Chutastic

At this very moment I would say that life at the Chu house is
pretty Chutastic. That means crazy, messy, busy as all get out, full of
laughing and full of love.

So, to get you guys back up to speed, let's start on
Thursday before last. The day Penny had to go to the ER.  Now, everyone
who has come within 3 feet of one of us in the last year knows that we
are trying our hardest to keep from catching any respiratory bug.  Well,
working in a public high school, there is only so much that I can do.
 I think I was doing a pretty good job of keeping my immune system up
until we had a weekend with nursing issues.  I ended up playing the roll
of Penny's nurse most of the weekend which meant that I had to have
someone here to help with Lydia but it also meant the I didn't get to
sleep much at all.  My body took that lack of sleep as its cue to get
sick and so I did.  I also passed it to Penny for which I felt horrible.
She handled it really well for about a week and then on Thursday
morning, thanks to the quick thinking and attuned nurse senses of Kim,
 Penny let us know that she was in fact NOT handling it well.  After
some torturous IV attempts, catheterizations, and X-rays, they found
that it was pneumonia and we had caught it pretty early.  Once Penny got
her IV meds she was feeling good and ready to go! She hasn't stopped
since!

We had a pulmonology appointment already scheduled
for the next day so we went.  He said she looked much better than her
X-ray and that we would wait to wean until the following week.  Well
this Friday was that appointment and we were able to wean her to a rate
of 16!!  He said we should doing trach trials in 2 months! I'm not sure
exactly help trach trials work other than she gets breaks off of the
vent.  Its a good thing too because that little booger has discovered
mobility and LOVES it. She will take off in whatever direction she wants
and it's hard to keep up with her with Royce (the rolling stand)! She will sit down and look at
you like "uh...come on!" We love it.

Miss Lydia is now able to stand by herself.  She
doesn't love to do it if she thinks she can convince you to hold her
hand, but she can do it! She can also now say "apple" and lots and lots
of things in jibberish. She's blowing kisses (when she wants to) and the
cutest addition to her little bag of tricks is saying "uh oh!". I mean
really. There's not much cuter than that! 

With the weather getting nicer we are spending more
and more time outside. The girls absolutely love going outside. Lydia
actually cries when we go in now.  We have played with the dirt, bugs,
grass...they have helped Mah Mah and I weed...they have gotten grass
stains on their jeans...it's awesome.  Really.  There was such joy in my
heart when I realized Penny had grass stains on her jeans from landing
on her booty at the bottom of the slide.  Totally normal :).

We are having their therapies done through Tennessee
Early Intervention Services and LeBonheur Early Intervention And
Development.  The therapists come to the house regularly to work with
each girl and assess what we need to do next.  Every one that comes
seems to be pretty amazed at what the girls are doing.  The
developmental therapist was going to see Lydia every other week but said
that is not necessary considering how well she is doing. Physical
therapy and Speech have both had very positive and hopeful things to say
about Penny's development.  She is still refusing any food but her
bottle especially if you are putting it in her mouth.  Every once in a
while she will willingly open her mouth for food but that is only every once in a
while.  She will pick food up and put it to her mouth but if she gets a
piece in there she spits it out.  This girl comes from a long line of
eaters and I'm just not sure what to do with anyone who doesn't love
food! Fortunately, the therapist said that with time, patience, and
consistency that she doesn't see this being a long term problem for Penny.  Phew! 

Ok, now for the most fun.  Going places!! The
tendency of parents of preemies/vent babies/special kids is to keep
their kids safe at home. For those who choose this path I say "more
power to ya!". Of course there is a certain level of caution that you
have to exercise when you get out, but even with all the caution in the
world, no parent can protect their child from everything.  I am of the
school of thought that kids get colds.  Little people have to be exposed
to them to build immunity to them.  Even those on ventilators.  Actually, while Penny is on the ventilator we have more possible means of dealing with it if anything worse comes from it.   If we keep Penny cooped up and
never let her body fight off a germ, then we are keeping her immune
system weak.  Again, it's not like I'm taking her out to try to get her
sick, but I try not to freak out if she gets a little sniffle.  Just
like the rest of parenting, it's a balance.

So, this week we got out.  Our favorite bake shop
had their 4th birthday this week. I don't think Jonathan or I could
imagine life without Muddy's.  Maybe that's hyperbole, but you get the
point.  The people there are so wonderful and have been so great to us
while we have been going through the hardest year of our lives.  So, we
went to the party! Because they were serving things for free rather than
selling them, there was room behind the counter for the 5 of us.
 Jonathan, me, Lydia, Penny, and Joan.  Not to mention Vennie
Ventilator. He just stayed on my back the whole time with Jacque
 Chusteaux the O2 tank.  We all had a great time.  We even ran into some
of our NICU buddies the Ramsey's.  It was really great to have all of
our babies out in the real world together.  My what a year!

Last but not least, the girls went to their first
concert (not in-utero that is) on Friday night.  The tour that Jonathan
is on came to town and played the FedEx Forum.  He really wanted them to
come and hear him play. I was really hesitant, mostly because Lydia
gets scared at the coffee grinder so I doubted her ability to handle a
rock concert. Especially one that starts at 5 and ends at 11! Boy was I
wrong.  These girls love some loud music! Of course we had ear
protection on them (thanks REILLY band folks!) which they actually wore
willingly.  They were just fascinated with the whole thing. And stayed
that way! I truly expected to only be able to stay a few hours. I kept
saying that we would leave when all three of us were crying.  It never
happened! The only reason we left when we did was that Penny's batteries
were running out! You know you've had a good time when you run Penny's
batteries all the way down! It was really great to have both girls on my
lap and watch their super talented daddy play his heart out.  They are
some blessed little girls.  They got to meet Kari Jobe, Phil Joel ( of
newsboys), all of Newsong, Sanctus Real, Dara McLean, Group One Crew,
and lots of other people who work on the tour.  They were the belles of
the ball.  Especially because they were sitting up on a road case next
to eachother watching and clapping and occasionally head banging.  It
was too cute for words and they were drawing a crowd! Of course most of the adorableness stopped a
soon a video camera  came out but i swear they were dancing! It was so
much fun and I'm so glad that we did it.  I mean, who can say that they had their diaper changed on a road
case of the biggest tour in the country! Chuplicates. That's who.

It's totally rock and roll to have a diaper change on a road case!

Our new favorite family picture

Dinner "on the road"...note the two sacrificed monkeys on the floor

This was before the whole arena was full of screaming fans!

"I'm not sleepy...I'm not sleepy....I don't want to miss anything!" -P

"hey monkey...wake me up if something good happens" -L

Right before Daddy started to play.  I wanted them close in case the fire scared them

The girls and the lovely Dara McLean

"Watch out tupperware...here I come!" -P

"I'm...too sexy for these jammies" -L

meeting of the minds....or running of the bulls...not sure which is more accurate

This was an attempt at taking a picture of Jonathan's girls and his favorite cupcake.  Lydia decided it was her favorite too

plum tuckered out

"the front yard is fuuuunny!" -P

"This flower is delicious!" -L

"surely they don't expect me to eat this! I don't even eat cheerios!" -P

chillin