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Tuesday, August 16, 2011

5 more days...

that is how many days till school starts!! the girls are ready to go back and I am ready to send them back!  We need to get back on a daily routine, before, during and after school!  

This week we are trying to find last minute school supplies (which everyone is out of), putting away school clothes, organizing dressers and trying to find Sami new school shoes.  We went out tonight and the ones she liked were either too expensive, or not suitable for school.  So we will try again this weekend.

She went back to the back surgeon Monday and he is happy with her progress.  She goes back in 2 months and they will take x-rays to check her spine and that will determine how often she goes after that.

Tomorrow we have a meeting at school to add Sami's new restrictions to her 504 plan and then Thursday is 'meet the teacher night'.

Today was the first good day Joey has had in over a week.  His skin in a mess.  Yesterday he was missing a lot of skin on his legs.   His upper thighs are HORRIBLE.   Today some places looked "a little" better.  Itching is still a battle every day.   He is laughing a lot more and is starting to grab more at toys.  He LOVES this sisters, especially when they play with him :) 

I was doing really good, but then went downhill REALLY fast and am now back on my all medication, including the Prednisone.  I hate taking that stuff but I got to the point where I could barely take care of Joey, let alone the other three, the house and still work.   So I will slowly get back down to the lowest dose possible yet still get relief and have the ability to function like a normal person. 

Well that is about it for now.  The next update will probably be the first day of school post, so until then, have a great week!

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