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Total Entries: 14
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  • Written May 24, 2011 1:27am

    Cant believe it has been over a year since I have updated connors website.It has been a crazy year. The summer of 2010 for connor was great,he felt good and was having a great time with his friends, he started school in september and was doing excellent until the end of october. He woke up in the morning and complained of neck pain, i thought maybe he slept funny and he would be ok, i sent him back to bed and said just rest you will probably feel better later. Well i was wrong he woke up screaming he couldnt move, in extreme pain and very scared. We called the ambulance and rushed him to hospital. He was diagnosed with torticollis, a neurological disorder. It comes an goes, he suffers now from stiffness in his neck and pain down his arm, The only thing that relieves the pain is heat and motrinthat takes the edge off a little.He has been home since october being home schooled by our district. It stinks because then hes not seeing his friends and just not being a kid. It is just another reminder of what his life is like. i feel like when ever he starts to feel a little bit better he gets hit with something, Well we go for our mri and they see a cyst in his mouth, so we are sent to dental because they think its probably just an abscess. Well nothing ever is normal or easy for connor , he has to have it taken out and biopsied because it is not an abscess it is a cyst that is not from any infection in the mouth. The doctor says it was huge and now they will have to watch what goes on in his mouth, because it has messed with the bone and roots. But we are so thankful that is was benign. WE have been blessed with tumor free brain mris and that is such a beautiful thing, he still has the cysts in his spine but they have not grown, so that is good. We go back to chop the beginning of june for all our mris and tests so we are just praying that everything will be the same. I cant sleep until the mris are over and done and i have the results. mri  anxiety sucks.  We are working on his schdule for highschool next year. I am so scared for this, I dont know how it will  go, he still suffers from the fatigue, torticollis and has blackouts. He also has had s0me visual changes, which is new for him and stinks because he has alway been a visual learner. I just hope he will speak up and use the resources he is allowed. Thanks for all your prayers for connor and i will try to write more often.






  • Written Mar 23, 2010 9:36am

    Hi everybody,
    Just got back from chop last night, every thing went pretty good. Connor had to have alot of blood work and a special test to see whats going on with his cortisol levels. The thing that stinks is it will take three weeks for the results Yikes! What a difference in weather since last time, it was beautiful out! Everything went nice and smooth this time no train cancellations, last trip to chop was definately an experience. Connors lacrosse team the seawolves have started their season and connor got to go to one game so far and he had a ball, He loves the team! Thank you guys ! You always boost up his self confidence and he just glows when he comes home. The friends of jacolyn program is great!Hoping we can get to the next game and cheer the team on! Also thank you send love today connor loves getting your letters. Thanks everyone for your prayers for connor. Have a great day!!!!!!!!!
  • Written Feb 10, 2010 5:46pm

    Hello again, connor finished up his mris and we will get the results tommorow! What a day,when we went the hospital the snow was a rainy snow not too bad, oh boy when we were done we were stuck at the hospital it got so bad out there were no taxis or shuttle services running to the ronald mcdonald house. So we decided to walk, yeah crazy!!!!!!  It was so windy and the snow was hitting our heads so hard, thank goodness we made it back to the house. Never a dull moment in Connors life! We have are dr apt. tommorow early morning and then we are hoping to take the train home but right now it looks like we might be stranded here, having a hard time getting through to amtrack to see whats going on, hopefully i will know before we go to sleep. Well I will let you know how we make out , Hopefully we will be headed home. Talk to you tommorow, keep the faith that connors mris look good and send good thoughts and prayers our way.

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