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.