On the road to recovery

Last Monday I had dental surgery.  I had some cracked teeth that needed repair and one to be pulled as it abcessed before the surgery.  Since local anethetics don't work I had to go to the hospital to get knocked right out.  The surgery itself went fine but my jaw remained dislocated for several days.  It remains painful at times still. 

I think the biggest surprise since Monday is how much better I am feeling.  I guess that the infection must have been much worse than I though.  I was pretty much non-functional the week before surgery with pain and fatigue but now I realize that I had been sick for much longer.  I finally feel alert again.  This should serve as a reminder not to put off looking after me again because it impacts everyone.

Over the next few weeks the boys may be wishing that I still felt under the weather as I work to get us back on track and organized for a busy summer.

Kids and Chronic Pain

My kids both have Hypermobile Ehlers Danlos Syndrome.  This means that their body doesn't make collegen propperly.  As a result their joints are very lax and prone to dislocations.  On average day would be around 50 dislocations a bad day (during a growth spurt or weather change) can be closer to 80-100.  The dislocations are painful.  They often fall when ankle, knees or hips dislocate. 

It took years to find a pain medication that they weren't allergic to that could actually offer some relief.  We will always be grateful for the help we recieved from the Pediatric Pain Clinic at the Hospital for Sick Children.

Sadly, the teen years of rapid growth and the tumultuous weather of late have made life a lot more difficult.  In June both boys were diagnosed with scoliosis.  Josh's curve is very low in the lumbar region (low back).  Knowing what is happening has helped us to understand why sitting is so very painful for him.  In the morning he can manage 15-20 minutes at a time but by the afternoon lately even 10 minutes is painful.  By 4 o'clock he just can't get comfortable at all.  Pain meds are only helping a little at this point.  He is regularly needing breakthrough pain meds.  Thankfully, our amazing physical therapist has been able to help with some stretching exercises and position recommendations. Josh hasn't started to do his major growth spurt but we know that it is coming and things will get a lot worse before they get better.

I can't begin to describe how hard it is to see your child in pain and know that you can stop it.  We still have more than a month until the boys see a surgeon.  The first appointment is for assessment purposes so we still won't have a treatment plan. 

Now on top of all these challenges we have to explain to family that travel over Thanksgiving is out of the question right now.  Stopping every 20 minutes or so through what is normally a four hour drive just isn't feasible.  It isn't that we don't want to see everyone but we don't want to see Josh having to cope with any more pain than he already does.

It isn't easy but we will keep plugging along and making the best of the good moments when they come.