Natural History Study

We had a wonderful time in Minnesota.  We spent Tuesday meeting with the doctor in charge of the study. He has become a favorite doctor of Matt and I.  The rest of the day was spent doing developmental testing. If you have never gone through this, it is totally exhausting for both the adults and children.  It is hours of testing - putting puzzles together, coins in piggy banks, drawing straight lines, stacking blocks, etc.  Then you are handed 7 different questionnaires to fill out, to help assess their developmental ages.  I know that this is very useful information, however checking the "Not Able To Do" box over and over again is quite discouraging.

We didn't come away from the day surprised.  Waverly is losing skills - she has regressed since our visit 6 months ago.  Oliver has plateaued - he hasn't gained any new skills and actually lost some skills in the fine motor area.  While I knew both of these facts, it was still anything but easy to hear.  The doctors seemed particularly concerned that Oliver did not gain in any areas.

Wednesday was spent in the hospital.  Both of the kids went under general anesthesia.  They each had an ECHO, MRI, ABR, blood work and lumbar puncture.  It is always a long day...getting Oliver back in the OR, prepping Wavey, Wavey to the OR, waiting, meeting Oliver in recovery and then Waverly.  Both kids were exhausted.  We went back to the hotel, got take away and all went to bed early.

We flew home last night, after a few hours at the Mall of America.  They both did great on the plane and slept all night long without a peep.


Joanne Huff said…

Some days I am hit hard by the fact that both of your children have Sanfilippo. Reading this particular entry triggered that for me. It must have been a tough few days for you all. I'm really happy that being a part of the study is overall a great experience, just so glad that there is *a good part* in that mix. Just thinking of you all and glad the trip back went smoothly. XOXO Joanne
Anonymous said…
Welcome home!
Jen L

Popular Posts