Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Monday, October 8, 2012


Hooray for Fall!  As much of a gung-ho gardener I am in the Spring, by late August, I yearn for cool mornings and evenings.... because I just. don't. want. to water those plants anymore.  In fact, many of them just turn brown from neglect by the middle of September. 

I stopped working for Harry & David, (my favorite store,) in May.  And it near broke my heart.  I loved working there, but we literally had a signs too big to place was at home.  My job is the kids.  And Joel.  I needed to be there to feed him....(a task much bigger than it sounds.)  We worked on feeding therapy all day, everyday.  And worked on building those feeding habits into our everyday lives.  I'm going to be completely honest..... it was exhausting.  I feel like I run a one-man-show of a restaurant sometimes. 

But it worked.  Joel gained A POUND over the Summer.  His 'skills', moving food from side-to-side in his mouth, and getting food from his mouth to a swallow, improved dramatically.  Another giant factor in his summer's weight gain was drinking his calories.  Any dieting adult knows this is a big no-no, but for him, it's crucial.  I'm so glad he finally started loving pediasure. 

The result from this weight gain:  No more bolus feeds.  This last week, Joel ate his daily allotment of calories on his own FOR THE FIRST TIME IN HIS LIFE.  We couldn't be prouder of him.  Writing 'we couldn't be prouder' doesn't even seem to do it justice.  This is major.  Our previous feeding person told us it couldn't be done.....only 'somewhat' set goals for us for September to appease us.  If you know your child is ready to wean off something, stick to your guns.  It's only because of my instinct and persistence (and obviously Joel's hard work) that got us where we are.  They weren't thrilled about taking steps to his recovery on our timeline.  And I'm not trying to pat myself on the back here....because even if you don't have a child with feeding issues, if you have a 2 year old child, do you know how to feed him?  Do you know what he likes, dislikes, is capable of?  Of course you do.  Because you're his mother.  That's in our DNA to just KNOW this stuff.....and somewhere in the land of hospitals and feeding clinics, that knowledge gets lost, or forgotten, and insecurities set in.  Don't be that crazy mom that clinics hate.....I'm not saying to be aggressive....but mommies know how to feed their babies.  You know how to feed your babies, and I did too.

Ok, enough of my soapbox. 

So, the plan is for Joel to keep his feeding tube in until Spring.  Cold and flu season is rapidly approaching....(actually I think it's already here.)  When Joel gets a cold, he immediately gets dehydrated, and goes into his 'safe mode', refusing to eat.  It is our 'safe mode' to have access to his tummy to get him fluids/cals if need be.  Hoping it doesn't come to that, we're ready.  I can't wait for Spring. :) 

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