oh so much!! (P.S. I forgot how amazing naps actually are…)
Ethan's 16 Month Photo shoot
Well – I am bubbling over with excitement to write this blog entry as Ethan has just made leaps and bounds over the past two months. He is doing so well that I can even say in some areas he’s doing well for toddlers his own age… not just well for being a child with Joubert. Here are the highlights:
Physical Achievements
Ethan walked from the backdoor to the front door with his little V-Tech Walker all by himself! I
Ethan on the Treadmill!
was there hovering in case he fell, which he does, but he’s learned to fall to his knees rather than flat on his face. Trust me, that in and of itself is a big deal!
Ethan can pull himself up from the floor to the coffee table by himself!
Ethan has learned to hold the coffee table and reach down to pick up a toy. This is also big because for months he would throw a toy on the ground, then just cry because he had no way of picking it up again.
Ethan can now push himself from being on all 4s to sitting up. Again – for a year now if he was on his stomach he basically just laid there and cried.
Ethan is eating with a fork! Not completely by himself… but he’s getting there. This was an additional requirement for him to move to the Toddlers section in school
Words Ethan Says:
Walking with my cart!
Thank you, Love you, Daddy, Hi, Doggie, Yum Yum, Moo, and Who Who for owl sounds. (No Mama – Ethan still refuses to say Mama!! I’m trying not to take it personally!)
The reason this is so important to us is because many children with Joubert don’t begin speaking until much later and most with the help of Speech Therapy. There are some adults with Joubert who still don’t speak well, if at all. So this is no small concern of ours. Every word Ethan says with contextual accuracy is a giant leap for us!
Cognitive Updates
I’ll save the cognitive updates for another blog post when I receive his evaluation from the Harbor Regional Center. They gave him a whole host of cognitive development tests and he did very well!
Ethan’s New School Updates
Pensive little man!
So – to be honest for the first three weeks he was at his new school I thought I had made a terrible mistake. It was very far away and much more money per month – so to justify this I really needed it to be a remarkable difference. At first – I was underwhelmed. During the day there was really nothing that was cluing me in that he was doing any more and/or any better here than at his old school. And Ethan starting crying when we dropped him off – he NEVER did that at his old school. I was so stressed during this time I began getting tension headaches. I finally told myself to stand back, wait one full month without calling his old school, without looking for alternatives - just taking a break.
I had one saving grace, his therapist from Jr. Blind of America visits him once a week at this school to do exercises. I asked her honestly what she thought of this school, and she said overall she thought it was a better fit. This was the first step in trying to be more realistic and objective. Ethan definitely went through a period of adjustment, but just two weeks into that month I was giving myself, I noticed that he was doing better. A bit more focused. Stronger. They really work him out at this new school. And they separate the different age groups so the infant center is calmer. Overtime I was able to get there in time to watch them really engage in activities with him.
It’s still more money and farther away… but by the end of the month we felt that overall it was worth it so the tension headaches are finally gone! Phew!
Next Post
Up and down the slide!
So that’s us in a nutshell… a large, fast paced, wild and crazy nutshell. In the next couple of blog posts I’m going to write about his evaluations in PT and the Harbor Regional Center, but I’m also going to do a post about Joubert in general: what it is, the genetic aspect of it, how bad the extreme cases can be, where Ethan falls in that spectrum and what we’re planning on doing for our second child. :-)
Thank you to everyone for reading and commenting. You have helped get me through some rough patches. We’re definitely in a period of highs and high-fives!
