must lovedogs and momtoteen

worried mom, thanks for posting this. They are both on my mind today too :)

Mustlovedogs,

How is your daughter doing?  I was thinking you guys and hoping that she is going well.

Brandon is doing better.   Compared to last weekend he is a different person.  (I always feel that if I speak out loud about the positives, that I am going to jinx us).    He tolerated the Remicade well.  Had no side affects (with the first infusion so far).   He had an active weekend,  has only had one BM per day for the last 4 days and today was the first day it was other than diarrhea (after an entire month)!   You cannot believe how excited he was to see something (semi) solid in the bowl! LOL!!   Hard to believe the little things in life that make us smile these days.    He is actually going to try and attend the teen camp tomorrow that he was supposed to start last week.  

I am still trying to figure out how to send a direct message on this site to a specific person, other than posting under the forum.   If anyone can tell me it would be greatly appreciated! 

And I love the GIMonitor app for the Iphone!  I really beats carrying a notebook around!

 

momof teen,

It is so great to hear Brandon is doing better. When does he go in for his next dose of remicade? I know what you mean about not jinxsing yourself. It never failed that when someone asked I would tell them good and then it seemed like the next couple of days she would start feeling bad. Hope he has a good time at camp. I hope remicade is the answer for him. Good luck

MomofTeen, I am so HAPPY to read that your son is much improved!! I tend to be the same way about being afraid to say things are going well.

I hope the other child is doing well, too!

I usually try to disappear, too when my kids are doing well. You just need that break from it all after watching your child endure a flare. I often feel guilty for only coming around when I need help, but hope people understand the need to use healthy times to regain emotional strength without being reminded of how horrible it can be.

Keep us posted on how your son is doing, if you get the chance.

Hi everyone!

How nice to see so many of you have been asking about my daughter :) BTW her name is Paige! She had her first infusion on Thursday. I was SO afraid that she was going to be one of those who immediately has an allergic reaction and then not be able to continue with the treatment. I have become so jaded in the past 2 1/5 years - NOTHING seems to ever go our way so I have learned to not get my hopes up anymore. Thankfully she tolerated it just fine -- we ended up on the PICU ward of the hospital...they weren't quite sure where to put her since it was her first infusion, but we had a private room and my husband was able to be there too. It took a few hours and then we were on our way home. Paige says she doesn't feel any different, but I have seen a little bit more energy in her :) She is still weaning off Prednisone, down to 5 mg!! It is scary that we have so much riding on Remicade, as it is our last hope before surgery...there is NO WAY I will ever put her on Prednisone again. She has had awful, terrible, horrific emotional meltdowns. I cannot put her through this again. Not to mention she looks like a totally different person. Isn't it enough that this disease prevents her from living the life of a normal 13 yr old girl....but to have to alter her appearance in the way that it has is just too much to handle.

Next infusion is in 2 weeks and then 4 weeks after that and then hopefully we will be on the every 8 weeks schedule. It's too bad she can't have the infusions at the same time as my husband has his!

Thanks again for your concern. It is so nice to know people care :)

Mustlovedogs...just sent you an email but it was returned undeliverable.   I sent from my work email so I will try resending from my home email.