Saturday, April 20, 2013

A Penny for Your Thoughts...



A penny for your thoughts?  Actually... on second thoughts ... I'll keep my penny and you can keep your thoughts!!

We have already hit a lot of resistance with the stem cell issue.  I suppose I knew it was coming, I just wasn't sure what to be prepared for.  We have been talking to Dryden's doctors as he sees them, just to get an idea of what they know/have heard in the medical community about the stem cell treatments.  Many of them aren't familiar and are a little skeptical.  Some have been very excited, heard wonderful things, and are all for it.  

Let me assure you, if there were any thought in our minds that there was something that could go horribly wrong, or that this could injure our child in any way ... we wouldn't even consider it.  I don't think any parent would put their child through some crazy procedure on the off chance that it could work.  We realize that the fact that it is not available in the United States sends red flags, however, before you get hung up solely on the fact that it is going to be in Mexico, at least attempt to find out the reasons that it is not done in the United States.  Political and ethical debates are the top reasons.  Stem Cells are a new (within the last 10 years) method of treatment.  There aren't as many studies out there for them, and with the political and ethical holdups, funding is hard to secure to do additional studies.   

We welcome and appreciate people's opinions, advice, and concerns.  What we ask, however is that you do your research FIRST.  We have done ours, and a LOT of it.  If you are going to come at us without first educating yourself as to the situation at hand... then you can very simply keep your thoughts to yourself.  If you approach us after your research and still have concerns we will gladly address them.  We are looking at this from ALL angles, not as a miracle cure for Dryden.  

We know that this is not a CURE for Spina Bifida.  We know that we cannot expect Dryden to get up and run.  And as far as our "expectations" with this procedure, it is really difficult to pinpoint them as there are a lot of areas we would like to see improvement in!!!  We would love to see Dryden's bladder correct itself so that he does not have to be continually cathed, and doesn't "leak".  We would love to see sensation in Dryden's lower legs (right now, from what we can tell, he has sensation down to about his knees).  We would love for Dryden's muscles in his lower legs to fire up and start functioning.  We would love to see him wiggle his chubby little toes.  ALL of these things have already been done in other Spina Bifida children treated with Stem Cells!!!  

The procedure is administered in an operating room via IV and takes about 30-45 minutes.  After which they watch the patient for about 6 hours, just to make sure there is no sign of infection.  Some patients have seen improvement right out of the operating room.  That being said, there IS a chance that Dryden's body will reject the cells.  In that case, his body would just kill them off and no harm would be done.  I have spoken with many parents who have had treatments for their children, as well as adults that have had treatments done.  Some have had outstanding results, some have had no significant results.  No one I have talked to has had any BAD experiences with the stem cell treatments.  

Without people going to other countries to do these treatments, we would have no one to pave the way for future treatments here in the United States.  If it was your child, would you not do anything you could to better their life?  While we know there is no "cure" at this time, if there is a chance this will help him walk, need less treatment later in life, and improve areas such as his bowel/bladder function, we are going to do everything in our power to make it happen.  We know you would too if you were in our position.  

I apologize if this offends anyone, it is NOT intended to do so.  We just do not want to be bombarded with negativity when we are trying to do a positive thing for our baby.  We love all of you, and if you have any questions, we are glad to answer them to the best of our knowledge, and if we can't... we can put you in touch with people who can.  Please follow us on this journey and stand behind us, don't try to block our path.  

There's my thoughts... and you got them for free... no penny needed.  

No comments:

Post a Comment