Mack's Mom - Joubert Syndrome & Ocular Motor Apraxia

Thursday, January 9, 2014

Goodbye 2013....Hello 2014!

Mackenzie started 3 year old preschool in September. She goes 2 days a week from 9-12 at a local church preschool she started last January 2013. She began this fall with an aide, but after a month we gave a trial run to see how she would do without an aide. She did totally fine so she now attends school on her own! Since Mackenzie is 3 years old she has the possibility of receiving services through the public school. I started the assessment process this past month. I've held off until now due to Mackenzie doing so well with outpatient therapy and in the private preschool. We may continue with where we are but it will be nice to see what the school system has to offer. Mackenzie's 2 preschool teachers state that she's doing so well and is very social (which was one of my main concerns with Mack mainly due to her speech delay/being hard to understand). So for now, we are keeping Mack where she is since we've seen so much progress!


Mackenzie had a handful of doctor's appointments from August until November. She had her yearly bloodwork and ultrasound on her abdomen (all came back fine!) and check-ups with the neuro-opthalmologist and developmental pediatrician. Mackenzie was great during it all! She didn't shed a tear and did all that the doctors asked her to do. She even stayed still while getting her eyes dilated (the man dilating her eyes was very impressed by this- so was I!). Mackenzie appears to be very interested during the appointments. Maybe she will be a future nurse, doctor, researcher for JS?!




In October Mackenzie mastered going up steps on her own!


Mack enjoyed Thanksgiving and Christmas. We spent some time at the beach (which Mack loves!), and of course Mack enjoyed opening up all of her gifts on Christmas!


2013 was a great year that our family will always remember. We met so many JS families at the Race for Rare in February and at the JS conference in July. Mackenzie has grown so much in several areas. At the beginning of the year Mackenzie was walking but still have difficulty especially outside. Now she is running all over the place. I took the following video while we were at the beach a couple of weeks ago. I'm amazed at the progress she's made since a year ago when we were at the beach!


Mackenzie is talking more and more each day (she never stops!:)). She works very hard at the 'homework' the speech therapist gives her to work on certain sounds she has difficulty saying. She did the following video for family and friends for Christmas wishing everyone a Merry Christmas and Happy New Year.


2014 will be another fun year for Mackenzie. We have a big vacation planned that we know Mack will thoroughly enjoy. We took a break from swim lessons but plan to start again in the next month. Mackenzie started ballet this past week. She LOVES it! She's in a class with 4 other girls and did so well her first time. I can't wait to see how she excels in yet another area!


A good friend recently shared the following quote on FaceBook and I can't help but read it often:

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be.”  - The Water Giver

BJ and I look forward to what 2014 holds for our family. BJ and I would both be lying if we said we haven't questioned sometimes why things are the way they are, however, it seems like recently we have both stepped back and realized that Mackenzie truly is who she is supposed to be. And our family is the way it is supposed to be. God has truly blessed us not just this past year but also the past 3 (almost 4 years) that Mackenzie has been part of our family.

I will end by posting what has become my favorite "Mack" video- Mackenzie singing and dancing along to "What Does the Fox Say?"



Happy 2014 to you! Thank you for your continuous love and support!


3 comments:

  1. I love the progress she has made and I love and admire the love, devotion, and closeness all three of you share! Love you! Tee

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  2. I love the video of her singing the fox song! She is so cute and growing so much!

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  3. I love this blog. You and BJ are doing a great job with Mack. She is adorable and so entertaining to watch. Terry

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