New Equipment and Therapy Updates

Monday, May 13, 2013

We keep collecting new equipment around here and have yet to let anything go back....with the exception of the apnea monitor (which she ironically aged out of, despite very much still having central and obstructive apnea).  Our latest collection is.....

The walker.

Or a Posterior Posture Control Walker.

Alli trying out her new walker at Carr Rehab in Knoxville. 

We've waited forever.  I mean forever for this thing.  I'm not going to allow myself to dwell in the past.  Ok I do allow myself a few moments here and there. 

I wish we had this thing sooner.  I mean.  A.very.long.time.ago. 

I'm done dwelling. 

She enjoys being able to stand, but she doesn't quiet "get" it yet.  Last Thursday night, she used her walker to walk the length of the hallway and into her room.  BUT, in true Alli fashion, we've yet to get her to do it again. 

I can't figure this kid out. 

Hoping this opens up new freedom for her.  I know she wants  to walk.  And that's the hardest part.  Seeing her body not be able to do something.  Seeing the connections almost being made, but something happens midstream and her body or brain just stops.  My heart aches for her. 

While we journey on, we are so encouraged with her new therapies.  Occupational therapy, speech therapy, aquatic therapy, and she receives an evaluation for a new physical therapy on Wednesday.  She was being seen elsewhere for PT, but the center was way too over stimulating for her.  Overstimulation + being overwhelmed = waste of time

As far as feeding goes.  It's just one of those things I don't like to talk about right now.  Bitterness, sadness, fear can invade me if I think too long.  I remember thinking once Alli's g-tube was placed, "My Mommy instincts will kick in and I'll have this baby eating in NO time."   Nothing more arrogant could ever be spoken.  Nothing. 

Complete arrogance.  And I can say that. 

It's just not that easy.  It just hasn't been the case.  And as time as marched on, it feels as if we get further and further away from our girl eating.  It's so complex, there is not a simple fix, I've learned so much and have so much more to learn.  My patience is running thin, but at the same time God renews me.  Getting Alli to eat has definitely been like David meeting Goliath.  It's HUGE.  Put aside chronic lung disease, pulmonary hypertension, all health issues or future health issues......those have black and white answers (well, most of the time).   Getting this child to eat is not black or white.  Heck, I don't even know it it's grey anymore.  

John and I made the very tough decision to forgo an intensive feeding wean.  All our prayers, research, our common sense, our advice with professionals tell us that it's not beneficial for Alli to undergo the wean at this time.  My heart is completely broken because all I want is for my baby girl to eat (ok and walk and talk too, but you get it).  

The truth is her sensory system and her severe oral aversions and facial defensiveness HAVE to be tackled before a proper wean could ever take place.  We'd be out of our minds crazy to put her through this (especially when insurance will not cover it and the estimated costs are anywhere between $25,000-$75,000 depending on the program).  Oh,'s not medically necessary for a child to eat since she has a g-tube.  I'm not dwelling. 

But we are encouraged.  So so encouraged.  We have an amazing team in place to help tackle her sensory issues and aversions.  And when the time is right, we'll tackle an intensive feeding wean. 

After all, slow and steady wins the race, right?? 

Wouldn't hurt to have her gallop every so often.  :)   


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