14 months old ~ BIG UPDATES

Madi turned 14 months old last week and there are LOTS of things to update you all on!  There is some good and some bad.........

.........but, let's focus on the good first!

Some amazing things about Madi at the ripe ole' age of 14 months:

~  Consistently pulling herself to stand.  She has been doing this for about a month or so and she LOVES to do it!  Stands up against the couch, ottoman, chair, chalk board, everything really!

~  She is into EVERYTHING!  I can not turn my back for one second and she is causing mischief!  I have tried to mitigate some of it by having a drawer in the kitchen that is full of toys for her to play with but it doesn't always work.  Her ultimate favorite thing to get into is the cat food and cat water!!  She slithers across the kitchen in 2 seconds flat and within 1 second she has a 2 foot radius completely covered in water.  My floors have never been so clean from the constant wiping up of water.

~  As I just said, she slithers.  Or at least I think that's the best way to describe it.  She doesn't crawl on all fours, just army crawls.  But, her army crawl is so wicked fast she looks like a snake slithering across the floor.  I am constantly amazed by how fast she can go!

~  She is a dancing fool!!  She has always loved music but now she is really starting to get the whole "jamming" out thing!  She twists back and forth and bops up and down anytime she hears a glimpse of a song come on.

~  As from the previous post, her sister and her are bonafied "crazy bouncing girls"!

Who can slither the fastest across the floor?!?!

~  We are working on the See and Learn reading program.  It's kind of a slow start because she prefers to just eat the cards, instead of looking at them.

~  She is getting really good at using her pointer finger!  She doesn't necessarily bring her other fingers back but she definitely isolates her finger to use it and point at things.



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I've told you all kinds of amazing things that Madi is doing but unfortunately, we have some new medical issues we are dealing with.  :(

This week, Madi is going under and having a "triple scope" procedure done to learn about her GI tract, lungs, nasal passages and a whole other slew of information.  Well, before we could this, the Aerodigestive Team wanted her to have a Modified Barium Swallow Study done to make sure she is not aspirating.  We have never had any concerns about her aspirating, as she has never had any symptoms of it.

Well, on Friday we discovered Madi is silently aspirating.  I say "silently", because she never even flinched  when the fluid went into her lungs.  She didn't gag, choke, cough......nothing.  She just kept on drinking.

So..........now we get to thicken her liquids to a "Nectar Consistency".

I'm telling ya, it is disgusting.  Her milk now looks like sludge.  I make a day's worth of it in the morning and as I am pouring it into her bottle, it ssllllloooooowwwwllly oozes out and plops into the bottle.  As you can imagine, if she has to suck this thick stuff from the bottle, the time it takes to do that is going to double. The only positive I can see in all of this is that maybe her mouth is going to get really strong because she has to suck so hard!


Why is she aspirating?

Well, it could be 3 different things.  1st:  The reflux could be making everything all irritated and inflamed and could be causing it.  2nd:  She could have something mechanically wrong with how her airways, voice box, and all the different parts in the throat work together when she swallows.  3rd:  The standard response for everything associated with Down syndrome, Low tone.

We will find out some more information this week when we have this procedure done.  They will be able to physically look at all the mechanics of her throat to see if it's that.  If it is, there could possibly be some sort of procedure they can do to fix it.  If it's reflux, getting the reflux under control will help.  And as she grows out of the reflux (hopefully), then the aspirating, in theory, should go away too.  If it's the low tone, well, maybe she will grow out of it, maybe she won't.

I have to admit, I kind of have a bad attitude right now.

I'm angry.

I'm angry that we are dealing with, yet, another thing.

And it's not just a matter of thickening the liquids, it's the fact that they are telling us she can't have popsicles or ice cream.  Why?  Because as it melts, it becomes a "thin liquid" in her mouth and she could aspirate it.  Okay, what's the big deal with not being able to have ice cream?  It is a BIG deal because every child SHOULD be able to have ice cream!!!  That's what being a kid is all about!  Right!?!?  Maybe it's only for a short amount of time, but I am having a hard time seeing that.  I am envisioning her being 8 years old and still thickening her liquids and not being able to have ice cream.

I know, I know......just wait and see what they tell us at the end of the week.  But, that is easier said than done.  I am a person that wants answers now.  Like, right now.

So, enough of the pity party.

Tomorrow I will write another post and share all the details of this triple scope.  It is actually pretty amazing all the things they can do!

We will end on a positive note..............a beautiful picture of my baby girlie!!!!