Mack's Mom - Joubert Syndrome & Ocular Motor Apraxia

Sunday, February 22, 2015

Repetition, repetition, and more repetition (with patience thrown in!)

When Mackenzie was learning to crawl, pull up, stand, walk, etc...I learned that repetition was the main key. I would help her move the correct way (by doing exercises the physical therapist gave) and just kept doing it over and over as long as she tolerated it. I used an empty bottle of water and cell phone as motivation for Mack (those were 2 items she, for some reason, loved:)). If she ever became frustrated then we would stop. I never wanted it to not be fun for her. Of course I'm still using repetition for her mobility with going up/down stairs, jumping, etc.

But now I am realizing that repetition (and lots of patience from both of us!) is needed even more when it comes to learning colors, letters, numbers.....and I am quite certain we will continue with this as she learns more skills!

A few months ago, I decided to really work on Mackenzie's name. And after A LOT of hard work on Mackenzie's end, she got it!


I don't expect you to watch all 9+ minutes of this next video (which is the extended version of the video above). But on this certain day, Mackenzie was determined to learn how to spell her name. And since she showed no signs of frustration, I knew that I needed to have lots of patience and just keep on! I'm so glad I got this on video because it was and still is such a proud moment for the both of us!


For whatever reason, the letter "E" was the hardest for Mackenzie to remember. So I came up with the idea to do the sign for "E" and draw it out quite a bit--"Eeeeeeeeeeee!". And it ended up sticking! So now, even several months after this, Mackenzie will proudly spot an 'E' and let me know she knows that letter! And every time, I make sure to praise her! I also did signs for the other letters since Mackenzie's learning is quite visual (and used other ways to remember the letters such as pointing to my eye for the letter "I").

We are still working on letters (and are throwing in lower case). Mackenzie consistently knows around 18 of the 26 letters (for both upper and lower case). Mack has had several moments of frustration. Just like with learning her name, I'll go through the same letters over and over and certain ones just won't "click". The older Mackenzie becomes, the more frustrated I see her getting when she can't remember. There are times I'll pull the flashcards out and she'll tell me "no, I don't want to do letters right now". And 99% of the time she tells me that, I can tell she is frustrated. So I will pull out an activity/learning skill that I know she can successfully do to help build her confidence (I did the same thing when it came to her mobility).

This past month we have focused on writing her name. Mackenzie has been able to write "MACK" for about the past year. Since BJ and I decided to name give our daughter a very long name:) I knew that learning her name correctly (using lower case) would be helpful with learning more letters. So we started with "Mackenzie".....


Then we worked on her first and last name.....


And then we added her middle name into the mix...



I use to not think much about the milestones Mackenzie would hit after she started walking, however, now I realize that there will always be something to celebrate (big or small!).

Below are 2 videos of Mackenzie recited the Lord's Prayer and the Pledge of Allegiance. Memorization definitely is a strong suit for Mackenzie! 






The older Mackenzie gets, the more frustrations and struggles I know she will encounter. However, I am certain that she will continue to turn her frustrations and struggles into becoming even more determined. I have pushed her too hard at times which has resulted in both of us getting frustrated. Mackenzie may take longer in certain areas (and even faster in others) so I have to keep reminding myself to just let her work at her own pace. And I'll even have to teach her as she gets older that it's ok to work at her own pace no matter what others may say. Mackenzie has definitely taught me that every person learns in their own way and also in their own time. And that it's totally ok!


I'll end with showing off a picture Mackenzie drew of our family (including the dog and 2 cats:)). She's become quite the artist!


Wednesday, February 18, 2015

One month left of being 4 years old!

Hard to believe that it is only 1 month until Mackenzie turns 5 years old! Since it's been nearly 7 months since I last updated, I'll jump right to it and go through some of the key events of the past several months!

At the end of July Mackenzie went to a special needs horse camp.


Mack absolutely LOVES horses! Horseback riding is not only a lot of fun for Mack, but it is so beneficial to her physical and emotional growth. It's helped her build confidence. I am certain that Mack will continue horseback riding as she gets older.


Very thankful to have a place nearby that offers horseback riding for Mackenzie!

We were able to spend a few times at the beach over the summer and into the fall. Mack has become a beach bum!


Mack found a sand dollar and a huge shell that she was quite proud about. (And I was a tad jealous since I couldn't find any!)




Mackenzie's already a better swimmer than I am!  (And she has a lot less fear than I had at that age:)).


I love watching her run on the beach!


Being able to escape so often to the beach has been a good break for both me and Mackenzie! We continue to maintain a pretty busy schedule so it's nice that we've been able to relax every now and then!


At the beginning of August, Mackenzie had her yearly appointments (check-up with developmental pediatrician, ultrasound on kidney/liver/spleen, and bloodwork). All came back looking great! And Mackenzie did an extremely good job throughout the very long day. She shed no tears when they took blood and sat still during the ultrasound. And as a treat- dinner and dessert and her favorite- Chick FilA.;)


The next few pictures are random ones at the end of summer.

Our dog is 2 years older than Mackenzie so Mack has had him around since she was born. He is a tad hyper/crazy, but he is a great dog/companion for Mackenzie! So fun watching her run around with him.



Our friends basically live in 'the country' and invited us to camp on their land. Mack is very close with their daughter and was quite excited about this opportunity. She packed her bags (and chose her own outfit:)). We had a lot of fun going tent camping!

Mack makes her daddy proud.:)  - playing with her trucks in the rocks/dirt!



September was a huge month for Mackenzie. She began preschool. She goes 2 mornings a week at a local church preschool. Mack is doing extremely well! She has an aide (a local college student) for assistance when needed, however, has become quite the independent/determined girl while in school. Below is a picture of the morning before her first day of school.


Mackenzie ran her first race in September! It was a 1/4 of a mile. She ran it with her daddy. I have a feeling that this will be the first of many races for her!


Mackenzie really showed her determination in the fall by going through a few corn mazes- one of which was very long and difficult! I was certain I would be carrying her midway through it, but she kept walking on her own. It had rained the day or two beforehand so there was lots of mud making it hard to maneuver at times. Mack fell here and there but got right up and kept going! She was very proud of herself when we made it to the end (and I was proud of myself for actually finding the way out!;))


During the month of October Mackenzie mastered jumping off of the bench at physical therapy. Up until that point Mackenzie would have to hold onto someone's hand to jump off of a ledge/step. If she would do it on her own then she would land and fall straight to the ground (assuming her leg muscles just were quite strong enough to let her balance and stay standing). Now every time she comes to a ledge in the parking lot, is at the last step, etc. she has to jump from it.:)


Mackenzie also mastered walking up and down the steps (and even going up the steps without holding on to the railing!). I know I've mentioned this before- I absolutely love how we get to celebrate every little milestone with Mackenzie!


This past Halloween Mackenzie dressed up as SuperGirl. She definitely fit that character perfectly!


Mackenzie had a great Thanksgiving and Christmas! Below is the picture we used for our Christmas cards.


Mackenzie has never been too fond of Santa Claus. She loves watching shows/movies with Santa in them, however, she had always refused to get near him (and if she did then she would cry). We attended a local Christmas event, and to our surprise, Mackenzie got on Santa's lap and willingly talked to him and smiled to take a picture with him!


We spent Christmas at the beach. My favorite picture is the one below.:)




Mackenzie continues to take private swim lessons. Her new 'thing' during lessons is going under water. She definitely gets her swimming skills from her daddy. I love the water but am not the best when it comes to swimming.:)


She also continues to take dance (combo of ballet/tap). She has the same instructor as last spring (who does amazing with Mackenzie!). It's helped with her balance/coordination tremendously.


The next several pictures are just to show you how much of a fashionista Mack is! Every day she comes out of her room with a great combination of items/clothes. There's never a dull moment in our home!







These next 3 are pictures taken just the past week. Mackenzie finally got the snow she's been hoping for. She requested to build Olaf. I attempted at doing so (and she was pleased with my attempt so that's all that matters, right?:)). 



She really enjoyed sledding all on her own! (She enjoys doing anything as independently as possible!:)) 



So I think I summed up the past 7 months as good as can be and has briefly as possible! I do have a few more pictures/videos to share that have to do more with what she's learned (reciting, writing her name, etc), but I will save those for the next post (which I really do plan to do within this next week!:)).

This has been fun to go back and look over the past several months - I am with Mackenzie every day (and most of the time all day long) so I don't always see the progress that's being made on a day to day basis. But I definitely do when I look back at just these past several months.

As you can tell, we remain pretty busy between preschool, therapies, dance, swim, and so forth! but I wouldn't change anything about that. We take much needed breaks often and the activities she participates in have all been so beneficial to her growth (plus she loves them all!).



I look forward to what God has in store for our family in 2015 and hope everyone has had a great start to this year. As always, thanks for your love and support!