Thursday, August 22, 2013


Warning, long story coming...
Last month, RJ had an appointment with his geneticist.  While checking RJ's reflexes on his legs he noticed that any time RJ would bend and straighten his legs, his knees (mostly his left) would dislocate.  How have I not noticed this until now?!  We also have noticed (and unsuccessfully tried to correct with braces) his feet which are always rotated out, see below:
Therefore, he walks like a duck.  When he is sitting on the ground and his knees are pointed up, his pinkie toes touch the floor.  

We made an appointment with the orthopedic surgeon to assess primarily RJ's knees but also his feet/ankles and his shoulders.  He has always had an interesting bump between his neck and his shoulder socket and out of curiosity we wanted to determine what it is. 

Monday we had our ortho appointment and had some interesting findings.  
1) His feet and ankles are seemingly just fine.
2) His kneecaps (see below) are nowhere near where they are supposed to be

3) His tibia (lower leg bone) are rotated from the knee down which is causing the outward foot appearance (external tibial torsion)
4) His collarbone is missing the bone that holds it to the shoulder socket

At this point #4 is irrelevant and we will do nothing about it at this time. 

What does this mean?  It means we have signed ourselves up for a relatively stressful fall.  RJ will be having his tibia rotated, his patellas (kneecaps) realigned and his quads reattached.  Both sides at the same time.  This will required a lengthy (1-2 week) hospital stay, recuperation at home as well as lots of intensive therapy.  Why are we choosing to do this?  It will not get better on it's own and will likely get worse (especially his knees).  It is better to do this when he is 60 lbs rather than over 100 lbs. and, most importantly, it should make him a better walker and preserve his ability to walk for a longer time.  At this point, we are looking at October or November and we have a sedation CT Scan scheduled for mid September which should tell us more details.  We will keep you updated as we know more but please keep RJ in your thoughts as we go down this journey.


Mom said...

I hate the fact he will have this painful procedure done but I also know that for him to be able to walk as he matures is so vitally important. If he lost that ability it would be so difficult for him and you. I know he is such a little fighter and will do well but that dosn't make me feel any less anxious. Glad we are close by now that we can possibly be some help.

Gma Joan said...

Wishing you all the best in Ryan's journey!

So glad your parents are close to help you out!

Ms. Mayhem said...

Thank you for sharing your journey with us, there is tons of support and prayers for you!