Splint making 101

Andrew is back to dictating his school work due to unstable wrists.  The radius keeps popping up and crossing over the other bone in the forearm where it gets stuck.  This is very painful.  The off the shelf splint wasn't helping at all.  We had one clam shell splint from the last time this happened.  It needed a bit of work because the latex free tensor was biting the dust. 

I must confess that I have a bad habit of hoarding any old splints because I might find a way to use it differently another time.  Splint making materials also happen to be a bit on the expensive side.

I gathered up some cotton knit stocking tube and foam.

I covered the foam with stocking tube.  I couldn't find anymore tongue depressors so this time I raided the classroom for small rulers to sew down the middle.

Next step was adding the adhesive backed vlecro.

Finally I added vellofoam straps.

Now he is good to go. 

He just needs the wrists to calm down again but that can take several weeks.  So I see a lot of scribing in our future again.

Always a new challenge

As the boys grow their joints become more unstable and painful.  Last Sunday Josh woke up with a dislocated shoulder.  I had a lot of difficulty reducing it completely and it continued to dislocate over 30 times that day.  Of course the shoulder that dislocated is the left one and he is left handed.

Just to keep life interesting on Tuesday morning Josh twisted his right ankle.  He had some swelling and a lot of discomfort.  He also vommitted a few times but that may have been due to pain.  He had a day of bedrest and RICE.  Wednesday morning when I re-evaluated the ankle it was rolling in about 30 degrees.  Based on my past experience I knew that the ankle needed a lot of support.  Unfortunately the ankle could still roll in the AFO so Josh is now in an aircast. 

Now this is where life gets interesting because Josh doesn't have the shoulder stability to use his walker or crutches so he is in the wheelchair full time.  We had enjoyed a nice break from full time wheelchairs.   Wednesday morning before leaving for work I had to go through the house and re-arrange things to make sure that Josh could get everywhere he needed to in the wheelchair.  Now i just need to figure out what to do with the palm tree in the bathroom before Josh hits it and dumps it everywhere.

Andrew's wrist (the right one of course!) started causing him problems yesterday.  The two bones in his forarm are rolling and crossing and then getting stuck.  This means that he is back in a clam shell splint to hold everything together.  Unfortunately, the latex free tensor and clips never stay on place at night. So this morning I added adhesive velcro on the outer sides of the splint and cut vellofoam to hold it.

Andrew is getting reaquainted with Maplesoft so that he can do his math work on the computer without having to dictate.  I really need to find someone who can do some tutoring for us so that the boys can get the most out of the program.  If you want to find out more about it check out:  http://www.maplesoft.com/

Today I am hoping that our physical therapist will arrive and work some of her magic so that the boys are more comfortable.

I would be really happy if we could go a day without any new medical excitement.

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.

Exhausted

We are almost through the second week of school and I'm beat.  Most of the activities the boys are involved in are up and running again.

The weather has been damp or rainy for the most part and both boys are growing.  Growing and/or rain always result in a significant increase in joint dislocations.  If you have ever dislocated you shoulder imagine dealing with 60-80 dislocations a day multiplied by 2 boys.  Sleep is pretty elusive when the boys are up 12-20 times a night.  The hardest part of it all is seeing how much pain the boys are in.

Right now I would give a lot for a whole night of sleep.  Maybe I will sneak off now and try to get some sleep.