Long over due update

WOW!!!! Has it been a long time since our last update! So, much has been happening and things have been so busy but I figure better late then never!

Jonathon: So, much is going on with him.  Right before he went to camp this summer he had some neur-psyc testing done and needless to say did not come out how we expected.  He has been diagnosed with Aspergers which was a total shock though it explains so much of the behaviors and actions.  He also is mildly MR which I had a good feeling because his cognitive function has not gone up since his last testing 3 years ago.  So, we have been working with so many people and honestly it becomes very over whelming at times.  Then on top of all that we have the EB and that has been up and down.  Pain seems to be the biggest thing for him at this time (on top of the usual stuff).  Today when I was looking him over all his areas have blisters.  I am pretty sure its because of the stress at school with all they bullying and now he is going to a whole new class because of everything that is going on.  This class is a life skills class that teaches the things you need to be independent.  I am trying to get him a appointment at Cincinnati.  I think its time for him to have a scope but, I want it done by someone with experience.  There are of course other things I want them to see him for so, we shall see what happens with that.  I will be starting a fund raiser "Pennies for Jonathon" to help us get there and back.  Also I think its time for him to have a wheel chair for the days he can not wear his sneakers.  Now he is wearing them but he will limp and need to sit frequently so, I think this may help him and not put so, much pain that he doesn't need. Other than that he is doing well.

Ariana: She has been OK.  She also is Autistic with NOS and SPD.  Her "fits" have been happening a lot more lately and we are back to the same talk that she was saying before.  Things were going so well and under control but I think with her hormones raging at the nice age of 12 that is not helping.  Some of the things I am learning for Jonathon I have been putting in place for her.  Other than all this  she is good.

Ellie: Finally just had her allergy testing done. Guess what??? She has no allergies.  HAHA for some reason I really don't believe that.  During the test she was screaming and moving so, much.  I may have to have it redone. One thing that is concerning is she is gaining weight and more than what it should be so, she will be having her thyroid checked to see if anything is going on. We have been controlling her intake of calories and stuff .  She is very active but still gaining the weight so, hopefully we can get some answers!!  She started preschool this year and loves it.

Me: Just had surgery on Friday for my carpal tunnel and ulnar nerve.  My fibromyalgia is in a bad flare because of all that has been going on!!  My arthritis is also not helping stuff but, what can you do!  I started school in September for medical coding. I am doing it online since I can not commit to a set time with the kids. I probably get more calls from them because of something going on, than I talk to family!! Trying to get things in place for thanksgiving and stressing out for Christmas.  Since I have been laid off I have fallen behind on everything and spend every bit of my unemployment trying to catch up so, have no idea what Christmas is going to be like this year.  The kids go through so, much and take things so well for all that they have to go through it makes me sad to know the one thing they look forward to besides a birthday may be crap this year!! Ugh can not think about it just makes me cry.  Thank you for reading and following us. Jonathon has a facebook page the name is www.facebook.com/jonathonaebwarrior so, please go follow him and get his updates.