Tuesday, March 12, 2013

It's been a little overwhelming over here lately. 

We're beginning the process of transitioning to outpatient therapy services.  Since Alli came home from the NICU, we've been blessed to have a Physical Therapist, Occupational Therapist, Speech Therapist, and Feeding Therapists come to our home each week.  April, RSV season will end and we will be set free. 

Ok, not totally set free.  We still have to be extremely diligent about hand washing and we're still going to be more than careful where we go (sorry Anna Claire, no Chuck E Cheese just yet).  As our pulmonologist said, "We're not out of the woods yet and certainly don't need to trust those lungs of hers,"  If we hear of anything going around, I'm not scared to pull out the big guns and go back on lockdown.

But with all this newness on the horizon, from a life we've never really seen with 3 children, I'm slightly overwhelmed.  Every part of my being wants to celebrate that spring is coming and what that potentially means for our family, but we're plagued with all this new. 

Outpatient Therapies. 

Which direction is right?

Will this program work for my child?

Is this the right approach from a sensory perspective?

Can this person help us make progress with her eating.  A percentage of progress.  We'll take it.

Should we wait until next year for the intensive tube weaning?

Do we seek intensive OT and PT programs out of state?

Will we be putting her health in jeopardy? 

Can we do it all??  (Keep in mind we'll be driving 2-4 hours roundtrip/3 days a week to meet for all of Alli's therapies......and we have two other children who need just has much love and attention....oh, and this also doesn't count continuing to see her specialists every month or every other month).

Is anyone going to be able to "bleeping" fix my baby girl??

But then I look at this picture and realize, "I get to make choices for this girl."  That's me.  I get to do it.  John and I as her parents get that opportunity. 

And while my brain can't.even.remotely.grasp for a single second the 150 directions we're being led on the Who's Who of OT, PT, SLP, Feeding, and Aquatic Therapists in our area. 

Nor can it grasp the countless approaches you will find within each profession. 

I mean for real.  One look at my therapists binder and you would run.

Choosing what is right for our children is never easy.

And what works for one or many, may not work for mine.  And vice versa. 

It hurts to think we may have already missed precious time.  If we choose the wrong therapists, will we miss even more?  Is this even the right direction?  It all makes my head spin.   

We all want to make the right choices for them. 

I know from way too much experience we can beat ourselves up when we feel we've made the wrong ones, especially while dealing with health and development.  Hindsight is always 20/20.

But at the end of the yesterday I looked at this picture. 

And the choices we are having to make are good things. 

We've made the life and death decisions.  We'll take these instead.

It means she's here.  It means we're surviving. 

Still fighting.

But surviving. 

And the last time I checked I know we are still fighters. 

We certainly know she's up for the challenge. 

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