Well I decided to start a blog to keep everyone up to date with everything going on in our family,since its always crazy or chaotic. So as many of you already know James and I have 5 children and 2 of them have an MPS disorder they have MPSII or Hunters Syndrome. Their bodies lack an enzyme that break down long chain sugars which over time get stored in pretty much all the cells of the body causing multiple organ problems and eventually death. We lost our oldest son Nathan on April 4th of this year so its been a tough year just dealing with that. Easton our youngest has the same disorder he is going to be involved with a clinical trial that will actually place the enzyme that he lacks into his spinal fluid and hopefully it will cross the blood brain barrier and prevent any further brain damage from occurring. But let me back track a little the FDA approved and enzyme replacement for hunters about 3 years ago which Nathan and Easton would get once a week this is given through I.V. and it can only get into certain parts of the body and the brain just happens to be one of those parts that it can't get into. So that brings us to the clinical trial Easton will go in for a surgery on January 15th to place a device that will be similar to a port that will go directly into his spinal fluid. He will be at UNC for about 10 days total this time then after that I will go back east with him once a month for about a week.
Now on to Weston he is our 8 year old and is seemingly healthy or doesn't have Hunters but over the last few weeks we found out that he has some pretty bad Kidney problems he has kidney stones and mega ureters and will need a pretty big surgery were they will disconnect the tubes that go from your kidneys to your bladder and narrow them cause they're huge so they taper these down and reattach them to the bladder then they will try to remove his kidney stones and check everything out to try and find out why this is happening he will be in surgery for a minimum of 4 hours and in the hospital for about 3 days if all goes well then will come home with what sounds like very messy drain tubes that will be in place for about 2 weeks then they will remove those and from there I have know clue. Sorry this is such a long post but you know.