Wednesday, April 17, 2013


i am always unsure how to help people understand this concept.  i feel like when i respond, i come across as being annoyed.  that's not the case.  so i'm going to try to explain it here.

my little's progress in life is, and will continue to be, much slower than most chidlren's.  learning to eat will not happen in a couple of months.  she may swallow something at one meal, and not again for over a week.  we celebrate the progress, but also know that it doesn't mean that tubes coming out anytime soon.  i cannot count the number of times people ask me how long she will have the tube, when they will take it out, or who ask me every time they see me if she's eating yet.
there is no magic number for losing the tube.  as soon as she can sustain herself with oral feeds, we can lose it.  it's likely going to be a while.  we're working with her.  we're hopeful.  so when you watch this awesomely cute video of our little eating ice cream, it's not because she rocks at eating.  yet.  she didn't really swallow much of what we gave her.  it's just a fun video of her trying cold ice cream, and her reaction.

and when you see this next picture, of shilo rocking therapy, please don't assume that she's on the verge of crawling.  she can't sit up.  still. but she is gaining strength.  and we are super proud of how much she has accomplished in less than a year (since her hospital release).  we think she's an awesome rock star.  even if her progress is a little slower than most kiddos.  and she'll get there.  plus, she brilliant at being able to roll and get into things she's not supposed to.  don't let her lack of physical skills make you think she isn't just as disobedient and ornery as any other seventeen month old.  she's got that down.

supporting herself on her hands and knees (her therapist helped her get there).

don't worry.  i'm pretty sure the world will here our screams when she sits, crawls, walks, and eats.  we're loud cheerers at our house.

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