When we arrived at Children's Mercy a year ago, we were better armed than the first time we were there. Our eyes were a bit more open, we had some time to do more research, we felt more capable and able to communicate our wants and needs with the care team there. We were still in for surprises.
Today, instead of sitting in a hospital crazy with concern about the health and well being of my child, I am helping plan a benefit and start a foundation which will help other families. How awesome is that? The experiences we've had with Landon will change the lives of others. You can read more about what we're doing and why by visiting our website.
I'm not quite sure I've fully accepted having a child with a chronic health condition. Honestly, I still believe he can heal and come through this. Call it crazy if you want. I call it optimistic. I call it faith. I call it our reality. Our Boy Wonder has shown us miracles happen. He has continued to amaze his doctors and makes Mama and Daddy proud every single day.
A year ago, he was dealing with a lot:
- Blood in his stools with nearly every bowel movement, which was upwards of 10-12 a day
- Insane steroid induced rage filled fits, which were uncontrollable and would last for hours
- He was on Prednisolone, Remicade, Sulfasalazine, several antibiotics, IV fluids and TPN (nutrition through an IV)
- He was not able to take his probiotics or any other natural things we wanted him on
- He had a feeding tube which was prepping his system for more scopes
- He was quarantined to his room due to a bacteria he had picked up from the hospital in Wichita
- He was extremely fatigued and did not run at all
That list could go on and on...
Today, the only pharmaceutical he is on is Remicade. He is able to take the perfect combination of vitamins, minerals and probiotics. He is happy (except for the normal 2 year old stuff!), healthy, healing and symptom free! He runs every where and has a ton of energy! Oh what a difference a year can make. It hasn't been a easy road but it's definitely been worth every single challenge we've faced and bulldozed through.
We are fully aware that things will be up and down with his health. Today, we celebrate the beautiful place we are in and are grateful beyond words for the strength of our Boy Wonder. He is determined to get well. I am thankful today to be with my boy, at home, even though we're having a whole different set of challenges! I'm thankful the challenges we are facing now are the same as any other parents of a 2 year old. I'm thankful for all the progress Landon has made in the last year. I'm thankful for his team of doctors, nurses and support system who have helped make his miraculous healing possible.
The top 2 photos are January 30th, 2012 The bottom 2 photos are January 26th and January 30th 2013 A MUCH healthier boy! |