Cruel Disease

We are still waiting on the enzyme results for Oliver.  Our neurologist is on maternity leave, so it has been more difficult to get someone to chase down the results for us.  With all of the waiting we have endured this past year, you would think that I would be more patient.  I am not.  Oli is doing well.  He is walking all over the apartment and he is into everything.  We will definitely have to baby proof.  We never had to really do that with Waverly.  Wavey is rapidly changing before our eyes and it is painful to watch.  She is having trouble using a spoon now, so she requires more help eating.  She is also having more twitches or spasms.  She has a difficult time controlling her movements and she wrings her hands constantly.  Her speech has changed so much within the past month.  She struggles to get a phrase out - she just stutters for 10-20 seconds before she can can the word out.  Her vocabulary is also getting smaller.  But, she can still sing!  She has been singing her songs - happy birthday, winnie the pooh, mickey mouse clubhouse theme, happy and you know it, ring around the rosey, head shoulders knees & toes - louder than ever.  London provided a buffer for us.  Death couldn't reach us there.  Now that we are home, everything feels much more real and much scarier.