Saturday, March 24, 2012


Lily got together with her Tubie BFF"s last Friday
For a picture shoot.
Raya's Mom Brandis wrote about it on her blog 
And posted the AMAZING pictures she took!

Wednesday, March 7, 2012

A story with a happy ending

It has been a very hard week or weeks actually,
"Logically" other weeks we have had have been worse,
much much worse...
but apparently my emotions don't respond to "logic"
(I am a woman  after-all)

I think it was a LOT of little things all building up.
And the anticipation of what was around the next corner was eating me up...
But, I am getting ahead of myself,
Let me just say now that
 this story has a happy ending! 

Lily has been on the edge of another admission for about two weeks.
 She has had a low grade fever for 2 weeks, 
It only has to raise .2 degrees for them to admit her.
yes that's only point 2 degrees.
Part of me thinks they might as well just admit her now and get it over with
but the other part of me (The larger part) is ECSTATIC 
We aren't there and maybe we wont get there this time...
Plus, that raging infection in her diaper area I wrote about last post
is still spreading,
everyday its creeping further down her legs and up her tummy.
The doctors don't know what to do about it because we are
on the last possible cream they know about to try on it.
If it hasn't significantly improved by Friday its probably an admission.
Shes refusing food more and more.
And shes waking up screaming multiple times a night again.
The past three nights Its taken four hours to get her to bed at night.
Half of which is spent with her screaming and crying,
While I do everything I can to calm her.
She has had FULL BLOWN meltdowns every time we take her anywhere
with lots of people.

So that brings me to yesterday.
One thing after another went wrong.
among about a dozen other things that will stay unmentioned,
we had a feeding therapy appointment which was missed due to
events out of my control,
 followed by an appointment with her
new developmental ped (Who we LOVE)
which we were a half hour late to, also because of
said events out of my control...
So there was a mix up in which doctor Lily was gonna see when we came in.
We saw a nice new doctor, who only fills in for the SN clinic when they are overbooked
She was unfamiliar with most of Lily's diagnosis'
and said she was sending us to the ER for labs and a probable admission.
She told me to wait for a few minutes and she's be back with the paperwork.

I sat there dejected, with tears brimming in my eyes threatening to spill over,
feeling completely overwhelmed and exhausted.

Then a  different doctor came in and said because of the time mix up 
he was actually the doctor we were supposed to see
and so we repeated the appointment with him.
At this point Lily started to perk up.
She started giggling instead of crying and her color was getting better.
This doctor was a little bit more familiar with some of her diagnosis,
and consulted with Lily's actual doctor
and came to the conclusion we could have four more days at home!
Unless her fever rose the .2 degrees of course...
Lily then started talking and kissing everything she could get her hands on
(Including the doctor)
And blowing kisses at everyone who wasn't within actual kissing distance.
She is really more aware than I give her credit for...
This raised my spirits.
I left PCH feeling better,
Lily took a nap on the way home,
which raised my spirits even more.
I went to the pharmacy and got her prescriptions.
As I drove home from the pharmacy,
I was feeling really really good.
I was feeling so capable and content.
In my own prideful way I started to pat myself on my back
And I was thinking how I could handle anything that was thrown my way.
Then I humbled myself as I realised the reason I was feeling so light
was because of the prayers that friends, family and perfect strangers 
are sending our way daily.
I COULD NOT do this without the Lord,
and without all the prayers.
I literally feel them. 
I desperately needed them yesterday and
They lifted me up.
Thank you for your prayers.
Thank you so so so much.
 Lily says "Thank You" too.