- Joined
- Nov 12, 2011
- Messages
- 2,404
I almost hate rocking the boat with a good update, but I also know how important it is to hear about kids doing well and provide hope for others.
I'm happy to say DS has managed to stay out of the hospital for a whole year now. Woohoo! He's also coming up on one year of his GI declaring remission. Things really turned around after his second Remicade infusion and he hasn't looked back. Believe it or not, aside from 1 or 2 minor stomach aches and one tiny BM with some blood, he's had no other symptoms. He's on Remicade only (and a couple of supplements) and his labs have looked great with a minor blip here and there. In a year's time he's grown four inches (taller than me now!) and gained 17 pounds - and he's eating us out of house and home!
He started high school this year and so far has only missed a half day of school - much better than years past where he's averaged 20 missed days a year. He's currently writing a personal narrative essay for English class. Guess what it's about? He won't let me read it yet, but has been asking a lot of questions about his medical history. It's been a long six years!
We had a spectacular Make-a-Wish trip to Australia in August (and got to have dinner with Catherine and her daughter!). The whole MAW experience was wonderful and I truly believe it's had a positive impact on DS's outlook on some things.
At his GI's request, DS did see a therapist for a few months to work through anxieties, mostly a fear of pain and borderline PTSD. He was very open and receptive to listening and learning from her and has applied some of the techniques she taught him. He still hates needles, but at least is trying to work it out.
So, we're just going to ride the Remicade train as long as we can here. He's on 5mg/kg and at 8 weeks and hasn't needed any adjustments yet.
I hope and pray that all of your kids are either doing well or on their way to better days. :hug:
I'm happy to say DS has managed to stay out of the hospital for a whole year now. Woohoo! He's also coming up on one year of his GI declaring remission. Things really turned around after his second Remicade infusion and he hasn't looked back. Believe it or not, aside from 1 or 2 minor stomach aches and one tiny BM with some blood, he's had no other symptoms. He's on Remicade only (and a couple of supplements) and his labs have looked great with a minor blip here and there. In a year's time he's grown four inches (taller than me now!) and gained 17 pounds - and he's eating us out of house and home!
He started high school this year and so far has only missed a half day of school - much better than years past where he's averaged 20 missed days a year. He's currently writing a personal narrative essay for English class. Guess what it's about? He won't let me read it yet, but has been asking a lot of questions about his medical history. It's been a long six years!
We had a spectacular Make-a-Wish trip to Australia in August (and got to have dinner with Catherine and her daughter!). The whole MAW experience was wonderful and I truly believe it's had a positive impact on DS's outlook on some things.
At his GI's request, DS did see a therapist for a few months to work through anxieties, mostly a fear of pain and borderline PTSD. He was very open and receptive to listening and learning from her and has applied some of the techniques she taught him. He still hates needles, but at least is trying to work it out.
So, we're just going to ride the Remicade train as long as we can here. He's on 5mg/kg and at 8 weeks and hasn't needed any adjustments yet.
I hope and pray that all of your kids are either doing well or on their way to better days. :hug:
