Sunday, July 31, 2011

Beach Day

We went to Ocean City, NJ yesterday.  Liv isn't a fan of heat.  We took a blow up pool and spent a lot of time filling it up, but it was worth it.  She screamed when I took her in the ocean.  The water in the pool was warm from sitting in the sun.  She spent an hour and a half in the pool.  We went with our church so there were other young kids that joined her.  She had a blast.  To bad she's not a big fan of the beach though.  She has no clue how to play in the sand either, but that's not really a big deal for me.

Thursday, July 28, 2011

On the Move

On Tuesday, Liv stood for her PT all by herself for a couple of seconds.  She also has walked 3 steps to me 2 times now.  Since we got the walker, we have seen a great deal of improvement.  She gets so excited about walking.  I haven't had time to take her to the mall to practice this week, so I might try to go twice next week.  I would love it if she could walk for her 3rd birthday!

Wednesday, July 27, 2011

Recent Appointments

Last week we went to her ophthamology appointment.  He thought everything looked great and we don't have to go back for a year!  We have never been told that before!

Monday I took her to neurology and she is getting started on a second seizure med.  I asked about her obsession with the girl in this one book and the doctor said that it can be a sign of autism but it is common for children with brain dysfunctions.  Her obsession with me is due to her mental age still being 8-10 months and is at that stage that she can't leave mom.  Problem is that we have been in this stage for over a year.  She told me that Liv would probably go to a life skills school rather than special ed.  She also pulled her attending in to see Liv because she has never seen a child with hypomelanosis even thought she has been a doctor for 20 + years.  Her doctor told me the only reason she was diagnosed so quickly is because she was looking up neurological problems and came across hypomelanosis a week before she ended up in the ER.  Where would we be if she looked that up a week after?

Today we went to the feeding clinic to get some suggestions of feeding Liv.  She obviously has many issues but they only gave a 2 suggestions to work on daily for 6 weeks.  At least we won't get overwhelmed.  But it is making me see that this is going to be a really long process! 

Monday, July 18, 2011

A Rough Weekend

On Saturday I went to a wedding while my mother watched Olivia.  We had a new nurse coming for the night which made me nervous.  We got home around 10:30 and Liv was asleep.  The nurse kept mentioning that Liv has a runny nose.  I go to bed and Liv's cries wake me up at 4.  The nurse keeps talking about her runny nose and refused to give her a binky.  I looked at her stomach and noticed her gtube was leaking fluid.  I said something and the nurse was still trying to wipe her nose.  She said that she should suction it.  I told her to never do that at night.  So I ask her to go get tylenol and she brings me the childrens and adults.  At least she brought the childrens.  We decided to take her to the ER and the nurse was still following me trying to wipe her nose.  I signed her papers and told her to leave.  I called the agency and told them that she isn't to come her again!!

She had 2 seizures today.  It's been awhile since the last one.  This time they both lasted longer than 5 minutes.  At least we didn't have to go back to the ER.  Two days in a row would be too much!

Saturday, July 16, 2011

Church Awaits

Next Sunday I will be joining Circle of Hope.  I have to tell my story that day about how I found Christ.  In order to keep from crying, I decided to write it in a poem.  Here it is!

I was born in California
To my mom and dad
I thought everything was great
But to my surprise it was bad

The abuse that he showed me
I had to be strong
But he left me wondering
Did I do something wrong?

At the age of five
He left out the door
Even though it was my birthday
I would see him no more

My mom got remarried
And he adopted me
He's loving and caring
I was happy as can be

Two years go by
And a sister comes along
It's what I've always wanted
To have a friend lifelong

Church becomes our Sunday routine
Believing in God
And the love that he brings

At Church it was always
The same old thing
Sit down, stand up
And sing, sing, sing

High school comes along
And questions start to arise
Should I really believe in that Big Guy?

At the Christian school
The kids were mean
I wondered if this was even my scene

There really was no help
When the teachers couldn't answer
The questions I yelped

Another sister comes along
Someone for me to adore
To love and hold
But she became a chore

My parent wanted to get a divorce
Leaving me in charge of this course

So out the door my mom went
Leaving without even asking my consent

My baby sister needed to be cared for
So when she cried at night
It was on my bed
That she snored

Mornings were rough
When you are up at two
I still went to school
What else could I do?

My mom got a place for us to go
But sister # 1 would not show
For she was invited to live with her dad
But me and my other sister
He would not have

My dad and his family never called
And once again I'm alone
And feeling appalled

How can two dads walk out on me
To love someone should last an eternity
But that's just not how this is going to be

I started to rebel
And do the wrong things
I hated my life
Because not even my Lord would pull some strings

I felt all alone
With a great big void
So I turned to boys
To help me self destroy

In college the partying was too much
A drink here, a drink there
It became a great crutch

The hole was almost filled
With boys and booze
But no matter how much
That emptiness still had a fuse

Along comes this guy who likes me
We get along great
How can this be?

We grow close to each other
And I knew I couldn't ever love another

It's been four months
We find a great house
I'm so excited to live
With my soon to be spouse

Four more months go by
And the wedding bells chime
Finally someone that's all mine

Soon to follow
Was our baby to be
Will that void be gone?
We'll have to wait and see

Some complications during
Pregnancy arise
But we have high hopes
For our little special surprise

Out she came
Early in the morning
She was quickly removed
And we were mourning

So at the hospital
She would stay
It was very hard to have my baby
So far away

Eleven days goes by
And she comes home
And all we can say is
Shalom

Six months goes by
And she became limp and awry

So in the ambulance we go
And the fear sets in
No matter what is said
I cannot lift my chin

We stay overnight
And wait for the bad news
My daughter had seizures
While I caught the blues

Again I feel failed
She was diagnosed and I cry
There was no way
To have a dry eye

Oh whoa is me
I begin to feel
That God above
Was just no big deal

Much more happens
While time goes on
I begin to feel slightly withdrawn

I ache for my love
Who is in so much pain
Can't God just
Fix her little brain?

Oh that's right
I didn't believe
Which is why I still
Continued to grieve

A neighbor tries to help me out
A moms group for me
Without a doubt

I needed support and love for strength
But the problem was I needed a long length

When they started to pray
I didn't know what was going on
All I could think about was being gone

Then they wanted to know all about me
So I told them everything that I see

My daughter's unhealthy
And delayed in every way
But they still all wanted me to stay

The love and sorrow
That I saw in their eyes
Was something that
They could not disguise

Week after week
I attended cell
Trying to see
If it would help me get well

There's only one way
To fix this spell
And it was to love Jesus
And to love him well

The hospital trips were still tough
But I prayed in the Chapel
Without a puff

There was strength starting to grow in me
For I found a love that's true as can be

God was on my side all along
He just needed me to listen to his song

The girls got me started
Along this path
So I came to the AMPMs
And never looked back

To my surprise
There's even more of the same
Everyone loved
The fact that we came

All of you have showed me love
And so has the Man up above

For my daughter was made special for me
To help complete my family

Friday, July 1, 2011

A Wonderful Life

Everything has been going so well.   I mean I did take Liv to the ER this week for that stupid rash that keeps reappearing, but it's just been a good, healthy time.  Liv got her walker and walks in the house.  She gets tired quickly, but we always practice.  The nursing is working out well too!  Well it's summer now and I'm trying to keep Liv busy.  We are going to try to get out everyday.  I think we've missed 2 so far.  I guess I should make plans for tomorrow.  Maybe swimming.  She loves it.  I'm hoping things continue in this direction.  We needed a break from the chaos.  I have some pics that I need to post, so I will hopefully get them up in the next couple of days.