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! 

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. 

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.}

Check out our blogs Facebook page http://www.facebook.com/MommyConfessionalinmyshoes 

Follow Liam's day to day journey in his Facebook group http://www.facebook.com/groups/LiamMichaelBryant 

Shedding Light

This article is so very true. Parents of a special needs child (sometimes even whole families) are exhausted almost all the time, mentally and physically and emotionally. Parents of a SN child know more about their child's diagnoses than even the doctors. I have done so much research on Liam's diagnosis than I can even begin to explain to you. Every month or so I re-research everything on the off chance there is new information. SN parents minds are always busy. I know mine is. "What time does Liam need a time feed?" "When is his next dose of meds or breathing treatment?" "What PT aspect do I focus on today?" "What appointments does he have today or comming up this week?" It's never ending. My brain is always consumed with thought on what my son needs. It is so consumed I forget things for myself. Since last Friday I've missed two doctor appointments for myself. Pretty important appointment to get results of an ultrasound and X-ray I had. I forget to call my friends and family back. If it has nothing to do with Liam's SN I forget to do it. He is the most cared for person in this house. And I know that it's not always fair. But it's what it is. The most important one to be (yes even more than being exhausted) is that SN parents are lonely. It's a very lonely journey. I went through 2 years and 9 months so far (that's how old Liam is) without having anyone to talk to. No one wanted to be around and see my son so sick. I understand they didn't want to experience that but did I want to experience that? And did anyone once think how it was for me to sit alone in NICU or any other hospital stay? Did anyone think about the phycological damage it did to me to want my son almost die on many occasions or to have him turn blue the very first time I held him because he wasn't getting enough oxygen? Nope. It never crossed anyone's mind. I'm not whining and complaining but sharing a truth that is so taboo to so many out there. This is the life. My life. Liam's life. I'm shedding more light on this article by sharing my thought, feelings and experiences. The only constant through all this was Liam. He was the only one always there but he was the one who was always sick. I would sit in his hospital room for hours when he's sleep and just stare out the window wondering "why us?" And "why do I have to do this alone?" That hurt almost as much as watching Liam fight for life. Being a special need mom I smile to hide the pain. No one wants to see you depressed, exhausted, or know anything about this. We have more bad nights that someone with a newborn. Emotional we can be unstable. I hold it together with my fake smile daily because when you can't you get criticized. You wear sweatpants out in public to pick up your older child from school, don't have the energy to put on enough make to cover the dark circles under your eyes and the world comes crashing down on you. This is life. Real life. http://m.voices.yahoo.com/5-things-know-parents-children-special-11493864.html

#specialneeds #parent #kid #mom #cdh #chroniclungdisease #gtube #tubefed #failuretothrive #gastroparises #life 

      {photo of Liam today in the car. He took his shoe and sock off and put all his toes in his mouth. Why? Because he was bored waiting for sister to get out of school. This is life.}

Turning Of The Tides

We may be getting our hopes up here BUT we think we are at a crossroads here with Liam and oral eating. It's a turning of the tides. A huge step. 

Liam hasn't been tolerating his continuos for about a week now. I've tried lowering the calorie content and lowering the rate and it hasn't worked. He wakes up screaming in pain and this continues until I stop the feed. After the feed stops he sleeps without waking up at all. 

I tried Milk of magnesia in hopes that it would calm his stomach but it did nothing. I tried Motrin for pain but it only did so much. 

The last couple of days Liam has been making up the calories by eating them! Yes folks I said EATING!! 

So Liam hasn't been gaining it loosing any weight on his formula feeds. I am extremely curious to see if he gains weight eating. I've been packing his food full of calories where I can. Let me share with you what Liam ate yesterday:

(Pic from Saturdays breakfast because I could find Sundays breakfast pic. Sat breakfast was home style hashbrowns eggs and biscuits and gravy)

Sundays breakfast was eggs, sausage, pancakes and syrup. 

When I make his scrambles eggs I add lots of butter. Same for the potatoes. It adds extra calories where I need it to be added and I noticed he eats more when I use lots of butter. 

For snack he ate an entire package of fruit snacks. That's 80 calories in that one sitting. I discovered strapping him I to the high chair he was more. 

Before dinner he wanted apple suace. He ate all this apple suace and a few peices of cereal. 

For dinner we went to Casa Grande. Liam ate lots of chips. I know I gave him 5 and I'm sure his uncle, aunt, grandma, papa, and cousins gave him more. He also ate a French fry, the cheese off 4 tacos (everyone is always more than willing to share their food with him knowing he needs to eat), some taco meat and a few bites of beans. He also tried cutting his meat and cheese. It was the first time he held a knife and I was shocked he knew what to do with it. 

After dinner we had desert at basken Robbins. I shared my ice cream with him. It was called tax crunch and had lots of chocolate in it. He ate 15 half spoon fulls. Every time he asked for more I was more than willing to oblige. 

As you can see yesterday Liam ate ALOT.  I am so proud of him and am praying and hoping that he has gained weight eating and that maybe we can start discussing what to do next with his GI. I know it's always 1 step forward and 2 steps back but still just watching Liam eat brings me joy. 

Choose Your Battles

Having children has taught me to pick my battles. Especially with Liam. Do I fight him when he only wants to eat Doritos or do I rejoice in the fact that Atleast he's eating something? It's not worth the fight to say "no you can't eat that" because it defeats the purpose of getting him to eat. 

Do I let Lanie wear mix matched socks or fight with her to find a matching pair? Fighting with her only causes emotional distress for both of us and who cares if her socks don't match when you can't see them anyway. 

#makeitcount #chooseyourbattles #cdh #cdhawareness #chroniclungdisease #asthma #gtube #tubie #spoonie #gastroparesis #malrotatedstomach #biotinidasedefficeincy #chronicpain #makingthebestoflife

Gastropharisis

Liam's been diagnosed for since he was a few months old with Gastropareses. 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 Gastroparesis? How does it affect you? 

It's not always clear why someone has gastrophareses 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 gastroparesis?

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 gatroparesis. Changes to diet it meds can sometimes help. Gastroparesis 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 gastroparesis 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 gastroparesis. 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 gastroparesis 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 gastroparesis 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 gastroparesis 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 Gastroparesis but Gastroparesis does NOT have me"