Bitter Sweet

We just returned home from a very emotional trip to UNC to see a developmental pediatrician who is extremely knowledgeable on MPS III.  Matt and I knew it was going to be an emotional trip to NC.  We drove by the hotel we stayed at when we were at Duke for the transplant consultation and so many memories came back.  It is difficult to even express the stressful week we had and the agonizing decision we were forced to make.  For those of you following the blog, I am sure you remember this time.

Today we spent 5 hours meeting with our doctor and her team.  They conducted a full developmental evaluation and determined a developmental age in various categories.  We knew that Waverly has lost skills since our last visit, so we were prepared for lower numbers.  Still, knowing that she is between 6 - 14 months across the board is painful.  It is so helpful to provide them to her therapists, teachers, babysitters, etc.  It allows people to adjust their expectations.  Oliver is continuing to learn and his developmental age is increasing.  He is still behind his peers, coming in somewhere around 18-20 months.  Again, this is so helpful for us.

The doctor had some wonderful suggestions for us in terms of things to watch for and tests that need to be done.  She is also going to help us create ideas and goals for IEPs and school placements that need to be done this spring.  I am SO thankful for her input in this area.

She was able to give us an idea of what the next year will look like for us.  (This is always the most difficult part of the appointment.)  She believes Waverly will likely have considerable difficulty with her mobility by the end of the year and will probably test around the 6-9 month level at our next appointment.  She warned us that we are going to see some noticeable changes in her ability to walk.  Oliver is going to continue to learn new skills, but in 12 months he may only move up 4-6 months developmentally.

We were talking with her about how we feel this is Oliver's last year to really learn new skills and progress.  We want to have as much intervention as possible for him.  We figure the more he learns, the longer it will take this terrible disease to take it away from him.

Tonight is a bit solemn in our apartment.  The kids are asleep.  Matt and I are taking in the news.  The sadness has set in.  Tears are flowing.  Desperate for a cure.