Wednesday, April 29, 2015

No News is Good News

Blogging here seems so sporadic but that is usually a GOOD thing, it means Mason's health is going along on a nice, smooth path with nothing unexpected.  We've had fun as a family and just this week was Mason's first family bowling trip.  Here are some general health updates:

  • We're struggling to get his braces adjusted right.  The HKAFOs (standing braces) are not quite working out.  Because one of his knees won't straighten all the way due to the broken femur and extra thick callus the healing bone laid down the braces put pressure on his thigh.  That means right now he can't wear the braces for more than 30 minutes at a time, when we would like to see him getting 2-3 hours a day in them.  (Remember, standing promotes bone growth and density, helping his osteoporosis. That is why we keep adjusting the brace and trying.)
  • Mason is scheduled for his third IV infusion for his osteoporosis next month.  We're almost through the first year!  One more dose after that and it will be time to check his bones to see how they have responded. 
  • We've taken the arm rests off Mason's wheelchair.  This may be temporary, it may not.  The idea was for Mason to try it and see if he likes it.  (It makes the chair lighter for him to push, means less is in his way when climbing in or wheeling around, etc.)  It does, however, mean he's had to develop a new climbing pattern and some more upper body strength.  He figured it all out while we were waiting for our physical therapy evaluation next month at Myelo clinic.
  • Bathroom business - Mason's nightly cone enemas are going pretty smoothly. We've gotten a decent handle on the amount of dietary work we do (lower amounts of dairy, added almond milk and the needed miralax, encouraging drinking water often and juice once per day) so we have been able to avoid major constipation backups for a while.  This is a huge deal!
The last few weeks have been so interesting to watch.  I've been through it before as Mason is my 7th three year old, but it is always fascinating.  Mason has started to pretend play.  He becomes a sea turtle (with a pillow for a shell), he turns a tub into a car to drive, he decides he is a frog.  He is also making buildings with Magna-Tiles on his own, drawing more, and becoming more opinionated. 

Coming up in May Mason has several appointments.  He'll kick off the month with his third IV infusion for his osteoporosis, then spend a full day at Myelo Clinic seeing about 8 or 9 of his specialists, having ultrasounds, etc, and he also has an appointment with his developmental opthomologist for an eye checkup and to see if his glasses prescription needs updated.  It's going to be busy but hopefully uneventful!  That's the way we like it.

As always, if you have any questions about Mason, Spina Bifida, Hydrocephalus, etc. please leave a comment and I'll do my best to answer!


  1. You are right-- no news is good news. But, I miss hearing how he is doing. Glad to hear that he is stable and perhaps advancing with standing. Now hoping that the osteoporosis is improving too.

  2. Glad for the update!!! Glad things are uneventful too!!

  3. Enemas are "going smoothly." That's pretty much the definition of an enema, right? Crack me up. Glad things are "going well!" *wink*


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