The Best Things In Life Are Free

I received in the mail a voxbox containing a FULL sizes Reese's peanut butter chocolate spread. This stuff is AMAZING!!

We've done a few different things with it:

First thing we did was grab a spoon to try it out:

Made sandwiches because it's a must to Atleast try one!

Frosted a cake with the spread and oh boy was it delish!!!

But my upmost favorite thing I've done was use it as a dip for peanut brittle. Yes peanut brittle!!

This stuff is a must try!! 

Click the link below to start earning voxboxes today (it's completely FREE)

http://www.influenster.com/r/751751

Loose Thread

Does a series of events lead to remembering old memories?

Or does thinking about those memories lead to a series of events?

What came first, the chicken or the egg?

My son was born with CDH. 

While he was in NICU I learnt to knit. 

After NICU discharge from UCSF, Liam's primary hospital care became our local Children's hospital. 

I started Shooting For Liam as a way to spread CDH awareness and give comfort and prayer to families affected by it. 

I started organizing drives and donating items to Children's hospital to put a smile on the being kids admitted. It's always nice to to receive a random gift and see their faces light up in joy in dark days. 

I got reunited with my Dad's side of the family. 

I found out my grandma loves to knitt too.

Liam had a sleep study then his pulmonologist scheduled an appointment to get the results. 

I faced some ghost of memories of our NICU past and started knitting again. 

A few months ago I traveled to Colorado to visit my Dad's side of the family and my grandma gave me this idea to knit hats and donate them to our local Children's hospital. I just didn't have the time or motivation to put that thought into action. 

We had to reschedule Liam's pulmonology appt that had been schedueled months prior for his sleep study results. 

Last week A 3 year old CDHer was lost to RSV. 

Breath Of Hope implemented a new project this last week called Random Act of kindness to spread CDH awareness and to help honor Isaac whose death has rocked the CDH community. 

I started knitting hats to donate to Our local Children's hospital NICU which will be donated during Liam's upcoming appointment we had rescheduled. 

Alone,

These all seem like random events. But this is a series of events that all played a hand. There's so much more that lead to all this as well. Once I grasped a tread, it was easy to pull and see a lifetimes series of events. It made it easy to see how far one action will really go. How your one action will continue to effect others. People you may not even of thought of. How your actions can effect people long after you are gone. 

I sat here and pulled this tread and gained a new prospective. How say something my father did before I was born effects me today, even though he's been gone for a very long time. 

Makes you think more about giving more and trying to make a difference in this world. 

What will you see when you pull your thread? What will pulling your thread unravel? 

Finding My New Path

When my world came crashing down on me I felt broken.

I was so broken I didn't think I could be fixed.

The world I once knew no longer existed and I didn't know how to handle that.

The family I once had wasn't the same.

I went from being surrounded by those I loved,

to being surrounded by strangers I knew nothing about,

in a city I knew no one.

A city I had never been too.

I found myself in a world I didn't recognize.

with a sick son I could do nothing for.

I felt alone.

Completely and utterly alone.

Broken.

Shattered.

Unrecognizable.

Unfixable.

I spend the last 3 1/2 years riding this wave.

Trying to find a way to make it work,

in a world of the complete opposite of anything I had once thought to be normal.

My new normal consisted of hospitals,

Doctors.

Meds.

Breathing treatments.

Surgeries.

Schedules.

I lost myself.

And now after 3 1/2 years I am trying to find myself once again.

Who I am.

What I like.

What I don't like.

I'm not sure yet who I am,

It's a confusing process.

A long hard process full of ups and downs.

When you've been living in a cave for so long,

it can be scary to see the sky and the sun.

Last year was the closest year we've had to "normal".

I've been finding myself lost in the mix.

I know I need to find my path again.

I can't continue to be this way.

So I've decided to jump in with both feet.

Try something new,

and if it doesn't work then try again.

This time I jumped feet first into PTA.

I jumped to far that I landed myself on the board of executives.

I guess it's fitting.

For the moment anyway.

I need to connect with people.

Remember what it's like to socialize.

It's scary.

I'm way out of my comfort zone.

Maybe that's a good thing considering my current comfort zone consist of sweats,

treatments,

feeds,

and alone at home with only the kids.

Actual interaction with other adults that weren't medical professionals was far and few between.

I know that this new journey will take a lot of work.

Patience.

Will power.

I just want to find a new way in this world.

One with less medical needs.

One with more smiles.

Maybe even find a friend or two.

My Top App Picks

My first encounter with Apps was when I bought a Kindle Fire.

Before then I had no clue what an App was.

The whole concept,

or word really,

confused the heck out of me.

This is just another example of how I've been living under a rock,

since my son was born in 2011 with CDH.

Since learning about Apps I have found several that I absolutely love.

So here are my top App picks,

in no particular order:

*Timehop:

I love the whole concept of looking back on this date through-out the years.

I was doing this before I discovered Timehop but the App has made it so much easier for me.

*Apple Weather App:

This came pre-installed on both my iPod touch and iPhone,

I love that I can go to it at anytime and see what the weather is going to be like.

This makes my mornings easier because I know exactly how to dress the kids for school.

I also love that the background changes to what the weather is outside.

If it's lightening outside this App shows lightening on the screen.

My favorite feature is the nighttime view of the stars.

*Cartwheel by Target:

Seriously who doesn't love to save money?

When shopping at Target I scan everything I'm buying and it'll tell me if there are additional savings.

I can also search all offers before going to the store so I can come up with a game plan.

You can use coupons on top of this App.

I also love that it tells me how much I've saved thus far.

*Blogger:

I think one is just a given.

I don't always have time to get on the computer to write up a blog post.

This App allows me to write post on a whim.

I can add pictures from my phone which is so nice and add hash tags.

Blogger App also allows you to edit previous post.

The only thing I wish it offered was scheduled post.

*PayPal:

I don't use this App a whole lot but it makes it really nice to always have access.

I love that it notifies me when I get a payment from my online boutique,

*iBooks:

This App is a MUST for the avid reader.

I am addicted to reading and have to carry a book with me wherever I go.

You never know when your going to have a few minutes to read.

I can download books from the App Store or from any other site.

*Shopkick:

I love shopping.

I love saving money even more.

With this App you earn points that you redeem into gift cards for many different places.

Target, Starbucks, iTunes and more.

All you do is open the App as you walk into the store and you get points.

You can also go through the App and scan things for additional points.

I've gotten several Target gift cards using this App.

*Pinterest:

Who doesn't love Pinterest?

If you don't know what Pinterest is you really need to check it out.

If you need ideas for something it's there.

I've used Pinterest to plan my kid's birthday parties,

find holiday decoration ideas,

DIY projects,

and much more.

Just be warned that once you open this App (or log in on the computer) you're going to loose track of time.

*Web MD Pain Coach:

This App allows me to keep a detailed record of my pain, 

symptoms,

pain level,

and what helped the pain.

This is great for my checkups at the doctors office because I can just bring up this App and show him how each day went.

*Jo-Ann:

The Jo-Ann fabrics App helps me save money by showing me all coupons that are being offered.

*PicsArt:

I love this App.

I use it to put watermarks on my pictures before posting them online.

Also allows me to make photo grids,

add filters,

frames and "stickers".

*Swagbucks:

I use this App to earn rewards by answering surveys and what not.

*iTorch:

A great App to have for concerts,

football games.

I used this at my nephews football games.

It flashes at different speeds and can be seen from across the field.

*Walmart:

I love this App because I scan all receipts from my purchases at Walmart.

If anything I bought is on sale somewhere else then Walmart will refund the difference to a bluebird card.

It's always nice to get money back.

*influenster:

I love influenster.

I love the App even more

You can rate products and earn VoxBoxes.

Each VoxBox is different and has free items you can review to earn more.

I haven't been that active on it and have gotten 2 boxes with a 3rd one on the way already.

First was a Braun thermoscan ear thermometer.

Second was a full sized jar of Reeses Peanut Butter Chocolate spread.

It's also FREE to join. Click the link below to join

www.influenster.com/r/751751

*instagram:

A social network where you can only post pictures.

This has it's pro's and con's.

Pro is I get to see my friends pets.

Con is if you aren't careful who you follow you could end up seeing things you just don't want to see.

And you can't unsee something once you saw it.

Pro is that you have privacy settings.

Con if you don't have your account private then any perv on the net can get to pictures of your kids.

*tumblr:

I use tumblr as another extension to my blog so it's only fitting that I downloaded the App.

I like it because it's easy to use.

I just wish that I could schedule post.

Check out Mommy Confessional on tumblr.

*Voice Recorder:

A great App to use for PTA meetings to make sure I don't miss out on anything for the notes that I have to officially type up.

*SuperNote:

Another voice recording App.

I like this one because you can categorize and tab your notes.

So there you have it.

My top picks for Apps that I use frequently.

You Don't Tell A Boy No

If you know me, Liam or what we've been through since he's been born then you know about his tubie Journey. 

You know that he's failure to thrive, meaning he doesn't grow like a healthy child. He doesn't eat enough my mouth to gain proper weight so he has a feeding tube. Gtube. 

If you've followed us you know that Not only does Liam not eat enough but he's very picky on what he will eat. This is caused by a severe oral aversion due to all that time being intubated and all the times he's vomited. No one wants to eat if they're just going to bring it back up. It's painful. 

So of you know all this, than you probably know that I don't deny Liam food. Just about anything he wants to eat, he's allowed. At any given moment. 

So it's probably no surprise that Liam's sitting here eating popcorn after dinner. Why? Because he wanted it. 

I do try to help him make healthy choices. I still sit him down for breakfast, lunch, and dinner with a plate of whatever we eat. He knows he must sit there even if he doesn't want to eat. For a few minutes anyway. We try to get him to at least try the foods even if it means eating off our plates. Whatever gets those calories into his mouth and down to his stomach. 

Once he knows he likes the food, he is willing to eat it off his own plate. I make a lot of the same things repeatedly because I know he will eat them. After all, the goal is to eventually get rid of the feeding tube. 

He loves meet in almost any form, including beef jerkey. He loves eggs, French fries, cereal, pop tarts, popcorn, chips, potatoes, bananas. I could keep going but I won't. 

After working and talking to many specialist and GI's, and everything failing, I had to find a way to make eating happen. I had to teach Liam how good foods can be. Nothing anyone did helped. Except what I've done. I'm not trying to brag, just simply stating a fact. 

I've worked very hard to get Liam where he is today with eating so I'm not ashamed to say I hardly ever tell him no when it comes to food. 

Even if it means popcorn for desert. 

Creative Thinking

I've decided to love life,

you must do something you love.

Yes I love being a mom.

I may not love all the things that come with being mom.

or an adult for that matter,

but I love it all the same.

I've gotten into a slump the last few years.

Putting myself aside.

Not taking time to do what I really,

truly,

ultimately,

whole heartily love.

Photography.

We're not talking about snapping pics with my iPhone.

Full fledged,

good camera,

photo editing,

photography.

In all it's glory.

So I decided to challenge myself.

Even if on some days I have to use my phone.

I still want to try something fun.

Something that will make me smile.

Something to refocus the way I see things.

I found this great challenge I want to try for January.

One of the things I LOVE about Pinterest,

is the unlimited idea pool.

So starting today,

I will be working on this so expect some catch up post.

Click Click Click

Those are the sounds of Liam's little tongue.

Sounds that we worked hard to get him to make.

Sounds we weren't sure if he'd ever figure out.

But now,

At 3 years old as he sits besides me,

smiling bigger with every click of his tongue.

I of course smile back because,

duh I'm happy.

Every little noise,

every new word learned,

every jump,

every breathe,

means we won.

We won and CDH lost.

Every day we are tackling those hurdles,

and finding a way over,

through,

or around them.

Every day is an opportunity to overcome.

Every day is an opportunity to smile,

and laugh,

and live.

The CDH community has been faced with so much loss lately.

It hurts.

I may not know these people,

the children,

these babies,

personally,

but it still breaks my heart to see the loss.

To see their pain.

Their journey in finding a way to make this work for them.

It's a continued reminder of what we could have lost.

What we still can loose.

That things change at the drop of a hat,

the change in the wind,

from one breath to the next.

I would love to be secure in the fact that my son is 3,

a survivor,

and will always be a survivor.

But that doesn't make him untouchable.

There are a million things in life that can go wrong.

All I can be confident in is that I have this day,

this moment,

this breath.

That's all any of us can be confident in really.

Don't take for granted the little moments that make life worth living,

because one day you won't have those moments,

and you'll wish you enjoyed them while you could.

(Image is a pic of Liam receiving a flower from his cousin Chass, reminding us to take the time to stop and smell the "roses")

Want more of Liam? Checkout his facebook page

The Weak Link

There are times,

Days,

Moments,

When I wish my son understood the limits of his lungs. 

Why on some days he shouldn't be running,

Shouldn't laugh too much. 

Shouldn't be the hyper little boy that he is. 

And then I feel guilty. 

Guilty for telling him to stop running,

Laughing,

Playing like a healthy boy. 

So instead I stop myself. 

I let him be free,

If only for a little while.

I've had to learn to take things in stride.

But even then it's hard.

I try to cover up his sick lungs,

Implement story time,

Movie time. 

Snack time. 

I get down on the floor with him to play cars,

Blocks,

Trains,

Anything that requires a few minutes of sit down time.  

We do breathing treatments as needed. 

More on some days then others.

Lately it's been more.

He's only 3 year old. 

He shouldn't have limits on how much he can run,

Or play,

Or laugh.

He shouldn't get exhausted by eating,

Or drinking. 

But that's the nature of his lungs. 

The nature of the disease that plagues us every day. 

Chronic Lung Disease. 

Maybe it's been harder lately because he's had more flare ups. 

Two weeks worth of flare ups. 

It's hard on all of us to see him go through this.

We all know when it's time for a treatment. 

Me,

Hubby,

6 year old sister,

Even 3 year old Liam. 

Sometimes when the treatments are close together,

He will fight them. 

I don't blame him. 

So we try to make it fun. 

Read books,

Play with trains or cars,

Watch tv. 

I keep praying he will get better. 

Have less limits. 

I have to have faith that that will be the case. 

Break is almost over

School is almost back in session which means going back to worry about pickups, lunches, homework and IEP's. I'm mainly worried about Liam's IEP. And since I'm no longer "allowed" to just stay in class with him whenever I feel the need too, I won't know how he's handling his days because they don't recognize when he's overstimulated and refuse to stay him away from the situation when he needs it. Instead I'll have to deal with the effects from wens through Mondays because it takes him that long to get over it. It hurts him. It had a long term effect and no matter how many times I tell them they just don't listen. 

His first day back is wensday and I'm already nervous and agitated over this. I don't know exactly what I'm doing to do to rectify the situation. Talking to them hasn't helped. I don't have many other choices left. Maybe talk to his pedi about it and see what he recommends? If I pull him out what will that do? He won't get any therapies he needs then. He's only even getting PT at school when he's also supposed to get speech and OT. 

I'm not looking forward to the kids going back one bit. 

A look back

3 years ago today Liam started pulling himself up into a standing position. We were all so proud of him. It was a moment we had worked so hard for. 

2 years ago today Liam found his reflection in his sisters vanity mirror and spent several hours making faces at himself. 

The smiling Liam. 

The frowning Liam. 

And showing Woody his reflection right before proceeding to chew on him. 

Perfectly Imperfect

So this...

This is life. 

This is what I breathe in every day and night. 

This is what I wake to every morning. 

To outsiders it may not seem perfect. 

Truth is it's not. 

But it's my life. 

My heart. 

My soul. 

My perfectly imperfect world. 

Getting Through Today

Life with Fibromyalgia, Degenerative Disk Disease, Chronic Fatigue Syndrome and whatever else is wrong with me is hard. Being in pain 24-7 with no relief makes doing normal chores hard. Just doing the dishes or vacuuming takes a huge tole on my body. After getting the vit B12 shot a few weeks ago, I have noticed an increase in energy. I am still in pain 
(I'm never pain free), but my energy level is up allowing me to actually get some chores done without feeling like my body was being put through a meat grinder. I have been taking full advantage of this increase in energy and getting as much done as I can every day. I listen to my body and take breaks and I admit I wish I had enough energy to do a deep clean through the entire house, but that's not the case. My kitchen has been staying clean everyday for the last 4 days. All the dishes are done by the end of each day. My counter tops stay cleaned off and disinfected, the floor swept daily. I was able to make a deeper clean in the kitchen as well as my bedroom. Oddly the colder it gets the better I feel. This is the first time in a year and 3 months that I've felt relatively normal. I thank God for the relief, even if it's small, it's still an improvement.