10 weeks infusion free!

Lets back track some...

10 entire weeks ago, we made the decision to stop Wesley's enzyme replacement therapy.
He was too upset. He was fighting more, which he has always fought, but this was different. This was panic. He was depressed. He did not play. He did not speak. He did not sign. He did not want bites of his favorite foods. He was terrified of every new person that came within 10 feet of him. If I shifted my weight on the hospital bed it was sheer panic and instant hysterics. He had become terrified of almost every one and every thing. His light had faded. We were thinking disease progression for the things he had stopped. This just happens as time goes on. Faced with adding another nurse to help hold him down while he thought he was dying or stopping treatments...with careful thought and full support of his Dr's we said no more. No more treatments because they were taking his happiness away from him and giving him such bad anxiety that it was effecting him outside of the hospital. The fear had seeped its way into every area of his life and that is no way to live. We know better than most that life is too short for that.


When Wesley was first diagnosed Wesley's Dad and I decided that we wanted quality of life over quantity of life at all costs. That is what we had in mind when we chose to stop. His life will be so short we want it to be as good and as painless as possible. We signed him up for Concurrent Hospice care a week later. Hospice care for a child is different than hospice for adults. He can still can and does receive speech, occupational, and physical therapies. They treat illnesses with antibiotics as needed. We have a nurse who visits us once a week, she is an amazing woman. She refills Wesley's prescriptions and listens to his heart. I can text her with any of my concerns and will come out to our house if Wesley is sick or hurting. She does all the pediatric patients for our area and I can tell she really loves children. She always says she doesn't come here to talk about death, she comes to help Wesley have an easier life until then. She genuinely enjoys spending time with him and checking in on him and Wesley can tell. Wesley doesn't seem to mind her, he drags her outside and around the house to look at different things and convinces her to give him snacks. He is even comfortable enough to fall asleep around her if I am holding him. Wesley does NOT fall asleep around anyone. She fits well with our family and I am thankful to have her.

Wesley enjoying the warm weather!

The difference in Wesley since we chose hospice has been great. Not all of it is happy, he is more tired. His pain is worse but those things can be medicated with an afternoon naps and pain medication. Wesley is happy, there is light in his eyes again. He laughs through out the day. He uses his words and started using his sign language again. He eats more by mouth, he asks for sandwiches and juice; he also actually eats and drinks them now. He ate a pack of graham crackers the other day... it has been so long since he wanted graham crackers. He is no longer having crying spells through out the day. He is playing with his toys, he has been running around our yard and kicking a ball. He has even been jumping on our trampoline. He even has started rummaging through cabinets and the fridge again. Our family has noticed a difference and even my friends who see him regularly. My friend, who has children that go to therapy where Wesley goes, told me that she is so happy for him and us.. he is the little happy boy she met three years ago. That seriously meant the world to me, because these changes are not just my imagination. He is a different kid now that he no longer has to go to infusion. This is the quality of life we want for him; joyful, magical, and full of light.This is how I want my daughter to remember her brother. I can not believe we are 10 weeks infusion free already and the difference it has made in Wesley's life. I am so glad we said no more and never looked back!!


As always, thank you so much for your continued support and prayers. We feel them and they make all the difference!

Have a brave heart,
Wesley's Mom