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. 

Hush Little Liam

Liam is having a bad night. He keeps waking up letting out cries. He's uncomfortable and in pain due to his feed. I walked to his bed and he's laying there holding his stomach. Today at the GI when I told her this she thinks it's because of all the antibiotics he's had in the last two months over "gtube" infections that when she saw the pics of she said they weren't infections just irritated. I didn't really agree with her considering the pedi said infection and even Children's said infection on a few. Anyhow she said usually within 3 days the antibiotic are pit of your system but that with Liam he could be having longer lasting affects. She said wait it out a few days more and see what happens. I told her I was giving Motrin and Tylenol to try and get him comfortable at night but even that wasn't helping and only stopping the feed helped. Anyway so here I am at 2:47 am sitting on Liam's bed rubbing his back as he cries put "mama...mommy" every few minutes knowing there's nothing left I can do but stop his feed. So I do and watch as every minute that passes he gets more comfortable and less whinny. I sit here and listen as he calls out "mommy" a few more times then curls into my side for cuddles. I rub his curly haired head and whisper "shh baby. It's ok momas here" and hold him close. 

I sit here and I wonder "how does he do it?"  How does he have to strength to go through what he's been through? How does he deal with the uncomfortableness and the pain and still smile and laugh? How does he have the energy? It seems he's awake and tossing and turning most nights yet during the day he's hyper and happy. I only wish that after these sleepless nights I had that kind of energy. I sit her staining at his now snoring face and love him even more for his strength knows no bounds. His love is everlasting and unconditional. He has a passion for life and a yearning for learning. This little boy has touch so many lives, changed so many lives by just being him. Hearing his story only magnifies the live complete strangers have for him. This little boy who will have left a huge footprint on this world and he's mine. I get the honor of holding him and loving him daily. 

And yes again I've gone off track but that's because my son is now peacefully asleep just 10 min after stopping his feed. I look down at his peaceful sleeping face and thank God he's mine. I look at him and think "he's perfect, scars and all. Just absolutely perfect". Because he is. He couldn't be the Liam we know and love today if he hadn't of gone trough the journey he's been through. I get to spoil him with foods and candy whenever he wants it just because of his slow weight gain. His wants are simple. Food and cars and he's a happy camper. Medical needs aside he's a simple boy who doesn't ever ask for much. He will choose a $1 hot wheel or matchbox car over a $40 toy any day. Give him a bag of durritos and a sippie cup of water and he's a happy boy. 

I'm going to stop rambling as it's 3:10 am now and end with a picture... Or two from today. 

{pic below of the nurse at the GI clinic taking Liam's vitals. Liam whose been through this millions of times is just sitting there patiently waiting and bored out of his head. She took longer than he was willing to give her to listen to his heard so he started laughing and playing with her stethoscope. }

{pic below is of Liam posing for a picture with Nemo. He heard he was getting the Nemo room today so he ran as fast as he found in his squeaky sandals to get there. All the nurses smiled at his cuteness and laughed over his silly shoes. Once in the room I told Liam to find Nemo and he searched until he found Nemo hiding behind a chair which he pushed at until he could squeeze behind it. I moved it so he could "play" with Nemo. I asked him where's Nemo? And he point to him then rambles on while staining at Nemo. Finally Liam declares "Nemo paint mommy". What a jaw dropping moment. Yes baby Nemo was painted on the wall. "Hmm paint" he said then laughed. We knew Liam was smart by how he figured out puzzles and problem solved but I never realized how much he actually caught on to things. I always thought he was in his own little world most the time but I was severely wrong. He may be slow at the talking game but this boys brain has been in the game learning and soaking it all in like a sponge.}

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