Hypotonia aka Floppy Baby Syndrome

Noah, like many babies with Agenesis of the Corpus Collasum or Sandifer's or Septo Optic Dysplasia, has what is called Hypotonia aka Floppy Baby Syndrome.  Like this picture above you will see that these babies are unable (at the time being) hold their heads up or use their muscles because basically their muscles are just too weak.  If you go to here it will go into great detail about what hypotonia is or does or makes things hard to do.  I don't want to bore you with a large cut and paste post so I am going to leave the detail up to wikipedia :)

Noah struggles in this area a lot.  When he was first born and nobody was the wiser about his conditions I remember the lactation specialist saying how strong Noah's neck was because he was already trying to lift his head at one day old.  I was pretty dang proud that day. That same head lift is about where Noah is still at 7 months later.  Well...it is a bit stronger but still unable to lift up fully and stay that way.  His shoulders slouch forward and he can't sit up straight right now either.

These are all things we are working hard on and devote pretty much all of his therapy time on right now.  He will get there just on his own Noah time and not according to any baby milestone book timeline.  Speaking of which, throw the baby books out now if you haven't done so already.  They will only make you feel sad when you read that your child should have done this or that and in reality they are months behind in that area.  It just saves a lot of grief by tossing them aside and focusing that energy on the therapy for your child :)

Like I said, as of today, Noah is 7 months old and so far he is doing really well considering.  He can sit in a bumbo chair for about 20 minutes as long as I am there to keep my hand behind is head just in case his head decides to snap backwards.  He lifts and sags then lifts again.  This is like neck push-ups in a sense and are really strengthening his head control. We also do as much tummy time as possible bringing his arms underneath him and his hands together so that he is perched on his forearms and has to lift his head.  He hates this one but it is the best one for him.  The yoga ball is the best tool I have found.  Just by putting a blanket on the yoga ball (kind of deflated so it is not rock hard) and then I put Noah on his belly and while holding him securely we move front to back, side to side and Noah's muscles naturally activate to keep balance.  It is a hard workout for him but he is getting better at it weekly.

I am not sure how or when he will be able to grab a foot or sit in a chair or push up on his hands but I know it will come eventually.  He is getting big and my next worry is moving him to a toddler car seat because he still can't sit up so how am I going to take him to a store if he can't sit in a shopping cart?  I guess we will get to that point when the time comes.  

For now I get to have and hold and cuddle my baby for hours on end because he just has this natural physique that loves to curl into my arms and shoulders and snuggle in :) 

I heart snuggles!