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Living With a Ventilator

Let me introduce you to my daughter Abby.  She's one sassy girl!  You'd better not do something she doesn't want you to do, or you will hear about it. She can give the evil eye like no one I know, and her face will get bright red before she lets out a huge scream.  Abby's got the angry face down pat! 

But, my girl is also very sweet.  She loves to cuddle and absolutely adores her brother Caleb.  When he is in the room, no one else matters.  Abby loves when Caleb comes up close to her and she loves to try to pull his ears.  She's a big fan of hair-pulling too, by the way!  If you have long hair, look out!

I would have to describe Abby as a Daddy's girl (although she's really a Caleb's girl!).  I definitely come third in the pecking order around here!  She loves her daddy and gets really excited when she hears his voice on the phone or sees him on Skype when he's away on a trip. 

Abby's favorite foods to eat right now are mangos, apples, and bananas. She's got quite a sweet tooth and isn't very interested in eating her veggies.  She'll eat squash fairly well, but pretty much all of the green vegetables are out.  I think she got Matt's taste buds.  She's not fond of cold things and doesn't want any of the cold teethers.

She enjoys playing with her toys and loves things that rattle.  She'll do the "shake, shake, shake" game for a long time!  Her favorite color is red and her eyes will automatically go to whatever is red in the room.  She has a big red ladybug Pillow Pet that she loves to lie down on.  She'll run her fingers through the soft fur!

The girl knows what she likes and doesn't like, that's for sure.  She's got quite a personality.  Yep, she's a typical nine month old...oh yeah, and she's on a ventilator.

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If you're like I was up until about 9 1/2 months ago, when you hear that someone is on a ventilator, you probably think of a person in a vegetative state lying in a hospital bed with the lights dimmed and tubes coming out everywhere.  Do you picture a lot of people crying and mourning a loss?  I know I did.  I thought that being on a ventilator pretty much meant there was no hope for you.  To be honest, I probably felt that way for a few weeks after Abby got her trach.

Well, I certainly hope that by now, you realize that this doesn't describe Abby!!  Time and time again, I've heard people say, "But she looks so healthy!  It's hard to believe she's on a ventilator!"  Now, I know that not all vented kids do as well as Abby does.  Sadly, there are some that fit the description above.  But I think it's cool that Abby can help people to see that you can still be more or less healthy (and sassy) on assistive technology. 

If you're new to my blog and maybe you're heading down this trach/vent journey, understand this:  there is life after a tracheostomy...and a ventilator!  It's just about as good as you make it.  For us, we try to give Abby as many experiences as we can while still keeping her safe and avoiding dangerous germs.  I honestly don't think she would be doing as well as she is if we had a mindset of "Well, she's on a ventilator, so we really can't do that."  Sure, there are some things that really are off-limits for her right now, and there are lots and lots of things that would be a whole lot easier if we didn't have the vent.  But most things are doable if you put your mind to it.

As I've said many times, we feel like God has given us Abby so that we can proclaim His awesomeness and be an encouragement to others in similar situations.  I view my blog as a ministry (and sometimes a therapy for me!) and hope that it encourages others.  If you've been blessed with a baby with special needs (and it IS a blessing, even if you don't see it just yet...just wait!!) and are looking for a friend, email me!!  :)

Comments

john smith said…
wonderful blog about ventilators technology i will share it all my relations.
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