Sunday, August 25, 2013

Finally out of the rut...

For quite some time, it seemed like we were stuck.  What Ronan was doing, he was doing well, but it simply seemed like he wasn't doing many new things.  He was occasionally signing, but not using many new signs.  He was doing great sitting and much more confident in that position, but not able to get into sitting.  He was standing, but not moving his feet and Ronan had to work hard to just stand.  Ronan had gained one pound between December of 2012 and July of 2013... 
One pound in eight months!  

Sure there were bits of progress here and there, but no big gains.  We celebrated milestones like learning to put his hand out while he was sitting to steady himself.  Paul and I were doing everything we could to get Ronan to eat and gain weight, with little progress.  We kept wondering what else we could do... what we could do differently...  what we were doing wrong.  I think this is often the trap that a lot of special needs families fall into - the "what else" trap.   We would all do anything and everything to make something just a little easier for our child, but it is a balance.  Ronan cannot and should not be in therapy all day every day.  But, he needs the practice and since Paul and I work, we do what we feel he can handle.  But is that enough?  Does one
of us need to stay home?  Should we start Ronan in the new therapy that we are hearing about in addition to the other seven therapy appointments a week?  Or, maybe we are approaching it from the wrong angle, could it be that he needs time to develop on his own? 

Ronan standing at his cart in PT
These are the types of conversations we have on a weekly basis.  We are constantly researching new techniques and therapies, and trying to balance our learnings with what we are currently doing.  And I know we are not alone in these thoughts...

Much more confident standing!
Maybe it was Ronan's second birthday this month, but he has taken some giant leaps forward.  Here are a few highlights:

Ronan's school has told us that he's signing much more frequently now.  Ronan will asked to be picked up.  He moves to get toys that he wants.  He points to preferred items.  And, he has gotten himself into a sitting position.  TWICE! 

This past week in PT, Ronan was finally able to do wall standing!  He's been doing so great in his
treadmill harness that our therapist has been trying wall standing out without much luck, but last week he decided he could do it.  Ronan isn't always thrilled to practice, but he can do it!  Still no steps, but wall standing is great progress.  Ronan is also much more confident standing at our coffee table or couch.  He can play with toys, and balance with one hand. 

Ronan has also been matching colors and playing matching games.  He's also mimicking me, which he's never done before.  I can make a sound, and have him copy that sound. 

Wall standing!!
And, Ronan has gained a little more than a pound in the last month!  He seemed to increase his calories on his own too, by another 200 - 300 calories a day.  I'm not sure what is driving it, and to be honest, my initial thought was that this may be the first sign that his cardiac function is decreasing again.  It makes me a little sad to have thought of that first, but he doesn't show any other signs of an issue, so I'm going to stack it up to doing and moving more. 

It can be so disconcerting to plateau on many fronts for that length of time.  It really makes a parent question what is wrong, or what could be done differently.  What hurts the most is seeing children who are a year, year and a half younger whiz past where we are.  Everyone says to not compare, but that is easier said than done. 

We are happily celebrating these milestones.  We are so proud of you, Ronan!


1 comment:

  1. I know what you mean about children hitting milestones at different times. Even parents without special needs children are so competitive. I can't stand that. You should celebrate your child's victories and milestones no matter when they hit them. Every child is different and that's ok. We are so proud of you Ronan!! Keep up the hard work!!

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