Just Because it's Calm...

In the world of special needs, even when things are "calm" on the surface, there is always something going on below.  At our last trach/vent clinic we decided to get some labs done on Kai.  We were specifically checking his vitamin D levels and bone density.  His vitamin D levels came out normal.  His bone density came out as that of a seven to eight year old.  At our last check, his bone age was only a few weeks ahead of his actual age.

At two-and-a-half, to have the bone age of a seven to eight year old is quite a jump from a few weeks.  I haven't checked with fellow MSS families to see if this is normal for the syndrome.  I do know advanced bone aging is part of the syndrome. However, I don't know if the bone aging continues to rapidly advance ahead of actual age.

What this means for Kai is an increased chance of osteoporosis, non-stress related fractures, brittle bones, and all the fun things that are associated with older bones.  Kai will also most likely be short in stature due to bone maturity; so even though he is a big kid now, he may reach his maximum height at ten (or younger/older--I am just throwing in a random age). 

Kai also smells like an adolescent boy.  That is, he has very definitive BO, plus some hair in his nether region.  He is a hairy kid all around, so we are doing more labs to check to see if he is going through puberty early, or if it is just him being stinky and hairy.  From the labs so far, he is just stinky and hairy.  Just to be certain we are going to run a few more tests.

Another recent development is the back brace.  Kai has developed mild scoliosis (a small hump on one shoulder), and to correct it we have to put him in a brace.  When we were talking to the doctor about it, I thought it would be soft, but this is a hard plastic.  Honestly, I feel awful putting Kai into such a stiff contraption.  He is supposed to wear it between 6 and 12 hours a day.  That is a really long time for a kid to be practically immobile.  Although it may seem like Kai doesn't move much, he really does wiggle himself around quite a bit.

Kai hated the brace at the clinic.  When we brought him home and put him in it, he was actually quite content, although when we took it off, he was all wiggles and coos.  So maybe this awful looking device won't be so bad... I hope not.  We have to be really careful not to irritate Kai's skin, he has to wear a shirt with it, and we have to rotate it on/off every few hours.

Going through all this really gives me an appreciation for what our bodies tend to do naturally.  Who would have thought that something as simple as sitting and standing have such an impact on our skeletal structure?