Gus received his 5th dose of Stelara today.

Everything is looking pretty good. He has moved out of just nibbling food to wanting to eat. He is going through a learning curve on what he can really eat. LOL Before his attitude was "if I can't eat very much, then it's going to be something I REALLY like." Now, those same foods aren't as appealing and don't even taste as good anymore. He still doesn't eat a lot at any one sitting, but he does want to eat again, and again. More small meals seem to be what he is interested in these days.

Bottom-line...I am happy he is feeling good and that he WANTS to eat!

5th dose in and Gus is doing GREAT! He is feeling good. He is eating better than he has in a long, long time. He is pain free.

We even went to an extreme trampoline facility tonight (you know bounce across the room and off of the walls, etc...) and he had a great time, sweaty, but great!

NICE!!!! That is great news for Gus ;). Just be a kid again and do what kids do! It's the best. We have a GI visit tomorrow, and the main thing is to talk about how much longer remicade will work. I have a feeling that Will is beginning to build up a resistance, though he is at 10 weeks, which I know is good, but the doc might move it up to 8. I don't know---we will see. He doesn't have pain issues that I know of, it's mostly extra bathroom trips and a little blood in stools towards the end---and some nausea. He doesn't complain.

He's a glass half full kind of kid and is going to take his first piano lesson tomorrow since he was in 5th grade (he's 17 now). I'm a flute teacher and always wanted one of my kids to like music, and he (with all the music genes) has finally admitted he loves classical music and wants to learn again. SIGH.....it's not too late (I hope!) His old piano teacher will love it :) So....it's experiences that makes us and our kids happy, not things. And if we can get them to feeling good, then the sky is the limit.

loves

Hope all goes well at the GI visit. We didn't know when the Remicade stopped working until more (new) strictures were discovered. His labs were good. He was feeling good. If it had not been for another pill cam study (and the camera getting caught in the stricture) we would have never known. Gus was always on an 8wk regimen. When Remicade works, it works sooooo well. I hope Will able to remain on Remicade!

Nice about the music. We are looking at music and gymnastics for all four kids over the summer. Will see how it goes.

We are half way through summer and Gus has been doing really well. Feels good. Eats good. Even thinking about trying out for volleyball when school begins in September! That alone is an amazing indication of how well he feels!

Small "blip" this week, though. He said he anus was really bothering him. This is new. Usually his disease is active between the duodenum and the terminal ileum. We have a medicated enema that seems to be working. I am praying that this is not an indication of active disease. If his Crohn's is active, his doctor will most likely stop the Stelara. I don't know what we will do if that happens. It seems like there isn't anywhere left for us to go...until the next Crohn's med is approved.

Gus still seems to be doing well on the Stelara. I can't believe I just wrote that!

He made it through the entire first quarter of school with NO HOSPITAL DAYS! He even felt well enough to try out for the middle school volleyball team. He didn't make the team, but they kept his as the team manager. It has been wonderful for him to be a part of something bigger than himself.

Our GI doc did an upper and lower GI scope a few weeks ago. No signs of inflammation, ulcers or new strictures. Whew!

Gus does still have a few pain episodes. They are still pretty few and far between and don't last long. He is doing so well, I think we will most likely make it all the way through the second quarter of school without any major events too.

I'm so thankful that Gus is able to have a break from his Crohn's. I don't dare call it a remission yet.

I hope all of our kids are able to fully enjoy their Thanksgiving break!!
Cheryl VT

Seriously happy for you and Gus--we have been blessed with remission (with remi and metho), growth, and a real college life....makes me so happy to read the success stories...we don't know how long it will last, ever!!! but will take what we can get. I still find myself worrying about the deep cough that never goes away, the head sores, the eye inflammation, the joint pain--but I have to worry about something, huh? anyway, enjoy your thanksgiving family time and this remission-- like period in Gus's life!

How wonderful for Gus and your family :) So nice to finally have a remission, and fingers are crossed for a nice LONG one! Gus must be just so relieved and ready to worry about other teenage stuff.... I'm so glad.

Will is doing ok now that he is back on remicade. His doc tried humira instead beginning in June, and by 1 month ago, he was living through waves of nausea all day.. It didn't work. i became a very squeaky wheel and got him on remi again, and now all is good in his life. College apps are out and fingers are crossed.

So glad about Gus.....hope you all have a wonderful christmas holiday!

Thanks deerey.

Kate, WOW! Most docs don't want to go back to a medication that they already determined was not working. That's amazing. I'm glad it is working for Will. College...already??? I know how you feel though. I'm meeting with the high school tomorrow to discuss needs and options for Gus' freshman year...next year. Eeek!

Best wishes to everyone for a Merry Christmas too!

Chery