Christmas Drive

This December marks the one year anniversary of when our sweet little lamb became an angel. We are doing a drive in his memory for Valley Children's Hospital.

We want to deliver these packages to the hospital around December 15th and are asking for the following items:

*backpacks or tote bags

*books (for all ages)

*stuffed animals

*blankets (baby-teen)

*small toys

*journals or notebooks

*coloring books or activity books

*crayons, color pencils and pens

*toiletries (NICU parents)

*tethers and baby toys

*baby socks and hats

*on the go snacks (granola bars, protein bars, etc)

These are just some ideas of the kind of things we'd like to include in our packages. We are putting together care packages for newborn to age 19 as well as parents in the NICU. Often times parents are too worried for their babies that they forget to eat themselves or even pack the essentials like a toothbrush or hairbrush. Adult coloring books and puzzle books are a great thing for NICU parents as well because often times there are long stretches of time when they cannot hold their baby so they just sit at their side These items would give them a much needed break as well as relieve some stress. 

We are also having an online Jewelry in Candles party to raise money to purchase items for these care packages. This party will be active until 10/09/2016 and 100% of the commission is going to buying more items for children's hospital. Click here to shop our Jewelry in Candles party

If you'd like to donate items, please contact us on our Facebook page or email us at shootingforliam@yahoo.com

A care package we made for a family who was in the NICU at Children's hospital August 2016.

Our donation to Children's in memory of Liam in April 2016.

Just some of the items we donated in April 2016.

October 2012, our tethers for teethies drive. 

CDH Awareness Video (Godspeed, Sweet Dreams)

Life After Loss

 

 

I'm not sure how others handle the loss of a child.

And I know not every piece of advice is good advice.

But one piece of advice stands out above the rest:

 

"The pain never goes away,

it only gets easier to hide"

 

Its been 17 week and 6 days since my Liam grew wings.

Some days are harder than others,

but every day is hard.

 

I shouldn't of had to say goodbye to my son,

who was only 4 years,

5 months,

and 1 day old.

None of us should ever have to say goodbye to our children.

None of us should have to see our children struggle,

or fight for their right to just live.

 

But we do.

Because of Congenital Diaphragmatic Hernia.

 

Sure we know the statistics:

1 in every 2500 liv births are effected by CDH.

Only 50% of babies survive.

Most that do suffer life long medical problems.

 

But statistics are just numbers,

until we have to live them.

 

When we were in NICU with Liam in 2011,

there were 4 CDH babies fighting.

Only 2 of those babies made it out of NICU.

 

Liam fought every day of his short little life.

And even though we knew there was always a chance we could loose him,

we just thought as each year passed we were closer to being out of the woods.

We didn't expect this.

 

CDH doesn't just cause problems with the lungs,

heart,

or intestines.

It messes with the immune system and weakens it.

And when you have a child who is failure to thrive and unable to gain weight,

their immune system is even more weaker.

 

A "simple" cold would land Liam in the hospital and on oxygen.

He fought frequent pneumonia's,

colds,

flu's,

RSV,

until he caught a virus he could no longer fight.

 

He battled this virus for two weeks.

It would seem he got better after 3 days,

then sick gain.

Basically he couldn't fight this off any longer,

and his body gave out.

This virus caused a pulmonary embolism,

which took his life.

 

There hasn't been a day without tears.

Some days I can go out into public and hide my sadness,

my anger.

Other days all I can do is cry.

 

Liam's life came down to numbers and boxes.

How long he lived.

How much it cost to cremate him.

The urn,

a wooden box his ashes forever rest in.

The number of boxes his stuff got packed in.

Boxes and numbers it seemed was all anyone cared about.

Except me.

 

Because no one on this planet knew Liam like I did.

 

And I think all mothers feel like that.

 

So why do I continue to spread awareness when I could just walk away from it all?

Because I can't walk away.

I don't want some other family to be blindsided like we were.

Because someone could learn about CDH from something I do or say,

and that leads them to spread awareness,

and possibly one day someone will invest in research and make a difference.

No it won't effect me since my son is gone.

But one day it'll make a difference for our great great great grandchildren if we're lucky.

 

I don't know what makes anyone feel "better" about their loss.

I don't know how others cope with it.

I just keep putting one foot in front of the other,

moving forward in hopes that one day things will just click,

and one day I'll "feel better".

Out Of Suffering

What Does CDH Mean To You?

We want to know what you think of when you hear CDH.

How has this journey changed you?

For me, CDH means strength.

You have to be strong to endure this journey.

And if you didn't start out strong,

it made you strong.

"You never know just how strong you are until you have to be"

Share with us your stories.

Your memories.

The ups.

The downs.

What CDH means to you.

Let's spread #cdhawareness

CDH awareness week is March 25-31st

Shooting For Liam

Liam's personal FB page

Breath Of Hope

CDH Awareness Tshirts

With CDH awareness week only 49 days away we started our tshirt fundraiser.

Please help us spread awareness by buying one of these great shirts.

The money helps us raise awareness to our local hospitals and community.

This fundraiser will last only 2 weeks so get your shirts while you can!!

Please spread the word and the link.

The money raised will be going to print awareness pamphlets,

items to comfort the kids admitted into the hospital,

and spreading awareness to our community.

Here's what we wrote on the fundraiser page:

We are raising money to spread awareness to our local hospitals and community about Congenital Diaphragmatic Hernia, a deadly birth defect. My son was born 7/14/11 with CDH and survived. CDH affects 1 in every 2500 births. There is no known cause. 50% of babies born with CDH do NOT survive. Most people have never heard of CDH unless they or someone they know has been affected. We want to change this by spreading awareness as well as helping CDH Families. 

Check out the fundraiser at http://www.booster.com/s4lcdhawareness

Gastropharisis

What is Gastropharisis?

Liam's been diagnosed for since he was a few months old with Gastropharisis. Like with all things I normally re-research everything Liam's been diagnosed with to  see if any new info has popped up. Lately his Gastropharisis has been on my. It most likely stems from my frustration that Liam will only take a few bites of food at a time before being done. 

I got my info from the Mayo Clinic website during this search.

What is Gastropharisis? How does it affect you? 

It's not always clear why someone has Gastropharisis but in many it's believes to be caused when the vagus nerve is damaged. The vagus nerve controls the stomach muscles and helps manage the digestive tract. It' sends signals to your stomach telling it to contract to push food through. When the vagus nerve is damaged it can't send signals to the stomach. Damage can be caused by disease such as diabetes or abdominal surgery. 

What are the symptoms of Gastropharisis?

Vomiting 

Nausea 

Feeling full after just a few bites 

Abdominal bloating

Heartburn or GERD

Changes in blood sugar

Lack of appetite 

Weight loss and malnutrition

There is no cure for Gastropharisis. Changes to diet it meds can sometimes help. Gastropharisis can cause complications such as:

Bacterial growth in the stomach due to food sitting there. 

Food left in the stomach can harden causing a hard mass called a bezoar. These can be life threatening. 

Blood sugar fluctuations. Poor blood sugar makes Gastropharisis worse. 

In Liam's came his vagus nerve was damaged. The doctors aren't sure if it was due to his birth defect CDH or the repair surgery. They are however sure the nerve was damaged. Liam recently in the last 6 months was weined of his mobility med, erythromycin and takes his acid reflux (GERD) meds as needed. 

Liam will take only a few small bites of food at a time. Some days more than others. He has his ups and downs. He can be fine for a few days, weeks or months then get hit with severe vomiting symptoms and have to be taken to ER for fluids and IV zofran. He has random sparatic stomach due to his Gastropharisis. I'm still "new" to this so I'm unsure what the future holds as far as eating is concerned. I've had little contact with those who've had Gastropharisis for years and little idea on how if this only gets worse over time or if in some cases it does indeed get better. 

Considering there is no cure I am sure that Liam will not be miraculously cured of Gastropharisis anytime soon. The good news is that after changing his feeding tube from a Mickey to an AMT mini one ballon less his episodes of vomiting have been cut by 90%. 

I am reveling in the fact that this time last year we made the switch in tubes and it's made the world of a difference. He went 8 months with NO hospital stay! I tiredly believe it's because we switched tubes because it was an instant change in him. This time last year Liam started eating and showing interest in foods. It was a slow and steady start (although at the time it felt he was diving in head first and eating as if it was an everyday thing for him). That was my small miracle. 

People live with Gastropharisis everyday, some their entire lives with minimal flare ups and episodes. It's manageable. I may now know if or when Liam will decide to eat and ditch the feeding tube but I do know he can live a fairly normal life. And for a mom of a special needs child, fairly normal is perfect! ❤️❤️❤️

"I may have Gastropharisis but Gastropharisis does NOT have me"