A New Year and Off to a Great Start!!!!!!!!!!!!

This picture was taken last year after surgery

We are back!

It has been a little over a year since
Lilly had surgery for Arnold Chiari
The end of December she had her check up
and MRI with her neurosurgeon and she
was cleared for a year! I cannot tell you the
joy that news brought to our family!!
Amazing news and the
best way to start off 2011!
GOD IS GOOD!!!!!!!!!!!

We just want to say something
to all of our amazing friends,
(some which we have never met but hold you close to our heart)
for all the prayers that were said
for Lilly and for our family,
dinners, playdates for Emma and your
heart felt contributions to
Lollipops for Lilly last year.

Also for your continued prayers and concern
we want to say thank you from the bottom of our hearts!

Along with our faith you
all helped us get through the
most stressful time our
family has ever gone through!!!

We were are truly blessed and will
forever be greatful for everyones help!

Lilly is doing awesome now!
She is going to school and has
overcome so many obstacles since surgery!

Emma is doing well too!
She is half way through first grade
She has had a fun year this year she
is learning to play the violin....

Will post again later just wanted to give a quick update!

Here is just a little of what has been going on....

Here is just a little of what
has been going on with us!
We have been busy and now I am
back to my blog

I started back to work
and it has been hard hard
for me to leave my precious Lillybeana!
Emma is in school the hours I work
so she doesnt really miss me :)

The good thing is it is part time
just 3 days 9 to 2 so I still pick
them up and come home and have the
afternoon with both of my girls.

These pictures were taken over Easter!
Some of my favorites!

The bunnies belong to Sam
and my girls are in love with them....

As you can see in the picture of Lilly
with the Easter bunny she is not to crazy
about the Easter bunny. On Easter morning
after the bunny came and left eggs and a basket
full of goodies she then realized oh wow that
bunny is fun!

Lilly is doing awesome!
She has had some weird
things going on with her arms
but we are charting and go back
to the neurosurgeon soon.

Lilly is doing well!

Lilly had her check up
with her neurosurgeon last
week and it went well!

Lilly was screaming
when we drove in the parking
lot to Texas Children's
saying NO MOMMY! NO MOMMY!
Her Dr. has nick named
her poopsie
He walked in and said
HI POOPSIE!
She wanted nothing to do
with him and was hysterical.
he even offered her a penny
if she would walk over to
him and say hi!

At first she was not falling for this.....

By the end of the visit
when she realized
he wasn't going to poke on
her or give shots or take
blood

She walked over and got
the penny!

We walked out and I said
YAY!
Lilly guess what you get to go
to the park and ballet now!
Whoo Hoo!

The Dr. released her to do
activities the only limitations
she will have are no
Gymnastics, Soccer
and Trampoline
that will be for the rest
of her life but we can
avoid those it wont be that
big of a deal!

Lilly is doing so well..
I cannot tell you how thankful
we are that she has recovered so
well and quick....kids are so RESILIENT!

Thanks again for all of your prayers and continued support!

Conquer Chiari Walk Across America~Save the Date!

So excited today to
tell you all about the
Conquer Chiari Walk Across America WALK

This is so awesome and I am
so excited to be a part of
getting the Houston/Galveston
walk organized.

We dont have all the details yet but
the National date is Septemeber 18, 2010
we will have location and time to be
announced at a later time.

Since Lilly was diagnosed with Arnold Chiari
I have really wanted to get the word out about
her condition to help others.


I feel this is my way to help my daughter and
help all of those who suffer with Chiari

Hope that when we have a time and location
set that you will all join us in this walk!

It will be between Houston and Galveston
we are trying to target all the areas around
both cities.


Also just an update on Lilly....
She has been recovering awesome
yesterday afternoon she ended up
with a stomach bug that her sister
had this weekend.

Last night was rough she was screaming
every time she got sick saying her
head was hurting!
When babies hurt mommies hurt!

This is just a bump in the road
I know is soon as she gets passed
we will continue to move forward
because she has been doing really well

One more thing!
PLEASE CONTINUE TO PRAY FOR
LAYLA GRACE AND HER FAMILY!
THIS PRECIOUS BABY NEEDS
OUR PRAYERS!!

PLEASE SAY LOTS OF PRAYERS FOR LAYLA GRACE TODAY!

Please pray for this family that
God may bless this family with a
miracle!

This sweet little angel is so young!

I have complete faith that
God can heal this baby girl
and hoping and praying
that she is not in anymore
pain and that she is completely
healed!

Please join me in saying lots of prayers

for this precious little girl

Her mommy and daddy and two sisters

Here is her story www.laylagrace.org

We need to count our BLESSINGS
EVERY MINUTE OF EVERY DAY!

Thank you for your prayers for this sweet baby girl!

A Silly Lilly Today!

Had a wonderful afternoon with
NeNe and PawPaw, even though Em
was sick she enjoyed them being here.

Our little clown Lilly
was cracking us up today!
I think she has turned the corner.

She has been so happy all day!
So sweet, giving us lots of hugs and snuggies (snuggles)
Playing and coloring and non-stop chatter!

Oh how I love the sound
of her happy chatter!!!

She has been pretty entertaining today
She went up to Em and said sissy feel better
I love you so much and dont want you to be sick!
I need you to feel better K?

Her next words were

"sissy that toothfairy needs to come,
and get out your snaggy toof (tooth), I dont
like that snaggy toof (tooth)!
You just had a snaggy toof last time and now
dares another one"!

She said this so serious and it was so funny!

We have welcomed her silliness and humor!
LOVE IT! LOVE IT! LOVE IT!

Emma even laughed when Lilly was talking
to her about her snaggy toof!

Emma is doing a little better she has not been
sick since noon Zofran has helped.
Not eating yet but was able to keep sprite down
this afternoon.

Hoping tomorrow she is feeling lots better
Don't like when my babies are sick!!

Thank you for your continued prayers
We are truly blessed and count our blessings
every min of the day!

We need a break from being SICK

Ok I am thinking that we should
have a break from being sick in
our house!

Last night we went to dinner because
we got a gift card to our favorite
Mexican Restaurant
Lilly was feeling ok and having
cabin fever.
We thought we will go and see.
Lilly was doing great dancing to
the music, telling us "This is some
Great Music" we were cracking up!

Then I looked over at my Em and she
said mommy I feel really really sick!

She looked bad.....
So luckly Andy and I drove separate
cars

I took Emma and left and Lilly and Daddy
waited and got the food to go.

The min we walked in Em threw up and has
been throwing up all night long!

She could not sleep and
was awake until 7:00 am.
The Dr just called in Zofran
so hopefully that will help!

Emma has literally been sick
since Lilly had her surgery.
Not with a stomach bug but other stuff.

Prayers for my Emma that she feels better
and that Lilly doesnt get this.

Lilly is doing really well!
We go back to Dr. Dauser on Tues
for her check up and hopefully
she will be released for some
activities.


My sweet hubby is not home alot these
days. He has a full time job but also is one
the Varsity Baseball Coaches at
Episcopal High School (where he went to school)

Yesterday EHS played Bellaire (where I went)
I supported my husband by routing for EHS!
Bellaire won! Not good, but his team he said
played well there were just some errors.
My hubby works so hard and he is so blessed
that he coaches. If you know my husband you
know that his passion is BASEBALL. Played his
whole life and some in college. He is blessed to be
able to coach and help these kids. He is great coach!

NeNe (MOM) and PawPaw are coming in today!
Thank goodness!!!!!!!
I have been doing ok with running on empty
but yesterday I hit a wall of exhaustion
I didnt know existed! Being in and out of
the hospital with Lilly and Emma being
sick has finally caught up with me.


Thank you for your continued
prayers for our family!

Spring Cleaning

I have been working on organizing and spring cleaning.
It is a lot of work, but worth it!

Jill is having a big sale in Zingo Tots!
Since we share The Other Side of the Moon, we are having a big sale there too!
Read the details here!

Lilly continues to get better every day.
We have a follow up appointment on Tuesday with her surgeon.
Looking forward to full recovery so she can return to her normal activities.
She is ready to hit the ballet studio!

Spending Time With Emma

Yesterday afternoon I spent the whole entire afternoon with my Em.
She has been acting out since all of this with Lilly has gone on.
So I decided we were going to escape and have a mommy and Em day. Emma and I both needed to get out of the house and spend time with just us.

Emma has been through alot with all of this and all of our attention
was shifted to Lilly. She has had attention from our family and friends but
when it comes right down to it, its not mommy or daddy.

Yesterday we left the house at 12:30 and came back at 6:30! We had an awesome day just the two of us and she was my sweet Emma again! She just needed some one on one time and I was so happy that I was able to leave and have fun with her!

Lilly is doing better each day.
Today she has been crying and saying her legs hurt.
Hmmmmm....
Called the dr. and he said well it may just be that she is weak from being in and out
of the hospital and now that she is moving around more she tires more easily.

Hopefully she will be ok and that is all that it is!

Once again I want to thank you for your continued prayers and support for our family.

Faith has gotten us through this entire thing and I dont think we could have been as strong as we have been if we did not have faith!

Today was a GOOD DAY

Lilly had a really good day today!
YAY!
Each day is a major improvement!!!
I can already tell that the surgery has worked
some of the symptoms already are gone!!!


Lilly and Mommy had fun spending it with two of our favorite friends!
As you can see she is fast asleep after a long day of playing at home

Our little Emma girl is off to have a fun sleep over with her very best friend Lexi.
Mommy was sad to see her go because I am missing her!
I feel like we havent spent a lot of time with her with all that has gone on lately, she needed to have some fun!

She was a little torn in making her decision....
my father in law is in town and he told her
they could watch movies and eat THIN MINTS!
Last night she said mommy I just dont know what to do....
MOMMY I want to eat thin mints but I want to go to Lexis too!
Lexi won over Thin Mints & Stevie Daddy (my husbands Dad)

We want to thank you all for your PRAYERS and continued support!
YOU ALL ARE AMAZING!
THANK YOU FROM THE BOTTOM OF OUR HEARTS!

We are home from the hospital and so very happy!!!

Yay we are home at last and hoping to stay here!

Lilly was readmitted Tuesday afternoon because of high fever
we finally got released last night at 7:30 pm.
The neursurgeon came back in last night and I begged them to release us!
He said Lilly has normal post op fluid on the back of her head but that her
mastoid cavity is full of fluid and buldging. That is the sinus cavity behind your ear. They did say she needed tubes because the fluid is not draining right.
Lilly had so many ear infections her first two years. Then we have only had one and now this cavity that is full. So I think we might let the medicine work and sit on another surgery for a while. She has been through so much the past 6 weeks that she needs a break!

She is on antibiotics, tylenol and motrin, we are hoping soon her little personality will be back to normal

Her sissy Emma is really sick today she stayed home from school. Emma has been through alot with all of this too. Not understanding what is going on, and why mommmy and daddy and her sissy are in and out of the hospital

I am giving them both lots of snuggles and love today.


We are staying in the house another 2 weeks to keep Lilly well. Then hope to return to our normal routine. Lillys routine being still restricted a bit but soon the Straub house will be back to normal

Thanks for all your prayers and everything you all have done for our family.

Lilly Enlightenments - Tuesday Mid-Morning

I told you I was going to use the thesaurus to come up with a new word for update!
With all of these options, you may never read the word UPDATE on this blog again!
Yay!

Main Entry: brief
Part of Speech: verb
Definition: inform of facts
Synonyms:
abridge, advise, apprise, edify, enlighten, epitomize, explain, fill in, give rundown, give the lowdown, inform, initiate, instruct, let in on, orient, prepare, prime, recapitulate, show the lay of the land, show the ropes, summarize, tip off, update
Antonyms:
hide, secret

So....I just talked to Lilly's mom, Shelly.
Another doctor came in and told them the CT showed the incision area and the brain to be clear.
However, there was a large collection of fluid located behind the ear, at the back of the head.
He is calling Lilly's pediatrician so that antibiotics can be prescribed - and Lilly is going home this afternoon!
WONDERFUL NEWS!

I just googled "Fluid behind the ears" and read it can be caused by allergies. It makes the person have bad headaches, tenderness behind the ear, and a drunk/dizzy feeling.
Poor Lilly.
She was already having all of those symptoms from her brain surgery!

We are all just so happy that there is no infection related to her procedure.
More enlightenments to be posted as they occur!

Update - Tuesday Morning

I am going to get my thesaurus out later and look up an alternate word for "update!" I feel like I have been saying it over and over for weeks and I need some variety!

Late last night, Lilly had a CT scan of her brain...
She also had a bunch of lab work done...

I talked to her dad this morning around 8:30. He said the doctor came in at 5:45am and told them the CT scan was CLEAR!
Thank, God.
No info on the blood work yet.

The fever has left the building.
No news on release date/time.
They want to continue observing Lilly Bug for awhile.

More news will be posted as I get it.
Jill

Lilly is Back in the Hospital

...written by Jill on behalf of Shelly...

I just posted the "Final Lilly Update" for Zingo Tots blog yesterday.
Sadly, there is another entry.
Lilly woke up with a fever this morning. Although mom gave her Tylenol several times today, the fever kept rising. She also started vomiting.
They took her to the ER with a 103 temp.
Lilly was admitted.
All the IV's were reinserted.
Blood was drawn.
A CT of the brain performed.

Lilly is NOT a happy girl.
She curled up into her momma and said, "NO MOMMY, NO MORE DOCTORS!"
My heart aches for this family.
Just when things were looking good with increased balance and endurance....

We are saying big, giant prayers that there is no infection in the brain...and that is what the doctors are trying to rule out tonight. So, please take a moment and say some prayers for her as well.

Lilly has a fever today.........

Lilly did not have the best of nights last night woke up several times and just wasnt comfortable. She has been really quite all morning and not wanting to play. I have been giving her tylenol for pain. I just took her temp 30 min ago and she has a 101 that is 2 hours after the tylenol! I have paged the Dr and waiting for them to call back. She doesn't show any symptoms other than rosey cheeks and not herself.

Lilly Gets Better Everyday!

Lilly has been home since Monday afternoon (that is when the first picture was taken). Each day she seems to be getting better and better. When we left she was not walking well. She was walking with her shoulders pulled up to her ears because I sure she was uncomforable and in pain.
Now Lilly is walking great! From time to time a little off balance but that is to be expected.

It is amazing to me how resillent children are. I know if I would have had this same surgery I would still be in bed!

She has been playing and had special visits from her best little pal Cam Cam. Although she has had some rough nights, gets tired easily and is in pain after playing I think overall she is doing great!

The hardest part right now is that Lilly wants to do everything and she is limited for awhile. We are not really supposed to take her out for atleast 2 weeks because they dont want her to get an infection. So she is going a little stir crazy but her sissy and Cam have made that a little easier for her. You can see Lilly has figured out if she takes her pillow to play she is comfortable. She has a froggy pillow and a pink pillow that go everywhere she goes.


We just want to thank everyone for praying for Lilly and our family and for your kindness and support. We could not have made it through all of this without you.

Six Days Post Op

This is Jill....writing for Shelly.
She is learning her way around a blog and will be posting as soon as she is capable and has the time.
She wants you all to know that she is so thankful for her friends, family, and folks she's never met.
You guys have made the entire experience with Lilly more bearable.
Your thoughts, notes, prayers, and donations have been such a blessing for their entire family.
So, thank you.

Lilly is doing very well.
She is turning her head a little more each day.
She is 3. Full of energy.
So, she wants to go, go, go....but she does have limitations.
She can not understand all of that and it makes her a little angry sometimes!
She wants to run, climb and jump!
One of her fave activities right now is riding around in her pink car. Mommy put a big, pink, fluffy pillow in behind her head so that she is safe & cozy.

She is walking on her own and has started eating a little more.
She is still a little wobbly at times, but has greatly improved.

Her pain is still being managed with Tylenol.
She has to take a dose every four hours....and Shelly says she can tell by Lilly's behavior when it is time to give the next dose. Pain stinks....especially when it is in the neck and you are 3 years old.

Lilly goes in for a follow up with her surgeon next Tuesday.
Until then, she has orders to lay low for 2 weeks ... and stay at home.

SO, that is the update for now!!!
More to follow!!!

Best Birthday Gift Ever

Guess who got the best birthday gift, today?
Lilly's Daddy...thats who!

Lilly came home from the hospital after a long, long stay.
She got home around 4pm and was oh so happy!

We all are!
She is still weak, tired, and not totally sturdy when she walks...but they think that as the medication gets out of her system & she gains strength, she will do better.

Pictures of sweet Lilly Bug at home will follow....
For now, the Straubs are catching up on some much needed rest & family time!

Post-Op Updates

Lilly was suppose to come home on Saturday.

She is still in the hospital.

Lilly needs to be able to stand on her own and walk before she can be released.

She has not done that yet.

She did start moving her head around a little bit more today.

Her scar is about 2 inches and is mostly on the back of the neck.

It does reach up into her hair and they had to shave just a little bit.

Her neck is very sore.

The doctors took her off of morphine today and are attempting to control her pain with Tylenol. Poor baby. Her neck really does hurt.

Lilly has been rooming with 2 very special people who are giving her tons of love and attention. Her mommy & her nene! These two gals have sat for so long, they are going numb...but neither of them would have it any other way!

Today, the nurse informed Lilly's family that she can have visitors from other children!

There are three kids in particular who have been WAITING to see Lilly & give her hugs & kisses!

All three kids arrived at the hospital at about the same time!

1. Emma - big sister

2. Garrett - cute cousin

3. Cameron - sweet friend

Lilly perked up during her visit! She played a board game with Cameron.

She did art with her sister.

She played with a cute frog that Garrett brought her.

She ate a happy meal with all of them!After her meal, she took a wagon ride with Cameron.

They went to the private nurse's kitchen....

for Popsicles!

Yum!

When it was time for Cameron to go home, Lilly insisted on riding the elevator down with her.

After getting approval...that is just what she did.

When we were all in the lobby waiting for the car to be pulled around, Lilly tried walking all over the place...and even climbed onto several wooden animals.

Although she was very wobbly and unstable {Mom was holding her under her arms the entire time}, it was her first attempt at ambulating w/o being forced. YAY!

Please keep praying that Lilly will grow stronger and stronger.

That she will stand tall & steady.

That she will walk on her own...soon.

Everyone is READY to get out of that hospital room!

{However, everyone is VERY impressed with the hospital, the nurses & the doctors. The care they are receiving is impeccable!}

Lilly's Surgery

Lilly had her surgery on Thursday morning.

We arrived at the hospital at 6am and the surgery began just after 8am.Prior to going back, she was able to play in the "holding dock" for about an hour.

There were tons of toy cars there.

Lilly tested every...single...car!So cute!

Lilly had TONS of family & friends there to support her, Momma & Daddy.

Lots of love.

Just after 10am, Lilly's surgeon called her parents in and told them everything went smoothly & she would be discharged on Saturday.

When Lilly woke up, she wanted to know "what is all this stuff all over me!?!"

Her mom & dad told her the tubes and wires would help the doctors & nurses take care of her through the night.

She looked at them with one of those looks ONLY Lilly can give...and said, "I am NOT sleepin' here all night! Take me home!"

She then had half a Popsicle and was taken to her own private room around 4pm.