Monday, January 21, 2013

A little this... a little that...

Type type type... DELETE.  Type type type... DELETE.  

That's pretty much how this blog has gone.  I WANT to type this update... but for some reason... words escape me.  Or maybe, I don't want to put it out there because I'm just hoping that way it won't be true.  So I type, and then I delete.  I've already typed this much... and said nothing.


Funny thing is - it really isn't all that bad to begin with.  But I feel SO guilty... scheduling a surgery for Dryden after all that he's been through already. The first two, when he was born, were expected.  It didn't make them any easier, but I knew they were coming.  The third, was quite unexpected and shook me up a bit.  This one...  I am scheduling.  Ugh.  

Like I said, it isn't that big a deal - Dryden has to be circumcised.  He couldn't have it done when he was born because of all the other surgeries.  They wouldn't clear him on it until he was healed from the others, but then he had so many problems with his back healing that it was too late to get it done.  Apparently, if it isn't done before the baby is 2 months old, they wait until they are 6 months because they have to put them under anesthesia to do it.  But now they HAVE to do it... and it has been scheduled.  

On top of that - the initial diagnosis that his bladder/kidney function was normal has since changed.  It seems that his bladder is not emptying fully and they are afraid of it refluxing back up into his kidneys.  They have prescribed a medicine called Ditropan that is supposed to help, but we also have to start cathing him once a day to help him empty his bladder.   The doctor said that he is doing it out of more of a precaution at this stage.  But he thinks that if we do this now, he may not have to do it forever.  The thing is, we just don't know.  

I have to admit, this scared me more than anything.  Sometimes, the bladder/bowel nerves are not an issue with Spina Bifida, but more times than not, they are.  I was hoping that Dryden would be one of the lucky ones.  

I read a lot of posts from mothers about their kids having frequent accidents and having to deal with schools who don't understand and cruel kids who don't care to.  It is so hard to be a kid in the first place.  Kids are mean.  Self preservation kicks in and empathy gets kicked to the curb faster than a two-timing boyfriend.  

Tina is in 4th grade now and has been made fun of and bullied pretty much her entire school career up to this point.  It has made her completely insecure about everything and has caused her to pretty much barely pass every year by a thread.  She has NO self confidence.  She can't complete one thing without checking to make sure she did it right.  She needs constant reassurance, but no matter what you do, it just isn't enough for her.  She can get 9 things right and 1 thing wrong, and the second she gets that one thing wrong, she shuts down and thinks she doesn't know how to do it.  She can't take a test to save her life because she freaks out and doubts herself.  I've found notebooks with "I'm stupid" written in the back of them... and it really hurts my heart that she thinks that.  And the only reason she is picked on so much... she is small.  Seriously?  You couldn't find anything better than that?!  But no, she is the smallest kid in the class - always has been - so they target her and push and push and push because they know she won't push back.  

Dryden - 6 months... Tina 9 (almost 10)  I think he's going to be holding her soon...

So, for her to be picked on and bullied this much and to be this affected for a reason so minuscule,  it drives me crazy to think of what kids might say about my little man.    But... I know I'm being a baby and whining.  There are people who have it worse, and are perfectly fine.  I just worry too much lately.  Believe it or not, I used to not be like this.  I used to be the most care-free person I knew.  Now I'm stressed out all the time and worry about everything.  Not the ME I want to be, that's for sure!  But I'm working on that.  :) 

So, now you see why I've been avoiding all of this.  I feel bad promising to keep everyone updated, and then not actually doing so, but I needed to sort this out in my head first.  



On to better and brighter things... Dryden's Healing Helper came in!  I chose a giraffe for Dryden because for some reason, they have always just kinda popped up around him.  One day we reaized he had a LOT of giraffe stuff!  

Dryden's giraffe has a scar (zipper) on his head where his shunt is.  Inside the zipper is a little brain.  :)  He also has a scar (zipper) on his back for the Spina Bifida surgery with a little bone inside that has his name on it ... pictures below.  

Dryden's Healing Helper!!!

I think he likes it!!! 

For those of you who don't know what a Healing Helper is... check them out... 

Or you can look them up on Facebook by typing "Healing Helpers" or by clicking the link below...

Such awesome people and such an amazing thing they are doing for these kids.  



So... I guess that's it for now.  Therapy and doctors ALL WEEK plus a TON of other stuff going on.  Things are getting CRAZYYYYYY around here!!!  

Friday, January 18, 2013

The Chunky Cycle - YES, it's a thing!!

Christmas 2012
Apparently there is a cycle.  The chunky cycle.  This is when your baby is chunky, and doesn't move around because of the chunkiness.  But since he doesn't move around, he can't lose the weight.  So what do you do?

Christmas 2012
Our Physical Therapist says to cut back on his food intake, but I have done the research, talked to his doctor and confirmed... that isn't possible.  I know you wouldn't believe me by looking at him, but ... he gets less than the recommended food intake for his age as it is!  His problem is that he is just not moving much.... and ironically enough, its because his tummy is so big, its hard for him to lay on his tummy and move around!  But - we are working on it.  And I'm sure my chunky baby will even out pretty soon.

He's very proud of those rolls too... 

Rumor has it I was a pretty LARGE baby.  My Grandpa used to call me Michelin because my legs had so many rolls.  My mom called me thunder thighs too... so... he could get it from me.  BJ was a pretty big baby too though... weighing in at a whopping 10 lbs. 9 oz. at birth... so ... maybe he got it from him.  Either way - we both turned out to be pretty scrawny kids and healthy adults.  So, I'm not that worried... 

He made 6 months today... seems like time is just getting away from me.  He's learning so much and getting so big... I just can't believe it!!  


Hopefully next time ... Dryden will have leveled out a little and we won't be worrying about his chunky butt anymore... in the meantime though... parents beware... the chunky cycle is real... and it's looking for YOUR KIDS!!!!