Standing Tall

(Taken September 9th, 2012)

Yea I know he's crying but I took a moment to capture this moment in a picture. What appears to be nothing out of the normal to you, was something huge in our world. The aftermath of CDH was tremendous. Sure he flew through NICU at a "mere" 48 days when he wasn't expected to make it but we lived with the devastation of CDH every day from the moment he was born. 

So here is my son, 14 months old at the time. Just a few months prior to this, right before his 1st birthday, he learnt how to sit on his own. He was still wobbly and fell over more often than not, but it was a huge feat for him. Then at 14 months old, he graced us with another trick and pulled himself into a standing position all on his own. 

We were in the hospital and I had "mistakenly" taken a moment to use the restroom. Because of this he had to be put back into the crib. He was fine until I got out of sight for longer than 30 seconds. When I didn't show my face after his grace time, he started crying. Now remember, Liam still did not talk. I rushed out to find he pulled himself into a standing position. I then started crying. 

I snapped the picture then ran to his side. I hugged him, but left him standing because I couldn't get enough of this wonderful sight. The nurse walked in to find us both blubbering away. I started laughing through my tears and Liam followed suit. Soon the tears were gone and it was all laughter. I explained to our nurse what had just happened. She excitedly told Liam what a good boy he was then explained how we forever more, would have to not only keep the bars all the way up at all times, but put a hood on the crib to prevent climbing. I laughed. Liam's great feat resulted in a full on cage to keep my monkey boy in. 

Some of the after effects of CDH were low muscle tone, delayed development, poor fine motor skills and more. Being in the hospital as much as he was, also affected his development. Liam spent more than half his life stuck in a hospital. If you were to adjust for that, he would only be around 2 years old. Because of hard work and determination, he began catching up. It took daily activities at home but we made it fun. By the time he started preschool in 2015, he appeared "normal"*. He was running and jumping with the other kids. He couldn't keep up, but he tried with all his might. 

*The term "normal" here is a realative term. I know that normal isn't really a thing so when I use this, I'm referring to health wise. You have the "normal" kids who are healthy. Then you have the other kids who aren't healthy, like Liam. When I say things like "we wish we had a normal life" to referring to the fact that we wish for healthy. And now that we've lost Liam, our lives are just even farther from normal as you can get. 

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.