Hello Friends and Family!!
It has been awhile since my last post so I just wanted to send a brief update.
We are still on the Remicade infusions and the hardest part is the initial placing of the IV. There is no calming him down or talking him through it. We just have to hold him down and get the IV started as fast as possible. The nurses still try to calm him by talking him through the injection, but he already knows what is going to happen, that's why he is so upset to begin with.
A little over a month ago I felt like a horrible mother. I had been holding off on Cooper's Remicade infusion since I was convinced in my own mind that he did not have Crohn's Disease and we only needed to be treating him for the CRMO. After about 6 weeks his Crohn's symptoms came back and came back strong. I noticed them on a Thursday and could not get an appointment for the next Remicade Infusion until the next Tuesday. He felt terrible all weekend and was complaining of stomach pain and would not eat. I felt like such a shitty Mom, 1. because my son was in so much pain and it was my fault and 2. because my instincts were wrong and he does have Crohn's Disease. Luckily the infusion offers almost immediate relief.
So after this new revelation and my acceptance that he does in fact have Crohn's Disease, we saw his rheumatologist who has spoke with his GI doctor and they have determined Coopers main disease is Crohn's with the CRMO being symptomatic of the Crohn's. We will be treating him with Remicade for an indefinite period maybe for the rest of his life. We just received our most recent bill form his last Remicade infusion and our out of pocket cost each time he goes is $1,045. and right now we are going every 4 weeks. Anyone want to buy a kidney? LOL!! Just kidding.
Cooper is doing great on the Remicade. He is eating great, his walking and leg strength is the best it has ever been, he has lots of energy and seems to be and over all happier kid. I couldn't ask for more. So we are taking it day by day, infusion by infusion and this looks like our course in life for the unforeseeable future.
Thank you all for taking the time to read our blog and for caring for Cooper.
Love and God Bless,
The Cannon Family