Archive for June 2018


Eleven and End of 4th Grade

Ren has had a busy six months, which is the last time I wrote on here!  So, here it is in a nutshell:

January:  Ren had a minor bladder procedure, where they inject Botox – yes, Botox – into her bladder.  This helps relax the bladder, which lessens the pressure in the bladder.  Too much pressure there causes urine to go into the kidneys, which can lead to bigger problems.  So far this procedure, along with some daily medication, seems to be keeping that all in check.


February:  The PT at her school brought in an adaptive sit-ski for her since her class was in a cross country ski unit.  She loved it, even when she went so fast on the very slick snow that she rammed into a fence.  The poor weather limited her use of it, but it was a great experience in trying it out.

Ren was invited to a birthday party at an indoor waterpark.  I went along this time, and she had a wonderful time playing in the splash pool and floating along the lazy river for like four hours.  She wanted to stay longer.


April:   Her birthday – She turned ELEVEN!  She had a party with friends at the bowling alley and had a great time.  She used the ramp to roll the ball down the lane, mostly independently. Her friends would help her out as needed.


May:  Ren’s PT at school also brought in an adaptive handcycle for her to try out.  She did really well and had a lot of fun, despite the amount of energy and work needed to do it.  She only had it for the last couple weeks of school, but hopefully they will be able to use it more next school year.   At the end of the month, she had her piano recital.  Oh, she loves that kind of thing!  She was so excited for this event, and she did a really nice job.



June:  The school year ended; her fourth grade year is gone….she just refuses to stay a little girl!

One more significant happening:  Ren has been scheduled to get a new wheelchair.  Her current one is on its “last legs” – the front castor wheels bearings are shot so they wiggle constantly, preventing her from going at any decent speed, the wheels’ alignments are off so she is always compensating for that, her brakes are being held in place by a hairband, and it is way too small for her – her knees are way up when sitting.  She’s had it since she was FIVE.  Here’s the thing —- We started this process on January 4th.  SIX MONTHS, and we are still waiting to for approval from insurance.  This is SO frustrating and upsetting.  I have no words to describe how I am feeling about all of this.   Sadly, this is normal for all wheelchair requests.  People have to wait months even to get a repair done.  These wheelchairs are their LEGS, their mode of getting from here to there, and the fact that this happens all the time….is really, really wrong.

Well…That is it for now.  The summer has begun, and she has already been involved with some activities, but I will save that for an end-of-summer blog.