Saturday, August 2, 2014

2014 August

2 August 2014

Mackenzie got a new wheelchair last September as she started the 7th grade. She has already out grown it and refuses to sit properly in it.  She likes to push her butt out as far as possible and sit on her tail bone.  We have not devised a way to prevent her from doing this, so we have had her fitted for (and ordered) a custom molded seat for her chair.  I will provide updates on how this is working after we get it in a month or so.

She has grown so much - she now comes up to my nose.  Of course, this makes it more difficult to care for her,  but she ours angel and we will do what we can to give her a good life.

It was also extremely hot the first few weeks of school and without air conditioning this creates a miserable situation for any student.  Due to Mackenzie's brain injury her body fails to regulate its temperature the way that it needs.  Hot environments make her physically ill (vomiting).  I was so pleased with the school officials and their willingness to accommodate Mackenzie's condition by placing her in one of the few air conditioned rooms (computer lab or band) during these times of intense heat.  This year the district is running the elementary and middle schools on half days for the first 2 weeks in anticipation of the heat.

In February, Mackenzie got a new baby sister.  She has added an element of entertainment to Mackenzie's life.

Unfortunately, being a true teenager, Mackenzie has several bouts of irritability.  This makes her difficult to be around because her only (chosen) mode of communication is to yell and scream and cry.  To ease the tension in our home, Mackenzie has been prescribed a synthetic marijuana drug by the name of Marinol.  We have been using it daily for about 2 weeks now and I have to admit - it makes a difference!  She has been consistently happy (or even content) more now than she has been in years.

Mackenzie's spine and hips were X-rayed recently (last time was in 2009).  Luckily, there is no significant spine curvature or hip displacement.  In addition, just like all doctors when they first meet her, the doctor commented on what excellent shape she is in this far out from her injury.  She has very little issues with tone and no spasticity.

She stopped Occupational Therapy because she was no longer making progress and her Physical Therapy has been cut back because her progress slowed.

I must say though that I am EXTREMELY pleased with the staff at her middle school.  They do so much for her and with her!  They put her in her walker (or an adaptive tricycle) several times a week.  They created an adaptive PE class for her and her classmates.  They include her as much as possible with the regular PE activities.   I am sad that this will be her last year at this school as she will be moving to high school in the fall of 2015.

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