Just wanted to add an update here-Izzi is still doing great after 16 months on Tacrolimus. She has very few symptoms and gets monthly labs. Wishing you could all post here as well...(((HUGS)))
It brings tears to my eyes to see people going out of their way to help. That is an awesome school.Not really a success story, more of a snippet...
DS came home upset because his gym teacher made him go back in the locker room and put sunscreen on since they were going outside today. I did a happy dance! It means the gym teacher read his 504 plan AND didn't take any whining from DS.
Also found out he got pulled out of science class to go see where they are going to keep his special "germ free" keyboard for use in the computer lab and the library. The librarian said she'll spray it down for him every day.
And then, at the football game I sat next to his geography teacher. She said all of DS's teachers were called for a meeting to specifically go over his 504 plan and to consider ways to make his last year of middle school a positive experience since the last two years have pretty much sucked because he'd been so sick. I just about cried.
It takes a village, right?
Congratulations! Enjoy it all!We saw the GI on Monday and I just got a copy of his notes in the mail. Under "Current Health Status" is THE word we've been waiting two years for.
This is the first time it's ever been in writing. That makes is official, right? Just like everything you read on the Internet is true. I'm not counting my chickens before they're hatched... he has two more weeks until his next infusion... but I am getting the nest ready
It's great that she's broke that 100lb barrier, Jaedyn was back down to 94 last visit. She's 5'7 1/2".5 foot 6 1/2 or 7 inches...she bounces up and down depending on who measures her and how straight she stand:ylol2: Weighs 104 or 105 pounds depending on if she eats breakfast before her appointment:rof:
This thread might need a bump for our newbies.
We're going on 2 and 1/2 years of remission and fairly normal life with just a few minor bumps along the way. Spent most of that time on remicade every 8 weeks just recently we have dropped to every 6 weeks.
He is looking forward to senior year of high school, was just elected Senior class vice president, just finished baseball season after not making the team last year. It took him a year of working out and catching up on development. He works a part time job, is doing well in school.
He is now 6', we were hoping to hit 5'6"-5'7" prior to Remicade. Still really thin but so is his brother so that just may be natural. He is busy planning his future with barely a thought towards Crohn's.
I hope if you have reached this stage you stay there for a long time and if you're still struggling you get there soon
AmenThat must have been a whirlwind surprise for you Dusty...amazing news.
You are a wonderful mother bringing your children through such an awful condition but allowing the freedom to grow up to independence.
Congratulations.....to you and the happy couple...may it be a lifelong success.
Great news. Thanks for sharing.Seems like it's been too long since anyone has posted in this thread so I thought I would give it a "bump"
Jack is one month shy from hitting his 3rd anniversary of starting remicade and continues to do better than we could have hoped. He is 3 months away from 7 years since diagnosis and I honestly thought we would not be at this point.
He is in his senior (final) year of high school and halfway through it at that. He is more concerned about world and local issues than his disease, mostly because he barely thinks about it at all anymore usually only the day of an infusion. He did write his college essay with a nod to crohn's but only in that it has given him the opportunity to discover his leadership skills through mentoring others with crohn's and acting as a leader at camp.
We are no longer worried about his growth he is just a hair over 6 foot tall, I think we were all hoping he would get to 5'9 since he was just a smidge over 5' at the start.
Jack is looking forward to going to college next year and hopes to someday be a pediatric GI.
We had discussed switching to humira for college since it would most likely be easier to do in college and not have to find someplace to do infusions (our insurance wants them done at Walgreens/Option Care infusion centers of which both colleges he is considering there is not one near) but I think we'll just figure out and continue on with the Remicade as long as we can.