NASCAR Sunday

What a Sunday, or NASCAR Sunday as we call it. Liam absolutely loves NASCAR and watches every race from start to finish cheering on Jimmie Johnson and the 48 car. We had a great day. Here's some pics I took through out the day. 

Liam watching NASCAR. 

This picture melts my heart. 

Liam was exhausted and fell asleep halfway through the race. 

Lanie playing with Blu and Luiz stuffed Rio toys and watching her Tia make food. 

Tia hard at work making dinner. 

He's infatuated with his button and showing it off. 

I love this pic so much I used it for feeding tube awareness:

Lanie and I making funny faces at each other. We do this often. 

I find this picture so endearing. Lanie helping her uncle BBQ while Zues stands guard. 

We had a blast. Jimmie Johnson won today's race. What could be better?! 

Double rope bun

Tonight I decided to play around with Lanie's hair. I had found a tutorial for the double rope bun and though it was adorable. Mine turned out a little different but still super cute. 

It's a bit of an older look for her and in not sure how I feel about that but it's super cute. 

Lanie loved it. I haven't done much with her hair lately besides leaving it down, in a pony tail or messy bun so it was fun to do something different. 

Below if the tutorial I used to make this hair style. 

1) separate into even level pig tails as show.  

2) split each pig tail in two then twist them together and use a hair tie or rubber band to bind it together. 

3) give the twist some volume by fluffy the sections. 

4) wrap the right braid in a circle around your head. 

5) wrap the second twist following the right twist. 

6) fasten the end with a bobby pin. 

7) go through with bobby pins to fasten and adjust as needed. Use hair spray if your planning on leaving it in. 

I used 7 bobby pins in Lanie's hair just to make sure it would  stay put to her running around and playing but didn't use the hairspray. Sure enough after 2 hours of play it stayed put and perfect. I absolutely love this braid and can't wait for my hair to get long enough to use this style on myself. 

Unexpected Eventful Day

Today has been unexpectedly event here for us. Lost of blessed little moments that I am so happy I got pictures of because in years to come they will be treasured by the kids. 

Lanie and I started today off with a breakfast "date". I woke Lanie up a few minutes early today so she'd have plenty of time to get dressed then I took her to have breakfast at school. She was thrilled.

She opened up her milk all by herself, which she was so proud of doing. 

Then she opened up the little package containing a napkin, spork and straw, all by herself. 

Lastly she opened up her cinnamon waffle, all by herself. I asked if she needed help but each time told me "no mom, it's ok I got it". 

As she ate she people watched. Something I've always done as well. She talked about all the solar systems that the older kids were carrying around. She thought each and every one was made perfectly and commented that she bet it took them a long time and hard work to make. She also said she couldn't wait to make one of her own in 1st grade. I explained that it would probably be a few years before she had to make one for school seeing as how the children carrying solar systems had to be in 3rd or 4th grade. At this she just shrugged her shoulders and kept admiring them as each one passed. 

After eating her fill she placed her untouched fruit and apple juice in her backpack to save for snack at recess then we made our way to the kindergarten playground. On the way we met up with one of her friends, Lane and his mom. The two played while us moms talked and watched. 

After getting home from dropping Lanie off at school I decided to make breakfast since Liam, Justin and I hadn't eaten and were hungry. After breakfast Liam needed a shower. He was covered in jelly. After a shower it was time for bright start. 

Miss Julia had a couple new activities for Liam. First Liam practiced lacing beads onto a shoe string. He's getting better at that. We did notice that his little arms were shaking as he did this activity. Maybe he's just tired today, we aren't sure, but coupled with the decrease in talking this morning points towards tiredness. 

For his second activity She broke out a peice of paper and scissors. Yes scissors. She apologized in advanced for showing him how to work scissors but it was a skill she had to access. 

He was able to cut using two hands but not one handed. In the above picture Julia is showing him how to hold the scissors and how they work. 

This smile says it all. Not only did he think cutting paper was the coolest thing but he was so very proud of himself. Despite the fact I'm worried he might now seek out scissors and start cutting things, I am very proud f him as well. 

Lastly she laid one card at a time down and asked Liam what each child was doing. Liam would tell her 

"Running"

Or "sleeping" depending on the picture. 

On one card of what looked like a child writing Liam said "cutting". Julia goes "huh? He's not..." Then she noticed a pair of scissors laying on the table by the child. So of course he was praised for noticing just a little detail. 

During bright start fed ex delivered a package for Liam but it was time to pick up Lanie right after Julia left. So after  Lanie got home from school Liam was able to open up his package. 

The package was from the Kira Foundation. thekirafoundation.org (they have a Facebook page as well). The Kita Foundation provides "Bucket of Love" to children fighting cancer. Liam does not have cancer but there was a misunderstanding and Liam's name was put on the list to receive a bucket of love from these amazing people. After contacting them through email they said that they did know Liam did not have cancer but that the bucket was made just for him and the very amazing woman I talked to thanked me for spreading CDH awareness and that before Liam she hadn't known of it. 

We want to send a very big thank you to the Kira Foundations. Liam absolutely loves his bucket of love. 

Lanie was teaching Liam how to so puzzles on his new Mickey Mouse puzzle. 

I love this because they worked together to finish this. 

Later on the kids uncle showed up unexpectantly. The kids love their uncle. 

Uncle and Liam play fought. 

And uncle let Liam win. 

The kids had a blast and we had a very blessedly blissful day. 

(Besides my back pain)

Again we want to thank the Kira foundation and we hope you go like their Facebook page and visit their website. 

Oh and this momma had a job interview on Monday 😊❤️😊❤️😊❤️😊❤️

Delightful Little Boy

Babyhood is full of innocence. Liam's life as a baby was harsh to say the least and I believe that Liam thinks this is just how life is. He knows no other way of life. For a long while is was full of pain for him and he was miserable at times but Liam is strong. Because he knows no other way I believe that's why he was able to smile through it. At times he was so weak, pale and fragile and you could see the pain in his eyes but he would look up at me and break out into a grin. For that short moment while he'd smile he's forget about the pain and I'd have hope. 

Ive been asked many times how I did it. How I stayed by his side through it all without falling apart. The truth is as a parent you kick into auto pilot and do whatever is needed. Why I didn't fall apart is a miracle. But as every day passed id see a change in him and with every passing day is have more hope for the future. 

Liam's transition between baby to toddler was seemingly overnight. For months Liam could only take a step or two on his own and couldn't stand unassisted for long. Then one day everything changed. Liam just stood up and took off walking. Out of nowhere. I remember we were in the doctors office when it happened. I sat there holding him in the room and cried. I was so over joyed. 

From that moment on, everything changed. Liam was no longer a baby. His behavior changed into a toddler. There really was no smooth transition it was just one minute he's my baby and the next he's a full blown toddler going through terrible twos. Liam had almost two years as a baby, just one month shy to be honest. He started walking about a month before he turned 2 years old. It was momentous. 

The little boy Liam is today is mind blowing. He's is strong willed, opinionated, stubborn, hilarious and oh so adorably perfectly boy! 

I absolutely love the little boy he's become. Yes there are moments when I want to pull my hair out but I am so grateful for them. 

He has this high pitch scream he does when he doesn't get his way. It causes me many headaches but I love the sound. When he was in NICU and could not make a sound I couldn't wait for the day I could hear his little voice cry, scream, talk. Now I am getting my fill and more.

Liam hugs are magical. I could be in the worst mood ever and Liam will just walk up to me, climb up and wrap his little arms around my neck. He will then say in his sweet little voice "mommy!" all excitedly, and kiss me before walking away. He melts my heart, pulls all the strings and fills it with joy. 

My favorite quote if all time is and has always been "imagination is greater than knowledge" by Albert Einstein. Every day it watch Liam as he plays and I can see his imagination growing. The way he plays with his cars, stuffed toys, and other things. As I watch him, I find myself sucked into his imaginary world and just for a few minutes I can imagine what he's seeing. 

Every day is a new experience. I watch as he gets stronger with each passing day. Every day his love for food grows and he eats more. It's extremely exciting. Liam's communication skills are growing as well. I find myself asking him questions or saying things that get the response "okay mommie" or "yaaaay yay yay". The way he says "bye bye" elicits the response to take him for a ride in the car. 

Liam knows he cute and knows how to use it. A smile or a bat of his eyes and he has everyone willing to give him anything he wants. No one is safe from him charms. 

My absolute favorite age for Liam so far is the age he is at right now. 2 years and 10 months. Everything is exciting and new at this age. It's all too easy to get wrapped up in their amazing, happy little world. 

Throw Back Thursday 5/22

Throwback Thursday where we go back and visit memories. 

1 year ago yesterday:

Liam's first time trying a churro. He lived the cinnamon but not the bread. Presently he loves bread. 

2 years ago last Tuesday:

Liam was hospitalized at Children's and was on oxygen 100% of the time. 

Thank you TimeHop for taking us down memory lane! 

Breakfast With My Big Girl

There aren't many things sweeter than a child's smile. Lanie smile this morning when I took her to school early to eat breakfast in the cafeteria was worth getting up despite lack of sleep last night thanks to Liam's night terror and stomach pain. This smile I would just about anything for:

Lanie really wanted to go to school early and eat breakfast at the cafeteria more than anything. She begged and pleaded. Yesterday I told her yes. I hadn't expected my night to be so terrible but if I woke up to this smile everyday I'd do it in a heart beat. This smile woke me up better than a whole pot of coffee (and it's healthier than coffee 😉) 

I watched as Lanie stood in line (above pic) for the cafeteria, sanitize her hands before walking in, check in with the lunch lady, choose her food and carry it to the table outside where we sat. 

Lanie opened her cerial without any help. I wanted to cry. I'm just not ready for her to grow up. Luckily I think she cought on because bless her little heart, she asked me to open her milk for her. I was also allowed to open up her spork. 

Lanie poured milk over her cereal all by herself. I was in utter shock at how much she's really grown up. I didn't jump in to do it all for her like my instincts wanted me too. I played nice and let her do it. 

Why?

Because this smile showing how very proud she was of herself. I feel so blessed to have been able to have this moment with her. Next week they will be getting to have lunch in the cafeteria to practice the proper procedures and learn what's expected of them next year when they enter first grade but I was so happy that she choose to have me teach her the basics. 

My heart is overflowing with joy and I am so proud of her. In her own little way she's trying to make the change easy for both herself and me. The little hugs I get when she goes off to class or to play with her friends on the playground are the little moments that will remind me she still loves me, still needs me. 

To the moon and back, I will always love you ❤️

You have to make it happen

I don't believe in sitting around waiting for things to drop in my lap. I believe on being proactive and working to get what you want. 

Currently I'm working to find a job. I'm trying to make things a little easier financially for my family. I want to get my foot in the door somewhere and work my butt off to get higher up. I want to make a career and have something to show for my hard work. 

I'm, dare I say it, almost 31 years old now. Yes there are reasons why I had to give up a career, damn good reason at that. My sons health came before a career. 

I had my foot in the door at Jackson Hewitt as a tax preparer and a vision of what that career would turn into. 

Then came Liam. He needed me by his size to care for him and be at his side and that was more important. So I have it all up. 

I feel sad I no longer have a career and have to start all over again. BUT I do not regret giving it all up for him. That's what mothers do. We give up our wants for the needs of a whole. I never thought twice when I got the call asking if I'd be returning to Jackson Hewitt. There was no need to even think about it. The answer was automatic "I'm sorry but my son was born very I'll and is NICU. He needs me". 

Now it's time to start all over. Everything I do, I give it my all. Whatever job I end up getting this time around, I will give it my all. I will work hard and pour all my effort into that job while I am there because this is what I do. 

You have to work for what you want in life. Things dont just fall in your lap in the real world. In the real world it requires blood, sweat and lots of effort to make things happen. 

So here I go, again, trying to make a difference for my family, and to take the stress off my shoulders. 

The Normal Things : Part 2

There was a time when we weren't sure there would be a future with Liam. When we weren't sure he would survive CDH, the repair surgery, his damaged lungs or anything else thrown at him. Imagining him older than he was or healthy was nearly impossible. 

Then there was a time after he survived CDH and all of what NICU offered, that we didn't know if he would have a future where he could do normal things. The future seemed sketchy so I tried to live for just the day, maybe even the following day if I felt brave. I couldn't see my baby  boy playing in a pool or attending races or riding a bike. I couldn't see him walking through the mall just taking in the sights. I always wished and prayed for it and kept hoping. 

You look at Liam today and it's hard to believe that tiny baby in NICU that was fighting for his life was him. 

But I've learned from my own past as well as Liam's life that the past does not always dictate the future. 

You can choose to let the past claim you and overtake you or you can choose what your future will be. 

For me happiness is all I need. 

In the past we never would have even thought of taking Liam to the races... Of ANY kind. Between the noise and the crowd of being potentially carrying viruses it wasn't an option. 

Now look at us:

We used to go to the mini sprint races all the time before Liam was born. We loved it. We haven't been since he was born. Last Friday night we decided it was time. We bought both kids eat muffs to cut out the noise just in case. Lanie has sensitive ears and wore her most the time.

Liam however is another story. He LOVES the sound of the cars loud engines roaring as they race. We kept putting the ear muffs on him only to have him take them off again. 

Liam has racing in his blood. He doesn't are what kind of cars are racing, he loves them all. 

I loved watching him cheer on all the cars. 

He even took his sister purple checkered flag to cheer on the race. 

Both kids had a blast. We can't wait to go again for the next race. 

Cheering is very hard work and Liam finally lost the battle against sleep during the last race. 

The normal things are what make all the medical appointment, meds and hospital stays bearable. They make life fun and give us reason to carry on. 

The Normal Things: Part 1

Life with a CDHer isn't easy. As a family, everything changes. Things we used to do before seize to happen. You take for grantit all the little things that make life fun and interesting:

Going to the mall just to walk around and window shop. 

Going swimming. 

Attending parties with friends and family. 

The occasional dinner out. 

Even something as simple as taking an hour to yourself to go grab coffee with a friend. 

When Liam was born with CDH everything changed. It's taken me awhile to realize how much the little things mean and how badly I need them. 

No this is not a post to rant and rave but to celebrate the little things. It's taken 2 years and 10 months now to get back some of those little things. 

We recently tried taking Liam swimming. We knew he loved water because he never wanted his baths and showers to end but we weren't sure how a pool would go over with our little lamb. 

Turns out he LOVES the pool. As of Friday he's been swimming 3 times. We only have two issues:

1) Liam has no fear!!

2) Liam's stoma isn't too fond of the chlorine water. He's good for about an hour and a half at max before his stoma gets seriously angry red and starts bleeding. After this we spend the whole day trying to keep him from pulling out his tube. Neosporin helps. This is an issue that I will be bringing up to his pediatrician and his GI at the next visits. 

Besides those issues, Liam is a guppy when he hits water. His natural instinct when he hits water and his feet don't immediately touch bottom is to kick his legs! I am very very happy about that. 

At the pool at our gym there is a kiddy side where the deepth ranges from a few inches to 2 feet. There's also a frog slide. Liam climbs up the slide on his own then slides down into my waiting arms. I let his body get halfway submerged and even then his legs just kick as fast as he can. 

I figure this is really great excersize to strengthen his weak little legs. Since we started taking him to swim he has slowly tanned. He's not dark by all means but a shade or two darker than ghostly pale. It's a bit strange seeing some color on his for in the past he's never been allowed outside long enough to tan due to allergies or he was always stuck in a hospital room. 

Was our pediatrician right when he said he thinks this is our year? That things would be different from here on out? (This was said in December)

Honestly? I believe so. 

He's eating.

He's active.

He doesn't get sick often. 

We can truely enjoy him being a little boy now with much less worrying about what could happen. 

The following pictures were taken Thursday (his second trip to the pool). I hope that in these, even though they we're taken at a distance, that you can see how much fun he was having and how much joy it brought me to watch him. 

Today we are victorious

Two days ago Liam could not eat out of pouches by himself. He would squeeze them too hard creating a huge mess. 24 hours ago he could not eat out of them unassisted and this frustrated him behind belief. 

However last night he went over to his Grandmas house for a few hours. When I went to pick him up he was walking around eating a fruit pouch like is was an everyday thing for him. 

The joy I felt was tremendous. There aren't even words to describe how proud I am of him. While we were at the grocery store today I was picking out many different pouches for him. He saw one with spongebob on it and asked for it. Can you guess what I said? 

"Sure baby you can have it"

The trip from the grocery store to home is about 5 minutes. In that short time he had drained the pouch of all it's applesauce and proudly handed me the empty pouch. 

A few hours later he wanted another one band of course I was happy to allow him to eat more. 5 minutes later he hands me another empty pouch! This time it was strawberry banana. 

If only you could have seen me dancing in celebration. It was quite a sight to behold. As a mom of a tube fed baby any bite of food feels like a small victory. To have him way two pouches in one day plus mow down on french fries is a HUGE victory. He's really doing it. There is hope for a tubeless future. 

Now if for some reason he never gets the tube out I will not be disappointed in him. He's doing the best he can and I will always support him. For now I am perfectly and deliciously content with these victories. 

"The impossible is possible. The word impossible even says possible"