DOWN ON OUR KNEES

 

The title of this post has many different meanings:

1. Our boys have Down syndrome

2. Jonah has knee issues 

3. Dealing with both of those issues is best by bathing them in prayer!

In regards to Jonah's knee issues, here is a copy of the recent email I sent to Jonah's special ed teacher and his physical therapist regarding our appointment with an orthopedic surgeon yesterday:

Jonah has a double "blessing" of having extreme laxity on both knee caps plus he has shallow grooves on both knees.  This makes him very prone to both knee caps sliding out of place which is very painful for him.

This summer, after his major fall in June, the orthopedic doctor suggested we really work on strengthening Jonah's core and leg muscles.  The hope being this would keep his knee caps from slipping without the need of the braces.  

What we have noticed over the past 5 months of this targeted PT is Jonah is very strong in his leg muscles and somewhat strong in his core.  However, we are continuing to see him fall from his knee giving out, close to 1x week.  His PT suggested we contact orthopedics to get an assessment for where we are at with Jonah given that PT is rather impressed with Jonah's strength at this point.

Interestingly enough, Jonah's knee hasn't given out at school even though I know the knee braces tend to slide down during the day.  My only thought is Jonah doesn't move quite as much or as impulsively at school as he does at home where he is running and jumping and twisting and turning constantly :) 

Our appointment yesterday was with an orthopedic surgeon to see what options there are for Jonah.  Surgery at this point could be an option, but it doesn't hold the best results because Jonah also has the shallow grooves which often make surgery results unsuccessful.  Also, even with the surgery, the doctor would still require Jonah to wear the braces full-time so that really doesn't get us ahead either.  Plus the recovery for 1 knee surgery is 6mths, Jonah would need both knees.  Plus, there is a chance, he would need more surgery once his growth plates close up in his later teens.  At this point, we are choosing not to go the surgical route right now.  Too hard on Jonah and not the greatest outlook for results.  If Jonah's falls increase or get worse, we will reconsider.

So going forward, we know the knee braces are our best bet.  I think the only take away for school regarding this issue is to make sure the braces are in place, especially when he goes off to recess or gym class.  Not sure if braces are considered an IEP issue?

For PT going forward, our original goal was to help with Jonah walking with not walking with his feet pointing in.  Then we added the core/leg strength to help prevent the knee caps slipping.  Not sure where we are at with goals going forward or what we have to meet for BadgerCare/Forward Health to continue covering?

One thing the doctor pointed out yesterday is that the braces may not be a lifetime thing for Jonah because often as individuals with DS get older, their activity level goes down which puts less stress on the knee caps.  Right now I have a hard time imagining Jonah not being active- haha!  Plus it's kind of a double edged sword- less activity might be good for his knees, but high activity level is good for reducing the other health risks for DS like obesity and diabetes etc.

Oh well, as with everything with these boys, it's in God's hands.  He'll give us the strength and wisdom to deal with whatever situation they present to us.  I have to remind myself of that quite often because they can present some interesting challenges:)

Final take away from yesterday's appointment: the doctor doesn't think the compression vest is necessary at this point if PT is having good success with Jonah.  So one less thing for Jonah to deal with wearing each day!