I failed to mention in the first post that Mackenzie was also diagnosed with Ataxia due to her unsteadiness. This diagnosis was made in September by her developmental Pediatrician. There have been several recent posts on the Ocular Motor Apraxia Support Group Facebook page. In one of the posts, someone mentions that their child has the head thrusts and eye movements that are common with Ocular Motor Apraxia but does not have any unsteadiness/lack of balance. I'm wondering if Mackenzie may have more of a severe case of OMA or maybe the Ataxia is causing the difficulty with balance and it's not connected to the OMA. It's questions such as this one that makes me wish that we had a doctor to go to who could answer. We are hopeful that we will find a doctor in the near future. Mackenzie has an appointment with a Neurological Ophthalmologist at UVA in January. We were asked to give a summary of Mackenzie's appointments and any doctor reports that we have (actually sent an email to UVA about an hour ago with the info). This is giving us a lot of hope since this means the doctor will already have information about Mackenzie before he even sees her.
As for Mackenzie: Every two weeks she has physical therapy. The therapist continues to state that there is obvious progress with Mackenzie's mobility which I love hearing. Just the other day Mackenzie pulled herself up against the ottoman and attempted to climb on top of it. Of course I had to catch her from diving over the top and going face forward to the floor. :) Later in the day she tried to climb onto the couch to sit beside me. I know most parents dread the day that their child starts climbing because it means just another thing for the child to get into, but I am so ecstatic to see her attempting to do this. It means that I need to be right by her more often because a hard fall will most likely happen if I'm not, but I honestly don't mind. I love seeing her do new things. She was recently given a rocking horse that has been passed down through several families at church and it's by far her favorite toy. Again, I have to be right beside her because she has fallen numerous times but just the other day she was standing beside it holding onto the handles with both hands and let go with one hand. Then she slowly let go with the other. Granted, it was only for 1 or 2 seconds before she quickly grabbed the handles so she wouldn't fall, but she stood briefly on her own without holding onto anything!
In the past few months I have been asked the difference between Mackenzie's falls and a typical baby/toddler falling. People have told me that I need to let Mackenzie learn to do things on her own- that I shouldn't be right on top of her. Some say that she needs to learn how to fall and get back up because every baby falls often. I do agree that every baby does fall especially when they are learning to pull up and start walking, however, Mackenzie's fall are not the "typical" baby fall. For example, Mackenzie does a great job crawling on her hands and knees. It's been a few days since I've seen her do her "army" crawl. However, when she is crawling, she will randomly lose her balance and collapse to the floor. This is fine if it's on carpet, but when she is on wood or tile, it hurts. There are times when she is very close to the wall and will go to the side and bang against the wall. When she is pulling up into the standing position (holding onto something such as the couch) she tends to fall. She doesn't know how to catch herself. The best way to explain is to imagine if you are standing up and someone pushes you back. Your brain will tell you to bend your knees and to put your hands down to catch yourself. You may still get hurt but bending your knees and catching yourself breaks the fall quite a bit. When Mackenzie falls, she does not bend her knees or catch herself. Imagine standing straight up and falling back without bending your knees or catching yourself with your hands. You could get injured badly. That's why I am always right by her. When she is pulling up, I simply guide her with my hands near her waist and make sure she does not fall. Some people see this as doing it for her but I'm letting her do all of the work but am keeping my hands nearby to catch her if she falls (because she has fallen straight back before and it was an extremely hard fall). I never want her to get dependent on me being there by falling into my arms on purpose so when I see her falling I catch her but then guide her to the ground and show her how to catch herself. Mackenzie is starting to become independent because she will push my hands away from her and try to do things all on her own (of course I still keep close by because she does still fall). I love this because it means she is determined to do things on her own. :)
Here is a beautiful picture of Mackenzie taken this past week. Even though she's been pulling up for a little over a month, I still love seeing her standing up when I walk into her room after nap. She always seems so proud of herself and of course we are so proud of her! :)
Here is one from Halloween. She was the cutest cat. :)
Here is a recent video that I posted on YouTube. Mackenzie mastered the "E I E I O" part of Old McDonald. Very cute! I posted this video because you can see Mackenzie's "head thrusts" while she is focusing on opening and closing the lid to the cup. The head thrusts seem more prevalent when she is doing something that has to do with her hand-eye coordination. I'm assuming it has to do with her focusing closely on the object. Right at the end she jerks her head to the side. She tends to do this when one of us or the cat walks by her while she is focusing on one of her toys. I have added a few other videos on my YouTube page (bjwhitmack), however, I warn you that some are long. I have to go through and edit/cut part of them out.
**Please excuse the singing on my part! Mackenzie's singing is much cuter than mine so it's worth watching. :)
