Landon's Treatment

Let me start by saying, this wasn't an easy post for me to write. I have hesitated all weekend because this is very personal. However, with vulnerability also comes an immense amount of support, which so many of you have selflessly given us. We have people ask about Landon on a daily basis. I cannot even formulate words to describe how it makes me feel as a Mama to have so many people who genuinely care about our little darling. Here is a small glimpse in to one of the ways we are helping Landon on his journey to prolonged optimal health. 

Every 8 weeks, we make the 3 hour drive to Children's Mercy Hospital for Landon's continuing medical care. We have been doing this for almost 2 years now. In the beginning we went every 2 weeks, so to be at 8 weeks in between is great! Landon does really well during the trips there and back, which is a true blessing. We have movies for him to watch, books to read, songs to sing, crayons and coloring books. We also have snacks. Lots and lots of snacks. 

Upon arrival, we head to the Outpatient Infusion Center. By this time, he is usually asking one question multiple times, which is, "Will it just be one poke?" Meaning, will they get his IV inserted on the first try. We reassure him and say our prayers that it will indeed, just be one poke. These days, it typically is. The past hasn't been so lucky but we're in the now kind of people so we choose to remain optimistic. 

We head in to the procedure room where Landon gets his weight, blood pressure and temperature checked. He always wants to sit on either Mommy or Daddy's lap, he gets to choose. Then, it's time to insert his IV. Every time I silently say a prayer that it will be smooth and easy. Well, as easy as sticking a 3 year old can be anyway. Honestly, Landon does amazingly well. I guess he's somewhat getting used to it. After the line is placed, we move in to the room we will spend the next 3ish hours in. They give him 2 different oral meds to help if he were to have a reaction during his infusion. Again, I silently pray, this time for no negative reactions. Then he gets hooked up to his IV pump, chooses a movie, orders food and waits as the medication flows through his tubing in to his veins. Sometimes he falls asleep and others he stays awake the whole time. He sits with me, as we chat and pass the time. 

Sometimes we also have a visit with his GI doctor, but this time we were able to forgo that part. He is doing so well that we only have to see her every 4-6 months.

Loaded up and ready to go. Yes, he is eating a cookie at 8:30 in the morning. 

Watching a movie as we cruise along.

Nearly everything he needs! Minus the snacks. This is a rare photo when he isn't eating.

Checking in for Landon's infusion.

Let's see how much he weighs.

Sitting with Mama while getting his blood pressure checked.

Our nurse (who is amazing!) is warming his hand to help when it's time to insert the IV.

The IV is going in. As you can see, this kid is brave. 

Success! One poke and it's in! Not a single tear.

Here, his nurse is drawing blood for the labs he will have done. 

Putting Landon's blood in to the appropriate tubes.

Landon is inspecting the IV line. He approves.

They always take 2 tubes of blood to send off the the lab. They check many things but we're always most concerned with his hemoglobin, SED rate and protein levels.

After the IV is placed, we move in to our room, where Landon gets to choose a movie to watch. This time he chose Cars.

Tiny, sweet hand.

The bag on the left is his medicine, the one on the right is saline to flush his line at the end.

Landon's choice for lunch was brown rice, cauliflower and blueberries. YUM!

Chillin' on Mama's lap.

In the van leaving the hospital and he was crashed within minutes.

The trip we made Friday was one of celebration. Landon has officially been off Prednisolone (steroids) for a whole year! YAHOO! His labs are all in the normal ranges, he's retaining all of his nutrients and gaining weight. He's doing remarkably well and continues to amaze his doctors with all of his positive progress. We have also been able to add in a lot of new foods lately, which makes him so happy. At one point, not so long ago, he was limited to about 5 different foods. Can you imagine only being able to eat 5 foods? Tough stuff. 

Landon has been quite the inspiration through all of this. He is resilient. He is tough. He is brave. He is strong. He is special. He is changing this world and the way the medical profession looks at the treatment of Inflammatory Bowel Disease.   

Last night we went out to dinner. We were able to order all of his food straight off the menu. He chose rice, broccoli and sweet potato. Several months ago we were only able to do that at one restaurant. Now, we can go many places where he is able to eat off the menu. As he was eating last night, he discovered onions in his rice. He hasn't been able to have onions for the last year due to the inflammatory response they would cause in his body. It was so nice to be able to let him eat those onions and not have to pick them out. Actually, it was kind of funny because HE was picking them all out and devouring them! He also got to have peanuts yesterday, which is another thing we've avoided for quite some time. He LOVED taking them out of the shell and would have eaten the entire bucket if we would have let him! As I watched him, smiling while eating all of those nutritious foods, I felt tears begin to sting my eyes. Tears of joy and gratitude. Tears of celebration. 

We ARE celebrating. Landon is kicking IBD's ass! I am in a place of gratitude for all we've been given. The road has been rocky but through it all, it's been Landon who has kept me believing. Every small step forward (and even sometimes those steps we took back) was just enough to keep pushing. 

Just. Keep. Moving. The rewards are endless. The very best reward is my healthy Boy Wonder.

Re-purposing Like a Boss

It's project city up in here this weekend!

Painting chairs and a shelf and putting a nice poly finish on everything! 

Whew!

What have you been up to? Have you been out enjoying these last couple of gorgeous days?

Photo Dump!

Bathtime!

Party time, dairy free style! 

Getting our shop on! He's kind of a big deal.

Patiently waiting for our movie to start.

Bathtime has gone from hanging out in the bubbles, to building crazy cool contraptions! This kid has some creativity, I'll tell ya!

Wild Child!

As I was trying to capture his crazy hair, he thought it would be hysterical to close his eyes every time I snapped a picture. He was belly laughing!

Road trippin' with a few of my favorite ladies! Mini-vans are good for more than just hauling kids around.

It was time to give the ol' wagon a scrub down. He wouldn't let us help at all. Get it, Kid!

Sweetest pink lips ever!

Sweet Louis, mid lick. 

He gets incredibly excited anytime we see a UPS truck. Imagine his excitement when he got to actually stand in front of one! The driver offered to let him climb inside and his response was, "No thanks. I'm good. But Thank You for offering!" His (mostly) good manners make this Mama proud!

Gluten Free Friday - Why?

I read an article over on the Huffington Post the other day, which talks about gluten intolerance and whether or not it's just a fad. It was interesting and got me thinking about the reasons we choose to be gluten free. 

Here's the thing. Not everyone is gluten intolerant. Many people eat gluten every single day and are seemingly fine. Or are they? It's not up to me to tell others how they should or shouldn't eat. I'm just here telling our story and sharing how removing gluten has benefited us.

We didn't decide one day to become gluten free because of some kind of fad. It was something we felt was medically necessary in order to help our son heal after a diagnosis of ulcerative colitis in 2011. We did a lot of research then enlisted the help of a medical doctor who specializes in dietary needs and nutrition. We still see her every few months to make sure we're on track and up to date with what is best for Landon. A big factor in his healing was removing wheat, which causes high levels of inflammation in his system. For him, inflammation in his intestines is a very bad thing. If a product contains wheat, it usually contains gluten. For Landon, we chose to remove all grains with the exception of rice, as his little body was in the biggest part of it's healing process. Rice is still the only grain he gets to have, with the exception of a bit of organic cornmeal which is in one of his breakfast cereals.

For myself, removing gluten has a direct impact on how I feel physically, mentally and emotionally. I know, it may sound crazy, but it's totally true. Wheat is a big one for me that causes a lot of physical discomfort. Every single time I remove wheat and gluten from my diet, my aches and pains go away completely. I also sleep better, have more focus, better energy and am all around a happier person. I often wonder if the large amounts of wheat and gluten I ate during my pregnancy with Landon was passed along to him in utero, causing the intolerance's he now has.    

I have several friends who have Celiac Disease. For them, an exposure to even the tiniest amount of gluten means days of sickness. Trust me (and them), it's not fun.

What I know for sure is gluten is incredibly hard to digest and can truly mess with gut flora. Probiotics are a staple in our house and we don't go a day without them!

Here's an interesting article discussing ways gluten can be detrimental to your health. Here's another article which highlights all the different levels of sensitivity. I found both of these to be helpful and interesting to read.

Happy Gluten Free Friday! 



  

Gluten Free Chocolate Chip Pumpkin Muffins

Yesterday morning, as I was getting breakfast ready for Landon, he asked for muffins. We didn't have any so I promised him we would make some together when I got home from work, which made him super happy. I like it when my kid is happy.

We decided to make a variation of my Almond Flour Pumpkin Muffins. I didn't realize how much I had changed ingredients until I went back and looked at the original Pumpkin Muffin recipe. So, essentially I have a brand spankin' new one for you!

Gluten Free Chocolate Chip Pumpkin Muffins

1 can of pumpkin puree (less a couple of tablespoons for your pint sized kitchen helper)

1/4 C raw butter

3/4 C all natural applesauce

4 eggs (we use local or at least free range/cage free organic)

1/4-1/2 C raw local honey (use more or less until you reach your desired sweetness)

2 tsp organic apple cider vinegar (we like Bragg's)

1/2 C almond milk

2 tsp pure vanilla extract

1 C rice flour

4 C Honeyville almond flour

2 tsp baking soda

2 tsp ground cinnamon

2 tsp ground nutmeg

1/2 C chocolate chips

Add all wet ingredients to a blender and blend for approximately 2 minutes. Blending is a key step in the process because it mixes everything to create a smooth, airy batter. Add in your dry ingredients and blend for another 2-3 minutes, stopping to scrape the sides of the blender halfway between. Transfer everything to a bowl, add in the chocolate chips and stir by hand until everything is incorporated. Fill your muffin tins 3/4 full and bake for 24-28 minutes at 325 degrees. This recipe makes 24 muffins. 

Variation for those with nut allergies:
You can use approximately 2 cups of coconut flour in place of the almond flour.

Variation to make these grain free:
Use 1/2 cup coconut flour in place of the rice flour. 

P.S. There are no photos of our muffins when the came out of the oven because we were too busy devouring them.

He's ready to get this muffin party started!

Raw local butter is a new addition to this recipe. It added a really nice flavor as well as moisture to the finished product.

Dairy, nut and soy free chocolate chips! YUM!

I measured the almond flour then Landon carefully added it to the wet mixture.

We usually eyeball the amount of honey, which Landon enjoys because he gets to squeeze it all by himself!

In goes the applesauce.

Adding almond milk gives the muffins a moist texture.

Landon's treat at the very end is a few chocolate chips, which he LOVES!

Happy Birthday, Mama!

Today, we celebrate the woman who gave me life, my Mama!

She is one of the most generous, loving people in my life. She's always been my biggest cheerleader and continually encourages me to be the best me I can be!

Many others call her Mama too, whether by blood or by choice. She openly accepts and loves others in a way that is unique to the wonderful person she is. 

She has a very special connection with Landon, which just warms my heart. 

Last night we celebrated with her with dinner at our place. Big THANKS to my sis, Shannon, for getting everything together on such short notice!

When I was a kid, I remember thinking I had the coolest Mom in the world. She was always so spunky, energetic, fun and positive! One of my favorite things to do was to raid her closet and put on her clothes. She never got upset about me getting in to her stuff. When I emerged with her shirts, shorts and leg warmers on (which were all too baggy!), she beamed with pride as she told me how great I looked! I heard the words "I Love You" on a daily basis and I never doubted her love for a single second. As a single Mom after my parents divorced, she worked incredibly hard to ensure my life didn't have to change too much. Even when she was struggling with her own health issues, she never complained. She still rarely complains, although I know she has pain on a daily basis.

Mama, Thank You, for being the gorgeous soul you are and for loving those around you unconditionally. We are so fortunate to have you in our lives!

Love and Writing and a VERY Special Poem

I come from a family of writers. My Mom, Sister's, Aunt's, Cousin's; they are all gifted writers. I even see this gift in my now college age niece and nephew. It's truly an awesome thing. My Grandmother wrote poetry. Her sister, my Aunt Cleo, still writes poetry and even penned a book about her life. She has kept a journal for many years and always encourages those around her to do the same. Her daughter, Marsha, also writes and publishes her works on line. More on that in a moment.

I have written numerous journals in my life. Now, I have this blog. For me, writing is cathartic. I write when I'm happy, sad, unsure, mad, feeling vulnerable, excited...you name it! It's most definitely therapeutic. Plus, I am making a record of my life for my kids and future grand kids. 

{I feel like this back story is necessary for better understanding of what I've written below.} 

When Landon was at Children's Mercy the first time, we were sad and lost. Although we had a diagnosis at that time, his health was still declining and we had no idea what would ultimately happen with him. We were lonely. When we were hospitalized in Wichita, we had visitors every day. Our friends and family would come to chat, to check in on Landon, to check in on us, to give us hugs, to hold me as I sobbed. They brought food and reassured us that we weren't alone. Sometimes, they just showed up and sat silently with us. The simple presence of a loved one, sitting next to you, brings an immense amount of comfort. When we arrived at Children's Mercy in Kansas City, we were alone. We didn't know that hospital, everyone we met was a stranger and we were terrified. Not to mention, Landon was quarantined to his room the whole time so we weren't even able to get out and enjoy the play room or even walk the halls.

As we were sitting in his room one gloomy afternoon, we heard a knock at our door. In walked my Aunt Cleo, Marsha and her husband Steve. We didn't know they were coming and it was the most warm, comforting surprise. We chatted a bit, sat together and ended our visit with a prayer from Steve. Our visit from them put a bright spot in a very dark, sad day.

As I told you previously, Marsha is a writer. She and I keep in touch through Facebook and we also make a point to visit them when we're in KC for Landon's continuing care. She's one of the sweetest, most kind individuals I've ever met. Today, I received a message from her with a link to her most recent poem, titled Love for Landon. Please take a moment to read it. I am so touched by this act of love and kindness. It's a beautifully written piece and something I will cherish forever. Thank you, Marsha, for sharing your gift with all of us. 

Thank you all for taking the time keep up with my journey here. I greatly appreciate all of the love and continued support we are so generously given every single day.