Wear Your Jeans Day

Today is #rarediseaseday Wear your jeans in support of everyone with a rare disease. Liam has two: CDH and Biotinidase Deficiency. #cdhawareness 

Surgery Tomorrow

Tomorrow is the day. Liam must be at Children's tomorrow no later than 7am for his scope and possible relocation of his gtube. We have to leave at 5:30a to make sure we get there on time. I'm nervous that Liam is going under and nervous that he's most likely going to have to have another hole cut into him. We need to do whatever we have to to stop the pain he's having now though. We also need to be able to use the feeding pump again at night. It's that moment of complete and utter "my hands are tied and there's nothing I can do" kind of situation. To top it off his allergies are bonkers again causing his asthma to act up. Please pray for Liam and pray that the doctors make the right decisions. Thank you ❤️❤️❤️ #cdh #cdhsucks #surgery #gtube #tubie #spoonie #feedingtubeawareness 

Taken last night when Liam woke up crying in pain saying "my belly button hurts". Breaks my heart 

Be Happy

Do you remember when you were youger? Before marriage, kids, girls scouts and PTA? Do you remember what you wanted in life back then? What were your aspirations? What were your dreams?

Now after years of diaper changes, fevers, teething, colic, being covered in just about everything that you put in or comes out of your child, car pools, meetings, organized events and so on, do you feel you reached those aspirations and dreams? Or have your life goals changed?

Are you where you thought you'd be 10 years later?

I thought by now I'd have a really good job and would be successful at that. I thought I'd be married and have 2 healthy kids and own a house. 

Sure I've had several really good jobs (kitchen designer, tax professional) but for some reason or another that chapter in my life closed. One because I was young and didn't have the back bone to fight for my dream job. The other because my son was born with CDH and he needed me. 

I'm married and I have my 2 kids. One isn't the ideal healthy but much healthier none the less. And I don't own a house. 

Some might look at my life and call it a failure. Would you call your life a failure? If you would, I'd like you to take another look and rethink that. 

You may not have the job you always wanted. Your life may not have went the way you dreamt. But it's not because your failed. You can't fail life as long as your living it. 

I like to think of our lives as chapters in a book. Every chapter must end before another can end. 

Are you happy? Do you have something to smile about? A friend to lean on? If not, then do something about it. 

I want you to ask yourself, what makes you happy? Sometimes the little things make the difference. Does a nice cup of coffee set your day on the right path? Does getting a new book put a smile on your face? What about that selfie you just took and posted on Instagram? 

Find something that makes you feel happy. Surround yourself with happiness. Even something simple. 

You have a bracelet that makes your grin every time you see it? Wear it! 

Is there a song that just makes you want to sing along and dance every time you hear it? Make it your ringtone. 

Inspiration for happiness can be found anywhere and everywhere. Just open your eyes and latch onto something. Because what's the point of life if your not happy living it? So BE HAPPY!!

Believe In Life

"Believe in Life! Always human beings will progress greater, broader, and fuller life" 

-W.E.B. Du Bois

I haven't had much faith in life lately. I also haven't wanted to talk about it. But I think it's time I let it out because I'm prone to bottle things up until one day they explode like a shaken soda. 

You see, I am a ticking time bomb of sorts. I always have been. I just hold on to all my anger and pain until there's no room left and I can't control the explosion. 

I don't want that. I don't need that. But if I don't act soon it might be the likely ending.

I'm miserable and having a hard time seeing good and happiness.

I'm in pain constantly and that pain is getting worse with each passing day. I'm not able to find any relief. 

Before I could find relief with a heating pad or IBproffen. If the pain was really bad, I'd dip into my tramadol. 

Sadly none of that is helping. Not even the tramadol. 

I'm having a hard time walking. My muscles are twitching and spasming so bad that my body is constantly moving. 

I won't go into anymore detail.

Emotionally I am a wreck.

I'm angry at the world.

Angry I can't find my happiness.

I don't have the energy to actually speak to anyone.

My husband isn't helping the situation any, but that isn't new.

He wants me to talk to him and I just don't have the energy to let it out. 

I don't have the energy to make everyone happy.

I haven't been cooking for anyone. Justin's been doing that. But it does me no good because I don't have the energy to eat.

I finally ate at 3ish today. Just a few bites and it made me sick to my stomach.

The pain won't let me keep much food down.

I'm mad at the world because I'm mad that this is my life.

Pain filled misery.

Why me?

What did I do to deserve this?

I diligently take care of my son with his medical problems.

I hardly ever complain despite the fact that I probably deserve too.

But I don't because it's a waste of energy that I don't have.

I saw the above quote and thought maybe this is what I need.

So I take as deep of breaths as my lungs will allow (which is shallow breathes that are painful if I inhale too deeply).

With each breath I remind myself that life is good.

The sun shines.

The rain falls.

My kids smile and laugh.

God loves me.

It's like a mantra I keep saying over and over in my head. 

Maybe I'll start to believe that I should believe in Life again. 

One day. 

Maybe. 

Dear Feeding Pump

I hated you when they first handed you to me. It wasn't that you were complicated to figure out, because you were far from that. It was simply the fact that my son required you. 

Without you and his feeding tube he would of lived a life inside the hospital hooked to IV's until he withered away. 

I grew to, not love you but respect you. You were the trusty little machine that kept it all going, giving me less sleepless nights.

The you decided to cause problems. Alarming in the middle of the night when the world was sound asleep. You sounded off like a tornado warning, scaring the crap out of me. Giving me a heart attack, just to tell me there was a flow error. 

And after fixing said flow error, you would alarm again. I would fix you again and again and again and again. Yet nothing worked.

We started calling and having you replaced. Still the newly delivered pump would start the same process of alarming just a few days after delivery.

Your alarms have put much added stress onto my life. They've caused my PTSD and anxiety to soar high. I have nightmares of the pump alarming. I sit there at night listening to the gears wind, pulling formula through and pushing it into you. I sit on the edge of the bed, my heart racing, biting my nails knowing that no matter what I do the alarm will come. It's just a matter of time. 

Nothing can prepare me for your error alarms or the flood of emotions and anxiety that comes with each and every siren, because that's what it sounds like. A siren going off in the middle of the night warning us we are under attack and that the bombs are surely about to drop. That's how my body reacts anyhow.

Every night I sit on the edge of the bed, shaking and waiting. When the alarm goes off all I can do is silence it and go through the list of things to check. And try so hard not to cry in frustration. Of course there is nothing wrong with the line. There is no "downstream occlusion" as you warn there is. Nothing. Everything is fine. Yet you still alarm. 

Finally, after hours of fighting the pump, I turn it off and resort to bolus feeds through out the night. No longer am I getting any sleep because I need to be up every 2 hours to bolus my son and that's still not as much as he gets through the pump.

And I cry. Because I see that my son isn't gaining weight. In fact he's loosing it because he gets more through the pump than I can possibly bolus.

So dear trusty, dependable pump.....

Your a jerk. You've failed my son. You've failed me. You are no longer a useful member of our family. No longer a trusted piece of medical equipment. I no longer have any respect for you and just want you out of my house!

Note: The pump brand in question is the Kangaroo Joey and the Kangaroo E pump. The events posted above are true. I've spent years fighting with both the pump and the medical supply companies to replace the pumps. We've gone through countless and it's been frustrating. After 3 years and 5 months with a Kangaroo, I've requested my sons insurance to change out our pump to the infinity. I know many people who have made the switch and have had no problems at all with their infinity. I was also told by insurance and the supply co that the Kangaroo is no longer being made. My suggestion to you is to not wait it out and fight with the Kangaroo as long as I have. Because of this my anxiety runs high. What I wrote above saying how I felt is all true. 

This Love

This...

Right here...

There's so many emotions at play here but love is the forerunner. 

This is true, unadulterated, unconditional love. 

Love that last for all time. 

A love that will only grow deeper as time goes on. 

A love that seeds itself into your soul and spreads like an unstoppable force. 

This is what Valentines day is truely about. 

Not flowers, cards or candy. 

Not cheap or expensive peices of jewelry you'll wear once and then it's left to tarnish in the jewelry box. 

No. 

This love and these cuddles are what matters. 

Exhaustedly Optimistic

I didn't get much sleep last night between the migraine, justin cranking up the heat and him accidentally smacking me and kneeing me in his sleep. But I was able to get 2 hours sleep after taking a back up tramadol and I feel so much better. I'm even in a good mood. That was the best 2 hours sleep I've had in years. Today I head down to Bakersfield to see a neurologist. He's apparently a neuro surgeon and I'm praying he will have some answers and maybe even solutions to my pain and headaches. I would love to be pain free. I haven't been pain free for years or headache-less in about 5 years and have forgotten what it feels like to feel that way. I don't expect miracles. My goals are realistic. I just want the pain and fatigue to ebb enough so that I can have the energy to play tea party and dolls with Lanie and chase Liam around the house laughing. I want it to ebb enough to where I can sleep again and not have to fight my body just to take care of Liam's medical needs. I shouldn't have to barter and bargain with my body to do these things. It would be nice to not have the simplest things drain me. Today I'm feeling optimistic. There's more to life than pain and it's time I got to experience that. 

When Is It Enough

          I'm walking down a rocky road here and need to find my way to solid ground. I really thought God wanted me to go and do something (not going to say what because I don't want to bring that whole slew of trouble into the mix). Now, just 2 months later, I don't feel like he's still wanting me on this path. I stood up and took responsibility and to just walk away could mean the very end of this "program" all together. A few of us are trying really hard to make a difference and then there are a few people that have no clout, no shame, and just don't care trying to make sure that not only do we not make a difference but that the blame falls on our shoulders.

          My heart hurts thinking about how much good we could really do if only these few people would "play nice". My heart hurts because I've put in a lot of time into this and sacrificed my families needs to do this and all that's happened was the blame game and being threatened. I'm trying to do the right thing. I'm trying to follow God's path for me and be a Godly woman in the face of this tornado. I just don't know if I can continue to stand strong and not walk away.

          The stress this has put on me has been horrible. It's affected my anxiety. My heart has more episodes. Is all this and more worth it? When do I draw the line and say I've had enough? I just don't know. 

CDH Awareness Shirts

CDH awareness is an important part of our daily lives since Liam was born with it. 

Before he was born with CDH we had never even heard of it and we learned that that's the case in most scenerios. We are really hoping to make a difference and change that. 

When Liam was born he was put on ECMO as a last ditch effort to save him but the doctors didn't think he would survive. Babies born with CDH have a 50% survival rate. Those who have to be put on ECMO have less of a chance. Those who have to be transfered from one hospital to another have their odds cut drastically. In Liam's case the hospital he was born at didn't know he had CDH at first and tried to bag him in an effort to open up his lungs. That's one of the biggests No's you can do and the reason he was so sickly. Because of all this Liam wasn't expected to survive. 

We want to spread awareness and help other families effected by CDH. We donate items to our local Children's hospital to help kids admitted find some comfort. Hats, blankets, toys, books and CDH awareness info. 

I also create awareness graphics and tshirts. 

Our current fundraiser to help us continue to spread awareness is a black shirt with a logo I created. 

There is only 11 days left to get this shirt. Know that every penny we get from this fundraiser will go to spreading CDH awareness and donating to our local children's hospital. 

http://www.booster.com/s4lcdhawareness

A Special Needs Mom's Point Of View On Vaccines

Vaccinations are something I feel passionate about. My son has Chronic lung Disease because of CDH. He gets sick easier, stays sick longer and words harder to fight it off. So when it came to vaccines it was an obvious choice... VACCINATE!!!

People talk a lot of crap about vaccines and some people are even trying to say they cause things like autism. Really? You people have said just about everything under the sun causes autism. I get it though. Your pissed your child has autism and you want/need someone to blame. Stop turning this into a witch hunt. 

When you don't vaccinate, it's not only your child your putting at risk, but the whole community. Take this example into consideration:

You are a parent of a school age child and a newborn baby. You love watching your school age child (A) come home and play with baby (B). You enjoy the smiles and the laughter and honestly the small reprieve from holding B and use this time to either run to the bathroom or switch a load of laundry. Imagine that they do this every day and every day it fills your heart with joy. Only day A comes home from school acting a little tired than normal but seemingly fine. A sticks with the normal routine playing with their newborn sibling. The next day A wakes up feverish and vomiting. Next thing you know baby B is feverish and vomiting. Now chances are A is strong enough to fight the flu off but since you didn't vaccinate against it, the symptoms are far worse and they didn't have a chance at NOT getting the flu. So A gave B the flu. B is still too young to vaccinate against the flu but if you would have vaccinated A and yourself you could have avoided this. Within a day or so B is continuing to do worse and can't even keep down fluids. You have no choice but to rush B to the hospital where they are admitted and stuck on IV fluids, and IV zofran (a antinausia med). Now because of the flu causing vomiting, baby B aspirated and develops pneumonia on top of the flu. B is put on IV antibiotics and oxygen and breathing treatments. B isn't even allowed to eat because they fear it'll only get worse. Baby B continues to decline and suffer and ends up with a breathing tube and the docs use a paralytic so they can rest. If baby B does get better than their lungs have been seriously compromised and could have lung issues for the rest of their life. Now tell me, if you think the vaccination would have been a good idea? 

Situations like this happen all the time and not just with newborns. Kids like my son with lung issues are badly effected by viruses like the flu. 

Now that was just an example of the flu. The measles are far more deadly and so is things like polio and whooping cough. You say vaccines aren't worth the risk but you have no idea what can happen. And even if your child survives, think of those who you've effected with your decision. I'm assuming you won't think not care because you've already made the decision to put your entire community at risk. 

My opinion is to vaccinate. There are no if, ands or buts. The flu and pniemonia are just illnesses that sent my child to the hospital on countless occasions. 

If you unvaccinated and sick child got my vaccinated child sick and they were to, God forbid, not survive and walked up to you and told you that because of you my child is dead. How would you feel? Would you care? Are you that heartless?

Think about the bigger picture here. Vaccines don't cause autism. That's just people grasping for blame. What about all those unvaccinated children with autism? What caused that? 

Do you know what happened before the polio vaccine was invented? 

 This is the iron lung machine. These are kids affected by polio and this was the only treatment for them. These kids had to live this way because there was no vaccine. 

Before the chicken pok vaccine, children were dying. Yea sure you can still get the chicken poks with the vaccine but the vaccine keeps it from being deadly. 

Think your decision through. 

2 years ago today

#fbf 2 years ago today, swinging with my baby boy. I just love his smile. If you look close at me you can see the exhausted mommy with circles under her eyes, exhaustion in her eyes and disheveled hair. Yes, yes this was and still is our life. That smile of his though makes it all worth it. #cdhawareness 

Go Away Tubie Go Away

(Pictured in Liam with his first post NICU feeding tube featuring tagaderm cut into the shape of a heart by me because this was the first NGtube I ever put in)

Tube feeding.

Not the hardest thing I've ever had to go through with Liam.

But I still cried when they said Liam was failure to thrive (FTT) and needed a tube.

3 years and 3 months later and it isn't getting any easier.

Liam ditched the NG just about a month after receiving it and "upgraded" to a Gtube.

He then went from a Gtube to a GJtube and back to the Gtube.

Last week Liam started crying over Gtube pain.

I rushed him to the GI because I thought it was infected.

I was told it didn't look too bad so we just did antibiotic creams.

That was last Wed.

Thursday I changed his tube out for a new one.

That badly irritated it and caused bleeding and worse pain.

Liam hasn't made it through a whole 3 hours of school because of the pain.

He doesn't go an hour and a half without crying in pain.

Today I called GI back and explained the situation.

She (Brittney) said that we need to try oral antibiotics.

She called our main GI and he said that if the antibiotics don't help within the next 3-4 days that the next course and to try a different type of tube.

I explained that that wasn't possible because the AMT mini one balloon-less button has been the ONLY button that worked for him.

She asked why the mickey didn't work and I explained that the balloon hits his pilorex muscle causing him to vomit.

This concerned her immensely.

She said that means the position of the tube is too low and that it needs to be moved higher.

So the conclusion is that if the antibiotics don't work that Liam will need to go into surgery to have his stoma closed and a new hole made for the tube.

I don't want this.

I don't want him to have to have surgery.

Yes I think he needs it.

I think this is the right move for him and it will help.

I just don't want to have my sweet boy have to go through surgery again.

As a mom I want to protect my little boy.

I want to keep him from pain and to keep him happy.

I'm scared for him.

Irrationally So

          Sometimes life is downright scary. Frightening. Horrible. I've learned a lot yet not near enough in my lifetime.

I'm scared.

          I have no clue what's going on with me medically and I'm getting worse. This last two weeks vertigo and dizzy spells set in. Last night I started getting shaky at signs on stress. The more stressed out I got during a very important meeting, the more my body shook. Uncontrollable shaking. By the time the meeting was over it was bad and easily spotted by anyone who glanced at me. My friend was sitting across from me and noticed. By the end of the night it looked like I had been sitting in the snow a 20 below for hours on end. 

          I wasn't cold though. I sat there fighting my muscles trying to keep them still. That resulted in being extremely sore today. I thought it was a one time occurrence but this morning I started getting stressed and the shaking started again. It took 2 hours to stop this mornings light episode of shaking. 

          Then a little while ago I got a call from my doctors office and became stressed again (irrationally so) and the shaking began again. She informed me that the neurologist I was supposed to be seeing next week was a neuro-surgeon not a neurologist. This set me off. It was irrational I know but I couldn't help it. My stress level escalated, the shaking began and I started crying. I couldn't help it. I have no idea what's wrong with me and I can't control it.

          My brain processed this info as,

What's wrong with me?

When did thing's go from ok to neuro-surgeon?

Does this mean there's something serious and I need surgery?

I just can't deal with this, why won't it all go away.

          I know that I have to go to these specialist. I have to get better. I can't give up. There's no other options in my book. 

          To think that my doctor diagnosed everything wrong with me as Fibromyalgia is preposterous. 

CDH Awareness Tshirt Fundraiser

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