Monday, December 17, 2012
what's next
We saw Dr. Palermo today. He's ordering an MRI and some other tests to determine the status of Josh's inflammation. At this point no one is really sure if his meds are working or not. We will have labs back in about a week on 2 tests they started today. I'm scheduling his MRI appointment for sometime in the next 2 weeks. We will know more then & keep everyone posted. Keep your fingers crossed...
hug your babies
It's been awhile since I last posted on this blog. The good news is that there hasn't been much to report. Josh has had 3 treatments of Remicaid without any side effects, without any problems. Thinking back to October & rereading my posts from then, I forgot how stressful it was to just make the decision to even administer this medication. Now, we are at a place where we're not only comfortable with it, but also hoping it's going to be a long term solution for his disease. Funny how time can really change and reposition your thoughts, feelings and stresses.
Today, we are headed to Josh's doc for a 4 week follow-up. They are monitoring his symptoms, lifestyle and growth patterns. Because he's getting to the age of puberty (help us!), it's extremely important for us to make sure his inflammation and/or medications aren't stunting his growth. So far, he's maintaining a fighting weight of a whole 87 pounds and no real improvements in height. We're hoping this visit today will show some gains in both of these areas.
Many people are asking "how do YOU think he's doing". The short answer to this question is...we really don't know. The good news is that he's not in any pain, he's not bleeding/cramping/missing school/having hospital visits/etc. and he's still off steroids. The bad news is that since being off steroids, he's showing signs of being back where he was in September. Not as bad, but could be heading in that direction. Based on this, it's likely he will have to have an MRI to evaluate his inflammation before the end of the year. This will probably be confirmed today.
So, that's where we are at right now. It's been an emotional 6 months for our family. We continue to be hopeful and optimistic that we are on the right path with all of Josh's medical and emotional needs. Our friends and family have been, and continue to be, the major reason for this. Also, when you turn on the TV right now & see all the horror and agony of what just happened in Connecticut, it really keeps things in perspective for us. We are SO, SO blessed with the gift of our 3 boys. Josh's journey with ulcerative colitis is never going to make or break him or us. It's just one piece of his beautiful little life.
xo
Today, we are headed to Josh's doc for a 4 week follow-up. They are monitoring his symptoms, lifestyle and growth patterns. Because he's getting to the age of puberty (help us!), it's extremely important for us to make sure his inflammation and/or medications aren't stunting his growth. So far, he's maintaining a fighting weight of a whole 87 pounds and no real improvements in height. We're hoping this visit today will show some gains in both of these areas.
Many people are asking "how do YOU think he's doing". The short answer to this question is...we really don't know. The good news is that he's not in any pain, he's not bleeding/cramping/missing school/having hospital visits/etc. and he's still off steroids. The bad news is that since being off steroids, he's showing signs of being back where he was in September. Not as bad, but could be heading in that direction. Based on this, it's likely he will have to have an MRI to evaluate his inflammation before the end of the year. This will probably be confirmed today.
So, that's where we are at right now. It's been an emotional 6 months for our family. We continue to be hopeful and optimistic that we are on the right path with all of Josh's medical and emotional needs. Our friends and family have been, and continue to be, the major reason for this. Also, when you turn on the TV right now & see all the horror and agony of what just happened in Connecticut, it really keeps things in perspective for us. We are SO, SO blessed with the gift of our 3 boys. Josh's journey with ulcerative colitis is never going to make or break him or us. It's just one piece of his beautiful little life.
xo
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