Pandasmom's Blog

living with PANDAS, not the furry ones…

A good day September 14, 2009

Filed under: Good days — pandasmom @ 10:54 pm

Today has been a good day.  We started the day by attending our ballet class.  We had 2 things going against us: we were late and it was the start of a new session which meant we had a new teacher.  A clearly noticed that the teacher was different and walked very hesitantly into the room.  I, on the other hand, tried to act like nothing was different than the summer session.  I walked her into the room, introduced her, told her I would be on the side of the room and was able to leave the room like all the other parents.  This is a huge accomplishment for A.  This is what normal children do and we were able to do the same.  It is a very big deal.  During the summer session we were completely unable to attend most of the classes.  We couldn’t even get dressed to go out the door, let alone attend the class.  So, the fact that she was able to walk into a different room today and approach the situtation like a typical child is a huge milestone for her.

After class we played next door at the playground.  A played on the equipment for a short while, but quickly moved over to the sandbox.  She removed her shoes and socks and spent the remainder of our time in the sandbox.  She seems to have a need to cover herself with sand and chalk dust this summer.   It is obviously a sensory issue but I wish I could help her regulate it so she could enjoy other activities as well.  She does these sensory activities to the exclusion of all other activities.  We were at the playground for about 1 hour and there were no meltdowns and she was able to use words when she encountered problems.  That is also a pretty big deal.

 After the playground we had lunch.  A was a little wound up and was a bit noisier than I would want, but not beyond the realm of a typical child.  From there, we took our drive north so the girls could take their naps.  A fell into a deep sleep and slept for over an hour.  This is very good because she hasn’t been able to sleep as much as she needs.  Driving around is the only way to ensure she gets a nap.  This is not the type of parent I ever thought I would be, but here I am.

From there, we did some shopping and both girls continued to do very well.  All in all, this has been a remarkable day.  They are both tired out since we didn’t stop much today.  They are enjoying some quiet time with Clifford right now. 

I do attribute al of these changes to the two treatments of IVIG that A has recieved since August 1.  I’m not sure if this is something that she will continue to need monthly, but I do know that the IVIG has made a world of difference in our house.  Things are still very difficult, but we are able to survive and to have good days like we have had so far today.

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