Update from our Chicago Visit

Our little football team converged on Chicago in early December to participate in the Natural History Study clinical trial, see Genetics,see a hearing expert, get carpal tunnel testing, and followup with Neurosurgery. A full plate indeed. We literally all huddled together in Chicago, and didn't see any of our friends we miss so much. We drove by our old neighborhoods and Jack's old school.  Next time, we definitely want to see all the wonderful friends there, we love and cherish. This trip was different, it was hard, stressful, and our hearts need healing. Nicholas continues to fare better than Alex at this point. We were told that our boys likely have severe MPS II.  Generally kids who have severe MPS II, lose their speech by age 12 and pass away by age 15.  The message that Dan and I heard though is if you don't disrupt the course of the disease, if you don't do anything to save your children, that's their fate.  I walked away sad but VERY inspired to be better parents, better people, better workers, and give everything we have in our souls.  I can't live with myself if I don't do everything possible to help our kids.  Some of these hard messages just give us clarity to put a plan together and get moving on things we can impact and set aside those we can't.  I am also not ready to accept any dire outcome until I make sure that I help Alex with his ability to hear.

The outcome from the specialists is as follows: Nicholas will be followed for the syrinx issue with his spine but otherwise it's not going to impact any involvement in the intrathecal clinical trial.  In that trial, medicine is delivered directly to their spinal fluid and effects the brain and other organs IV infusion cannot effect at this point.  From other parents and children involved in the intrathecal trial, the effects are very promising and they're seeing reversal of the effects of Hunter Syndrome in some children . Again this is according to what we read from other parent posts and blogs.  We're not enrolled in that trial yet.  We're hoping to meet the trial criteria sometime in 2014.

It was one of the most difficult decisions to have Alex undergo spine surgery.  It paid off big time though.  In his MRI images, his spine looks beautiful!!  Best surgeon ever in Chicago, can't thank him enough. It doesn't mean he won't ever have other spine issues but the surgery ended up being the right thing to do.

Alex's special education teacher used a technique with him called a token board.  This approach paid off big time during this visit because he was able to sit and comply for most of his IQ testing, which is major progress!!

More updates to come in the New Year!

Here's a picture of the boys playing at Ann & Robert H. Lurie Children's Hospital in Chicago.

At the Chicago Children's Museum before our Genetics Appointment.