Ellie has a rare genetic syndrome called Wolf-Hirschhorn syndrome. This is the result of a genetic error on chromosome 4. It is estimated to occur in 1 in 50,000 births. Ellie also has right eye anophthalmia, which means she was born without her right eye. Ellies life has its ups and downs, but she continually amazes us and makes us smile. This is her story
Being happy doesnt mean that everything is perfect.
It means that you have decided to look beyond the imperfections...
I never commented on this post - but I had wanted to. This morning as I was re-reading it I thought I would finally give my unrequested two cents so here it is... I think it will be great for you to reassess Ellie's therapies. I know Anna already offerred that advice and I guess I am seconding it although I know it is already a goal of yours - just wanted to encourage you.
For us, we do therapy weekly for PT (altough our therapist has to cancel more often than most - once a month or so) and we do speech and OT every other week. Then I try, when it makes sense, to practice what we have learned with Norrah but I do not make it a MUST every day. With physical therapy especially - I have found that showing Norrah what she can do and then backing off has helped her to eventually desire to do it on her own - like standing.
I think most of our kids are stubborn and running on their own schedule. So - not killing ourselves or them with overloading on therapies and practice is often times the right move! I am excited to see Ellie continue to achieve and blossom this year.
Just wanted to encourage you that this break may be just what she needs to move forward.
I never commented on this post - but I had wanted to. This morning as I was re-reading it I thought I would finally give my unrequested two cents so here it is... I think it will be great for you to reassess Ellie's therapies. I know Anna already offerred that advice and I guess I am seconding it although I know it is already a goal of yours - just wanted to encourage you.
ReplyDeleteFor us, we do therapy weekly for PT (altough our therapist has to cancel more often than most - once a month or so) and we do speech and OT every other week. Then I try, when it makes sense, to practice what we have learned with Norrah but I do not make it a MUST every day. With physical therapy especially - I have found that showing Norrah what she can do and then backing off has helped her to eventually desire to do it on her own - like standing.
I think most of our kids are stubborn and running on their own schedule. So - not killing ourselves or them with overloading on therapies and practice is often times the right move! I am excited to see Ellie continue to achieve and blossom this year.
Just wanted to encourage you that this break may be just what she needs to move forward.