We Do (almost) Everything You Do

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A comment I frequently see from parents facing the possibility of a feeding tube, or moving to a continuous feed, is “My life is over.”  I promise, it’s not over.  It will just be different. With a little bit of creativity, life keeps moving.  Lyra does everything another child does, some things she just does a little differently.  There are four things to you need to make this work:

  1. A backpack – We have 2 designed for her pump, one we got at Costco and modified (aka cut a hole in it) and a cute one I still have to modify.
  2. A Mommy Hook… all moms need a Mommy Hook.  They are amazing.
  3. Creative thinking
  4. Sense of humor

Now that we have our supplies, it’s time to go out and live life.

WARNING: Not all of these pictures are recent because it’s really hard to keep up with her from behind a camera lense.

Even hooked up to her feed, Lyra crawls around and plays in the living room:

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She climbs up the stairs:

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She goes with me to store and rides in the cart

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She plays with her cousins

She even swings at home and in the park

She rides in the car and in her wagon

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She even goes swimming! …. Yes, that is her pump floating behind her in its own raft.

So life is far from over, it just looks a little different.  You just have to get creative about when you go and what you need while you are there.  Sometimes things work.  Sometimes they don’t (there is a reason she has a towel with her in many of the pictures)! But, once you leave the house you discover that there are lots of other people who have been, or are, in the same boat.

 

 

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