Updates

We got Liv's evaluation back from Elwin and it's a little tough hearing all of the delays that your child has.  As a parent you tend to think they can do more than they actually can.  On a good note, because she is so delayed, she will get many services to help her out.

A couple of days ago Liv got topical staph infection but at least the meds are clearing it up quickly.

She is getting her button changed today because it's been about 3 months.  They said we can do it ourselves, but I'm not ready to see her stomach.  Yuck.  The nurses can change it.

Apparently I was supposed to do a renewal form for Liv's insurance.  The problem is that I've never got one, so I never knew that I was supposed to do that.  Her insurance is terminated as of tomorrow.  I did apply for it again on Tuesday and I'm hoping to get a response soon.  She will be covered and since it's an easy case, I'm just hoping for it to happen quickly.  We made sure we stocked up on meds and supplies quickly before it expires.  Her nursing care will still continue because any expenses that occur during this lapse will be back paid when I get the insurance again.  So I'm very happy that she will still go to medical daycare and have nurses.

Oh the joys of everything we have to go through to make sure Liv gets what she needs and deserves!

A Long Week

I'm so happy that it's Friday.  Liv had a great week and now I'm looking forward to spending the weekend with her.  I took her swimming today after school.  She did really well.  I bought her an inner tube that is small and she was able to keep herself in it without me touching her.  It was great.  She has been walking everywhere.  She never wants to stop.  I wonder how much longer until she walks independently.

This Past Week

On Tuesday, Liv had a swallow test to determine if she aspirates when she swallows.  Liv being a child that barely eats, didn't eat the barium.  Big shocker!  I don't think that it's a test that she will complete any time soon.  On a good note, I took her walker and made her walk the whole time.  CHOP is a big hospital to walk around.
On Wednesday, Liv had an evaluation for Elwin.  They will provide her services when she turns 3.  She was tired, so she didn't show them everything she can do.  That's actually a good thing.  I want her to get as many services as possible.  She did go straight for the baby doll.  I guess it's time to get her some more.  We don't find anything out for 60 days, so the waiting begins.
Liv's friend Abigail had an outdoor birthday party today.  Livy just loves being with her friends.  They had a radio flyer wagon for her to sit in and Blake pushed her around most of the time.  She even put stickers on a tambourine as a party gift.  Everyone is saying that they are seeing a huge change in Olivia with how self sufficient she is getting.

Too Much Attention

I don't know what it is, but lately everyone feels the need to stop us and tell us how beautiful my daughter is or how her hair is just gorgeous.  I admit, my daughter is beautiful.  I just have never felt the need to walk over to someone that I didn't know and tell them how cute their child is.  We even had a modeling agency want us to sign her up.  I mean is everything center around looks?  She's 2.  I really don't want her thinking that she has to look beautiful for people to notice her.  Besides, beauty comes at a cost.
I've also noticed more people staring when she has the walker.  I'm glad she doesn't understand that she's different because it makes me wonder if she would want that kind of attention.  She is getting better with it which means that I will make her use it everywhere we go.  I guess I better prepare myself for the stares.

Still Having Trouble Gaining Weight

Since Liv had that bug a couple of weeks ago, she lost weight.  She hasn't gained it back.  We had to raise the amount of her feeds at night to help.  I hope it's working.  It's always some steps forward and then some back.  I will say that I don't know where I would be without full nights of sleep due to the nurses, especially now that we are both back to work.  It was nice having the summer off, but I think we all craved that routine that we all used to follow. 

Livy is getting better at using her walker.  She definitely can steer it better than she used to.

Next week she has a swallow study and an evaluation for her services.  Even though it's the second week of school, I will be taking 2 full days off.

Livy is missing 2 bottom teeth which is not normal but can be for her condition.  I wonder if she will have permanent teeth.

Insomnia is Finally Over!

So Liv started Trileptal about 3 weeks ago to help with her seizures.  About a week ago we noticed that Liv was having the hardest time sleeping, which meant so did we.  She would just sit and cry.  It was awful.  Yesterday we figured out that it was the meds.  So we took her off of it without a doctor telling us it was ok.  I mean I can't wean her off because I couldn't stay awake for another night.  I was losing it.  So we put her on a back of med just in case and gave her some benedryl to help her sleep.  We figured it out for sure because she napped today and went to sleep at her normal time.  I'm so happy.  I sure was missing sleep.  Well now that we discovered 3 seizure meds give her side effects, I wonder what we will try next.  What a challenge!

The Good, the Bad, and the Happy to be Home

We went to my mom's for 3 days for a visit.  We only make it there once a year due to not wanting to travel far with Olivia.  She lives 3 hours away.  There's only one way to do this - start at the beginning.

Day 1 - The drive wasn't bad and Liv slept through half of it.  We stopped at my gram's to say hello.  We went to my mom's (which is where we were staying) to relax before going out for dinner.  My mom runs a daycare and wanted Olivia to be with her.  I could tell by the way Liv was acting that she needed to have a nap before dinner.  Of course my mom thinks that I just didn't want her to go to the daycare.  If only my mom knew what it was like to be with Liv without a nap and she doesn't nap at daycare.  We went out to dinner with my mom and her boyfriend, grandma and grandpa, and my one sister.  My sister and I haven't been the best of friends lately, so she decided ignoring my whole family would be a great way to make us feel welcomed.  (The reason we aren't that close lately is because she is trying to put her nose in my family business and tell me how to raise my step-daughter.  I didn't agree with her, so she decided to be pissed at me.  I guess my whole family has to suffer from this.  I couldn't imagine being an aunt of a 2 year old and completely ignoring them.)  After dinner, we went back to my mom's to relax then go to bed.  Liv got up several times during the night which made us miss having a nurse so much!

Day 2 - I took Liv downstairs at 6:30 to the daycare so I could sleep a little longer.  I went back down around 8:30 and the children were eating breakfast at table, but Liv was in a high chair off by herself.  My daughter already doesn't eat so putting her away from kids, not the best idea.  I took her upstairs to get ready to go to Knoebels.  We had a great time at the park.  Liv must love park food because she ate way more than I've ever seen.  I took her on a couple of rides.  She won't sit by herself so that limits the amount of rides she can go on.  I was trying to ask the guy at the moon bounce if I could go in with her and he told me that he would get everyone out and let us in there alone.  We had the whole thing to ourselves.  I was almost in tears when he offered.  Liv laughed more than I've ever seen.  She couldn't stand or even sit up, so I bounced close to her to make her move.  I also held her and jumped.  It was so great.  We stayed for a long time so when we went back to my mom's, it was time to put Liv to bed.  Liv hardly slept which meant neither did we.

Day 3 - I took Liv downstairs to the daycare at 8 but she didn't want to stay.  My mom text me about taking Liv to a playground for a little while with the kids from daycare.  I told her that I need to get her ready to go but really I was thinking what the hell is my daughter going to do at a playground?  Just sit there in the grass?  She doesn't walk.  That would be like taking a 6 month old to the playground for an hour and thinking that they are just going to go off and play with the other kids.  We decided to go to the public pool.  It was great when I lived there, but they are now trying to update it to the point that it just sucks and nothing is open.  There wasn't even grass to lay a blanket on.  Like my daughter is going to sit in a lounge chair.  So I walked around the pool and Livy gets stung by a bee in the neck.  Of course I'm scared she's allergic.  Luckily she only broke out in a rash.  I took her back to my mom's.  My mom wants her to stay at the daycare but I want Liv to nap before we leave for the trip home.  If she's really fussy, we couldn't make a 3 hour trip.  I called the developmental ped. to find out how much longer it's going to be until she can get an appointment.  They tell me that they never go the paperwork that I filled out and sent back in May.  She's like why did you wait til now to call.  I said that I was quoted a year and wasn't trying to bother them.  I should have known better.  She is shipping new paperwork and I get to start all over.  Trust me, this time I will call every week.  I was so frustrated and in tears so I just wanted to go home.  By this time, Liv is napping.  We pack everything up and head out.  Last night we slept through the night because we had a nurse!!!!

I wish my mom wouldn't look at it like I'm holding my daughter back from doing things other kids do but that I realize what level she is at and that I do things with her according to her level and not age.  It doesn't mean that I'm hindering her learning.  I try to get my daughter out of the house everyday.  I take her to playgroups and she has tons of therapy.  I guess she won't understand because she lives 3 hours away and doesn't see my work on a daily basis. 

Creating a Will

We put a deadline on ourselves to create a will.  It's the end of the month.  Olivia's insurance company told us that it needed to be done.  We just have so many issues with this.  My family doesn't live in the area so that leaves Drew's sister.  Wow one person.  We have to have back up plans for back up plans for this will.  Drew doesn't want to get non-relatives to take care of Olivia and I don't see how that's feasible.  We need back ups!  It's hard knowing that Olivia might need life-long care, so it is hard to ask people if they would want to be part of the will.  Taking care of Liv entitles lots of appointments between doctors and therapists.  It's a lot to ask a family to do.  I do not think my daughter is a burden, but I could see how she would be to a family that is not hers.  This is very stressful!!!  So pray for us in being able to find solutions to this problem.

Thanks

I wanted to thank all of my readers.  I have reached past 1000 hits!  It's so exciting to know that there are so many of you that find my life interesting enough to read about!

Thanks so much!

The Bug is Finally Gone

Well she had the bug until yesterday.  We had to cancel all plans from Tuesday evening til Friday.  She didn't get to work with therapist.  She didn't get to go to the mall to practice walking.  She didn't get to go to play group.  This upcoming week we will only be here Monday and Tuesday because we will be visiting my family for three days.  She won't get a lot of practice in while we are there.  I don't have a lot of time left to practice with her since we start back at work September 1st.  It's nice taking her to the mall when there's nobody there for her to have lots of room to walk around.  I am going to miss this extra time I have been able to give to her.  Tomorrow is a GI appointment and she lost 1.5 lbs due to being sick.  I know they aren't going to reduce her feedings because of that.  I was really hoping to reduce the daily feedings so she would get hungry and eat food, but I obviously want what's best for her.

My Anniversary

We have learned that anything planned can be altered in a second depending on Olivia.  Tuesday is the day that she goes to daycare and it's our anniversary.  Of course we thought this would be a great time to go out for a nice lunch baby free.  The nurse wakes me up at 5 am to a crib and baby full of poop.  After clean-up, I put her in my bed to go back to sleep.  She threw up all over.  So her dad took her downstairs while I showered, put everything in the wash and remake our beds.  Then Liv got a bath (she smelled so bad!).  Luckily the daycare said they would still take her since it wasn't happening frequently.  So we dropped her off and went to lunch.  At least we were still able to go.  It's hard making plans with a child that can change your direction at the drop of a dime. 

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.

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!

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! 

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!

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

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.

Nursing Help!

Yesterday Livy's insurance company called me to update their information on her health problems.  They didn't have it documented that she has a g tube.  Since she gets overnight continuous feeds, she was approved for 8 hours of nursing care during the night - 7 days a week.  This is going to be such a relief on us.  The milk is only good for 4 hours, so after that, we have to wake up and change the milk.  Not to mention the times she gets up for a binky.  Last night was rough, so I'm super glad that we will be getting help.  Her tube came unplugged and her stomach acid and milk all leaked out onto the crib.  She was so upset.  At least we won't have to worry about this happening anymore.  We will be interviewing nurses next week and then getting it started.  Because she is considered a level 1, she is only allowed to have a registered nurse.  Even better!!  There's always hope!

A Good Month

So for the past month, Liv has been doing well.  It usually works like this.  Bad humps then good.  We just work on surviving the bad ones to make it to the good.  Then we easily forget how hard it was and get slapped with another hard one (really not trying to be sexual). Of course we are enjoying this time.  Liv got a button tube place back in and it's working great this time.  Feeds are great.  She is up to the 7th percentile in weight and we will be discussing what feeding strategy we are going to use when we go to GI on Tuesday.  As some of you have seen, Liv took her first steps this past week.  Yes it was with a medical walker, but it's just like her walking alone.  I can't stop watching the video.  For those who missed it, it's posted on my facebook.  The walker she was using was one at her daycare.  We had her fitted for one and we are just waiting for it to come in.  They said up to 3 months but really don't think it will take that long.  We are getting anxious for it to come in so she can practice all day.  We went swimming yesterday and she was using her float.  She was feeling adventurous and would swim away from us.  It's good to see her getting more confident with swimming.  I would like to get her just a vest this summer so she can really start swimming.  At Liv's endocrinology appointment we found out that she will probably only reach 4'6" so she will need to take growth hormones.  They aren't starting yet because she is a good height for her age now, so we are just seeing what happens.  They will also check her ovaries at the age of 9 to see how damaged they are.  They will then start her on birth control to help her get estrogen and a period.
Summer is almost here and that means lots of time with my baby.  I am going to be taking her all over and tiring her out.  I plan to do something everyday.  She is not just sitting around the house.
Here's to a good month and a future of time off to spend with my baby!!!

Catching Up

So things have been busy because Liv is healthy for once.  I keep busy by playing with her all of the time.  She said mama for the first time yesterday.  She used to call me na na.  My husband and I have been bracing ourselves for her to get tested and the results to say that she is MR.  I'm trying to accept it, but it's hard, she's my only child.  Maybe she just has delays, but I think it's more than that.  She could say about 4 words, but she forgets hi and bye.  She forgot all done but now remembers it.  On a good note, she has been laughing like crazy.  She has been in such great moods.  She laughs all day long.  She loves to watch Mickey Mouse Club House.  She is such a great child.  She is starting to look more like a little girl than a baby.  I hope she starts developing more.  She does have more strength and loves to practice walking.  Next week she has her appointment to get fitted for walking devices.  I hope that will help her have independence by walking herself (with the device).