Memories and Flowers

I was  getting ready to post an update when a blog post caught my eye. Grace’s journey with CDH posted on their blog about being asked “What memory do you have of your child that stands out for you the most. It may be a positive or negative memory. When you think of your child what is the first memory that comes to your mind?”

When I think of my first memory of Lanie, I think of the day she was born. Justin and I were in the OR because I was having a C-Section. Suddenly I hear her sweet cry and I start crying. They bring her over to us all wrapped up in a blanket and wearing a beanie to keep her head warm. They handed her over to me to hold and look at in the midst of finishing the C-Section. She immediately looked at me and stopped crying, then closed her eyes and fell asleep. My arms started to feel weak and I think the anesthesiologist realized this as well because we both asked Justin to take her before I came too weak and dropped her. He happily held her close and smiled at her with pride. Our first family picture was taken in the OR with Lanie in my arms and Justin smiling proudly at the camera. Our first day together was amazing and I feel in perfect sync with her needs and stepping into the mommy role.

My first memory of Liam is tramatic to say the least. When I finally got to lay eyes on his at 8 hours old he was sedated and hooked to so many tubes. They were getting ready to transport him to UCSF, 4 hours away. That memory will forever be ingrained in my mind and has changed me forever. Liam’s fight for life taught me to live each day to the most and to enjoy everything I do. It taught me that I can make a difference sharing our story and spreading awareness, something I will do for the rest of my life because of him.

My days are extremely busy. I’ve been working so much lately, and when I’m home I’m busy spending time with my kids and husband trying to make as many memories as I can before they’ve outgrown giggle, and being chased by the tickle monster. Before they trade in books and cuddles for cell phones and ipods. Time doesn’t stand still and neither do my precious babies.

I love working. It’s been so much fun getting out and meeting new people and trying to raise to the goals others have set for me. Coming home to two smiling children greeting me at the door with hugs, kisses, giggles and stories about their day has been amazing. Granted, I get even less sleep than I did before now that I can’t make it up during the day, but coming home to their energy is almost like an energy drink.

Liam has been eating so much by mouth! He gets all his tube feeds but still wants to eat and eat and eat. Tonight he ate probably half a cup of meat in spaghetti sauce for dinner alone. 30 min prior to that he ate ¼ cup of meat loaf from last nights dinner. That’s not even breakfast and lunch! Tonight he kept making whinning noises while I ate even though I was giving him bites so I told him to use his words. So he decided to say “Give me a bite”. WOWZA! 

Tonight  we read Robin Hood and Liam decided he wasn’t interested so he left me and Lanie hanging as we walked away to play. It was pretty funny.

Miss Lanie has shown a lot of creativeness. Shes officially crafty like her momma. She watched me make 1 felt rosette flower and asked if she could make one too. I cut out the material and 2 minutes later there sat a perfect rosette in her little hand! I just staired at her hand in utter shock. After I took and and glued it so it wouldn’t unravel, I sat it next to the one I made. Guess whose turned out better? LANIE’S!! She is now my little rosette princess! She ended up making her very own headband filled with rosettes in different colors. All I did was glue everything because she can’t handle a hot glue gun. She wants to learn how I make my other flowers now so next day off Lanie will be getting another lesson in flowers. 

Cartoons And Snuggles

Today was my day off.

I enjoyed shopping with my boys,

Justin and Liam,

while Lanie was at school.

Lanie,

Liam,

and I snuggled up to watch cartoons this afternoon.

We watched

'The Smurfs The Legend of SmurfyHallow'

It was short,

but Liam sat through the whole thing.

This evening we all went for a walk as a family.

It was fun to get out for no particular reason but to walk.

We actually miss SF for that reason.

Pumpkin Theif

October 16th 2013

(Playing catch up here)

We woke up to one of the kid's pumkin's being stolen.

Lanie noticed it as we were leaving to take her to school.

She was so broken hearted and upset that it broke out hearts.

Both Lanie and Liam's pumpkins were pretty big.

Lanie had decorated hers the day we brought it home.

Liam's however hadn't been decorative yet,

so they took it.

In fact just the night before,

I dug out the decoration for his pumpkin to put on.

There were bicycle tire tracks in the yard.

We found the broken off stem in the rock bed,

and pumpkin residue on the bricks from where the pumpkin fell

when they picked it up by the stem.

Seriously,

WHO STEALS A KID'S PUMPKIN?!

WHO RIDES A BIKE TO STEAL A PUMPKIN?!

Anyhow.

After we dropped Lanie off at school,

we went to replace the stolen pumpkin.

We wanted her to come home and see it and be happy again.

She is so protective of Liam.

Atleast we're convincing ourselves of that

after her outpouring of emotions.

After replacing the stolen pumpkin with one slightly bigger,

we went on search for a HUGE fairy tale pumpkin.

Not only could we NOT find any fairy tale pumpkins,

but we couldn't find any HUGE pumpkins.

After giving up the search

and being irritated that someone would steal a pumpkin

and seeing Lanie so upset,

we had to come up with a way to keep this from happening again.

Justin drilled holes through the stems,

then chained them up to the post on the porch.

The stems hardened around the metal chain stuff

making it extremely to take them.

The only way would be to break off the stems.

We understand that if they really want to steal,

they will find a way.

But this is a detourant.

We noticed the neighborhood hoodlums heading up towards our porch

and pumpkins when they thought we weren't looking.

They saw the pumpkins locked up,

then turned around and walked away almost annoyed.

So far so good.

Check out what we did:

Halloween card 1

Just that time of year

You know when fall hits and you say,

"What happened to summer?"

Yea that's where I'm at.

We didn't get in near as much as I wanted to this last summer.

Since June Liam has had

Pneumonia,

Infection of his G-tube site 3 times,

and 2 colds/virus's.

All of this and:

1. It wasn't even the scary cold/flu/RSV season (aka quarantine season)

2. And only resulted in one hospital admittance!

The fact that he was sick that many times and was only in the hospital once

is absolutely AMAZING!

The fact that he was sick that many times

and it wasn't even quarantine season is scary.

To think that just a few months ago

an infection of his G-tube site would land him in the hospital,

a year ago a cold would land him in the hospital,

and now he's at home fighting all this on his own.

There is reason to have faith in the future

that things will continue to improve,

that one year soon,

Liam just might not have to be quantantined all winter long.

But sadly he does,

and the season is upon us.

The paperwork for synagis,

to help fight RSV,

was submitted a month ago.

Two weeks ago they were informed that pediatrician referral wasn't enough,

that insurance required the pulmonologist to make a referral on Liam's behalf.

Technically he fits the criteria.

Has chronic lung disease,

asthma,

and frequently requires oxygen.

BUT now the ball is in pulms court

to be bounced back to insurance.

That was two weeks ago.

It's going to be a scary year if they  don't approve them.

Liam just "got over" an infection of his G-tube site.

We just stopped the antibiotics on that this last Tuesday.

His stoma looks great now,

but he's still not tolerating all his feeds.

He's doing great with his day time bolus's

but not so good with his continuous night feed.

Not sure if he caught a virus or not.

He still seems to be gaining weight

and growing taller.

But now here we are,

at the time of year we start quarantine.

Liam has a therapy "field trip" coming up with Bright Start.

It will be our last fun outing for awhile.

And with it goes all my hopes I had had for summer.

We didn't get a chance to go to church like we wanted.

That was a huge one for me.

The hope that we'd get to go regularly when Summer hit,

got me through winter.

Yes I watch the surmons online when my internet is working properly,

but its not the same.

I still feel blessed that he escaped summer,

with so few hospital stays,

and we got to make a little vacation

and take Liam to the beach for the first time.

I know I need to get those pictures posted.

And Liam is doing so much better than he was this time last year

so I have faith that next year we will have open doors

to do things differently.

I would love my kids to be able to go to

Church for the Christmas surmons for once.

And for Lanie to go to Sunday school every week.

I know a real Christmas tree is out of the question right now,

but maybe we can get a real pine wreath to hang,

or atleast show Liam a live tree.

His asthma and allergies just aren't up to a real tree yet.

But I'm getting ahead of myself here.

Lanie is doing great in school.

She loves it.

She was sad when she didn't have homework

the first month.

And now she finishes her homework

AND ASKS FOR MORE!!

I love that she loves school.

She does very well listening in class,

and concentrating.

She even has learned to read some.

Its so amazing.

She says she has lots of friends.

I've watched her play before school,

and she does have lots of friends lol.

I was quiet and shy when I was her age,

but not Lanie.

She's outgoing.

My little social butterfly.

She's very picky on her clothes

and always wants to look nice.

There are some outfits she picks out that I'm not sure I like

but since they aren't inappropriate for school

I let her explore her own fashion sense.

She should be allowed to be creative,

and develop her own personality.

I think soon I will take her shopping,

give her a budget,

and let her choose the clothes she likes.

(as long as they are appropriate for age and school)

I started working.

Its been officially a week now.

Last Friday I had orientation.

I'm doing good at work,

and having alot of fun.

It feels like a mini vacation away from home.

Since working,

I've been happier.

More energetic.

Justin has been able to be home with the kids

while i've been working.

Liam's doing great with it.

He still wants his cuddles and loves from me,

but he isn't as clingy.

Doesn't follow me from room to room.

He still throws a fit sometimes when I leave,

but not every time like he was doing.

When I get my first paycheck next week,

I think Ill surprise both kids with something.

I think new shoes and outfit for Liam

and Ill take Lanie on a girls day to pick out her own.

Then I'm going to use the rest of it to get started on Christmas.

So all in all life is pretty great.

God is amazing.

Say What!?

The last week or two have been a whirlwind of development for Little Lamb.

He started running!

I never thought I'd see the day when I'd have to say to him

"Don't run with that your going to get hurt!"

but sure enough 3 nights ago I did.

He has also been talking up a storm!

Saying things that cause us to turn our heads in shock and say

"Say what?!?!"

He loves to say the word broken.

He tells us EVERYTHING is broken,

including himself.

He pulls at his tubie and says

"broken"

I told him

"your not broken baby your perfect"

He smiles and hugs me.

Tonight he pointed at the ceiling and said

"floor"

I explained that it wasn't the floor.

"No baby thats the ceiling"

Liam responded "ceil".

"Yea baby ceiling".

He pointed again and said

"ceiling"!!!

I am so proud of him.

As of yesterday he says

"Nascar"

He has a long list of words now:

Fiss (fish)

Cuddles

"ook ook ook theres donald duck"

ball

bubbles

Walmart

Run

"Go go go run"

"go go go rae" (race)

Haro (our dog)

Cat

Jack (our cat)

Daddy

Mum

car

eat

wey wey (water or wet)

pay (play)

red

geen (green)

boo (blue)

Boo (as in peak a boo)

puple (purple)

cow

moo

duck

quack quack

woof woof

diaboo (diaper)

bye bye

hey

He adds words to his vocab daily.

They said he would catch up quickly,

I just didn't realize it would be this quickly.

He having growth spurts.

Acting like a healthy 2 year old.

He did have that seizure while sleeping a week ago last saturday.

Pedi isn't worried about that one.

He is worried about the ones he's having during the day.

I had been having such a hard time getting anyone to believe me about these episodes or to show interest.

I don't know why but Pedi believed me.

He knows me well enough now that Im not going to overreact so when I bring something to his attention he needs to listen to the whole story and then come to a conclusion.

Like Ive said a million  times before,

We have the best pedi.

Liams body will tense up and his extremities will shake and his eyes go blank.

An MRI has been ordered to check Liams brain.

Hopefully we wont find it worse off.

The last scan was when we left NICU and there was a bright spot on the cognitive thinking and fine motor skills area of the brain.

We are also waiting for Pulmonology to submit their paperwork as to why Liam needs synages this year.

As of right now he doesn't meet their requirements but we all know Liam needs them.

Its up to pulmonology to say

"this kid frequently requires oxygen and has chronic lung disease".

Praying they do this because we DONT need Liam getting RSV.

We need to keep him out and away from the hospital as much as possible.

More big news.

I am going back to work.

For the first time since April 2011

I will be working.

For the first time since Liam was born July 2011,

I will leave him to go to work.

It's so hard to believe that he's well enough to go back to work.

He's come to far!!

I forgot to mention that he is also eating ALOT by mouth!!

This kid eats almost as much by mouth as a kids his age is supposed to eat!

Amazing! 

2 months ago things didn't look like he'd be doing this great,

but here we are.

And I thank God for it!

New horizons in crafting

I got a new toy today and am super excited! 

I purchased the Original Cricut machine today from a friend for only $75!!

It's brand new.

Box is still sealed.

And white with PINK accents!

Its very pretty.

The machine only cuts images up to 5 1/2" so its the perfect starter machine.

I've been wanting one for years.

Originally so I could create shirts with vinyl.

CDH awareness was my main focus.

But now that I've been looking at all it can do Im super excited about the prospect of

making homemade cards and scrapbook embelishments.

Now all I need to do is sit down and play with it.

I tried tonight but Miss Lanie kept talking in my hear so I couldn't concentrate.

Being a mom,

you gotta know when to walk away.

In my search for help and ideas on how to use the cricut I can along some resouces that I not only want to bookmark, but thought I'd share:

1) http://www.myvinyldirect.com For those who are looking for vinyl they have it at the best prices i've found yet. You can buy vinyl by the yard. 12"x1 yard is $2.98 and shipping is pretty cheap too. They also have iron on vinyl, transfer tape and more.

2) Apparently most machines come with the George and basic shapes cartridge and apparently it is already uploaded on every machine you just have to unlock it. The cartridge is very expensive but this site shows you how  you can easily make one and it works great. Theyve only seen 1 in 100 users not work. http://www.instructables.com/id/Make-your-own-Cricut-George-cartridge-for-free/

3) The few minutes I had to sit down and play with the Cricut made me realize it was going to be harder than I imagined. I got to looking at the manual and read about the craft room. Its a free software download thats compatible with all cricut machines. Even though you don't have to have a computer to use your machine it does make it easier. From what I read you just drag and drop the images until you get what you want then you connect the computer to the cricut and cut. Sounds pretty awesome http://www.cricut.com/home/craftroom

4) Pintrest had lots of great ideas. I just searched "Cricut project ideas"