Adventures in diaperland and a new best friend!

Lily Update!!

**Notice: This post may contain TMI :)

She is recovering very well from surgery.

However, She has had some major bowel issues since the day after surgery.

And her rash is still there...

She is filling 10-12 diapers a day with diarrhea,

We can't even tell if she is peeing...

Most mornings she has been having blow outs

One Lovely morning I slept in to 9 am!!

I thought she was sleeping in too...

Nope,

She was happily finger-painting herself and her crib with the contents from her diaper.

I was horrified but

My little poo smeared munchkin was soo proud of herself

She was all giggles and smiles.

 Apparently, as I was scrubbing and disinfecting the stinky hand prints

off of her crib I was saying "Oh sick, sick this is so sick"

because Lily started walking in circles

exclaiming in her sweet little cherub voice

"Oh sick, sick sick!!" (giggle) "Sick, sick sick"

while she was trying to take her temperature with our forehead thermometer!

Lol guess I better watch what I say...

Well her diarrhea was not getting better 

She was already on the medicines that are supposed to help,

and they weren't helping

so

We had to put her on gut rest for the third time since the surgery.

Gut rest is when we stop all food and put her on a slow drip of pedialite for 24 hours,

followed by 1/2 strength formula for 24 hours.

(always per Dr's orders of course)

 As soon as we stop the food (every-time) her bowel issues stop,

which gives her a much needed rest 

and a chance to restore electrolytes,

But, its miserable for her and within hours she becomes weak and shaky

 and can no longer even stand. 

On those days we cuddle all day and I am VERY grateful for netflix

We watch all of Lily's favorites

Pocoyo, Wonder Pets, Eebee Baby, etc

Lily sees it as a real treat because

 watching more than 30 minutes of TV is reserved for sick days, IVIG, and hospital stays.

I tried to take her outside

and she enjoys the sunshine and change of scene,

But all she can do is sit :(

and pretty soon she wanted back inside.

Her strength returns within a day or so after getting her back to 

her normal foods.

But so does her diarrhea.

Its not as bad as it was though so maybe it wont get that bad again.

Other than that Lily is doing very well!

(couldn't help putting this pic in here, random yes, but oh so cute!)

And we have a new best friend!!!

The WEIGHTED BLANKET!!!

Thanks to my AMAZING friend Brandis

(You can read about her daughters feeding tube adventures here)

She made this blanket for her daughter Raya, 

but she didn't like it.

So they brought it for Lily to try and

IT IS MAGIC!!!!

It has saved our sanity!!!

Lily now goes to bed at 7:30 every-night and is asleep within minutes!!!

I am no longer desperately trying for Hours to put her to bed!!

I have time to clean!!!

I have time to read!!!

I have time to BLOG!!!

I have time to watch a movie that ISN'T ANIMATED!!!!!!!!! 

AND that's not all folks!!!!

SHE TAKES NAPS!!!!!!!!!

EVERYDAY!!!!!

BUT wait there's more...

We have learned that if we bring the blanket with us everywhere 

It significantly reduces/prevents

meltdowns.

So it can be seen on her lap at the grocery store

or draped over her at church,

or placed strategically over her legs at doctors appointments or therapy.

I just can not express how this has changed our lives.

I am a much happier, more rested mommy,

Lily seems much happier,

and Shaun and I actually get to have time together after she has gone to bed!

Who knew a specially made 3lb blanket could make such a HUGE difference.

Since I am talking about things that make life with a medically complex child easier...

We also got some awesome new button buddies

Button buddies wrap around the g-tube and 

significantly reduce the excess skin buildup, as well as they 

wick away moisture and help prevent infections.

Plus they make an otherwise frightening looking medical device rather cute. :)

I also like them because they are much cheaper than gauze and tape

as they are reusable.

We change them everyday and just throw them in the wash in a delicates bag.

And since this post is kind of a Hodge-podge of randomness

here is an awesome clip of Lily's speaking skills while she is sitting in a box.