Today Jim and I took Super Sweet Sophie to Children's hospital for her 3rd colonoscopy and endoscopy in as many years. Yea - she's 6 and this is just another day in the life. SUCH A TROOPER!
I know everyone thinks their kids are amazing and fantastic and beautiful and perfect but seriously my kid really is amazing and fantastic and beautiful and perfect! Sophie is a ROCK STAR.
Sunday we started a low residue diet with a little Ex-Lax on the side until Tuesday when we went to an all clear liquid diet combined with 32-oz of Miralax in 3 hours followed with an Ex-Lax chaser. That's right the girl didn't have anything but clear liquids all day Tuesday! She didn't complain once. I fasted with her and I was freaking hungry!! We had juice, water, sweet tea, a popsicle and some chicken broth and that's it!
We started the Miralax at 2p and had it complete a little after 5p. That's really hard for an adult to do but sweet Sophie managed to get it done with little complaint. She certainly didn't enjoy it but she did it and I think she is just the bravest little girl I know!
So, back to today . . . we arrived at Children's starving from lack of food but also starving for answers! Sophie has been on steroids for 2 years on and off and for 9-months straight without being able to get off without having severe UC symptoms. She's been on Aziathiaprine for 9-months with various other drugs in the mix along the way. All with no success. We decided to do the scopes today because even on the steroids right now she is losing A LOT of blood each time she goes to the restroom. Her blood work all looks good so we needed to figure out what is going on inside her sweet little body.
After the scope was done we met with Sophie's wonderful doctor and he showed us the the pictures of her colon. The inflamed area has moved from just the left side of her colon to the entire colon in a classic Crohn's Disease pattern. Her diagnosis has officially become Crohn's instead of Ulcerative Colitis. This is something that although we thought would happen eventually was still a very hard pill to swallow.
You can read about the differences between UC and CD here.
Sophie never complains but we have determined that although she thinks she feels ok she has most likely forgotten what good feels like. We need to change that.
At this point in our journey we feel like and Sophie's doctor feels like the only thing that will bring her some relief is to start her on Remicade.
We will get the results of the biopsies next week as well as the result of a TB test that she had to take before starting Remicade. We are hoping that the Remicade is the answer we have been looking for but we are also scared at the same time. It's a big drug to give to such a little girl and the warnings and side effects frankly scare the hell out of us.
Jim and I came together as parents today and made the decision that this is the course of action we need to take, this is what is best for Sophie, and we will have faith that everything will turn out the way it is supposed to turn out. As parents we are often faced with tough decisions and we can only do what we feel is best ---- not ever really knowing what the correct answer is or should be ---- this is certainly one of those times for us.
Keep Calm and Fight Crohn's . . .