I know some people are following everything going on with Josh and I know some are wondering if we have anything new to add. He did see a surgeon today that is going to be running more tests, and it seems they are going to be getting these tests done much faster than originally thought. Seems we have been able to cut out one doctor because the surgeon can do the same tests without the "middle man".
He will be going for a CT scan tomorrow with contrast and then next week a colonoscopy, endoscopy and possible biopsies. He is also supposed to get a PET scan done as soon as his finger heals. He cut it pretty bad last night on a knife.
Josh is still having trouble with his vision at times and thankfully my dad is going to be able to help make sure he is able to get to his apts. After having to cancel an apt because of his vision and no last minute option to get him there, we aren't taking anymore chances. We need to figure out what is going
on.
I very well could be missing something because I am not the one there doing it all and I have too many things going on to keep every detail of everything straight.
Only 19 more days of school for me and 7 more for Emily. I am looking forward to Memorial Day weekend so I can hopfully get a lot of my class done and get a little further ahead on things. I am doing a lot for a graduation for my students also so that has been time consuming. Because of construction in our schools this summer I also have to have my classroom packed up and moved out by June 15th. I am trying very hard to continue to lose weight, and will hopefully be able to get back into a good workout routine in the next few weeks as things hopefully calm, but usually when one things is settled another comes up!! I have to be able to tell myself though that I have a FULL life and as much as sometimes I wish it was more boring, I am MAKING time for things that are positive to be able to take the negative! Makes me super busy, but in the end helps balance it all!!
Thank you all for the continued thoughts and prayers. I will try to keep updating as I know many would like to know, but don't always want to ask me!
Wednesday, May 16, 2012
Sunday, May 13, 2012
I supose this is a bit long over due...
We try very hard to just keep things as normal as possible for everyone, however some new things or I supose the best way to put it is a change in things.
Josh has become very active in the sportsman club near our house which is good and gives him something to do and other people to talk to. He does watch the boys 3 days a week and takes Emily to and from school. He has been asking his doctors for a long time to wean him off his pain meds because he hates how he feels on them, he would rather deal with the pain. His doctors have not been too accepting of his want to be off his meds. He is still have seizures and the guess is they are deep brain seizures because he will get pain in his groin before it completely over takes him and according to the neurologist, that's a sign of deep brain seizures...... BUT who really knows!
This fall he ended up in the hospital because of rapid onset blindess. He spent 4 or 5 days in the hospital (I think, my memory is not the greatest with all this anymore) and was diagnosed with cluster headaches. He did follow up with a neuro-opthamologist who was very concerned about his eyes and suggested his brain may be pushing on his optic nerves. He was prescribed oxygen to help with the cluster headaches and it does help at times. He continues to have trouble with his eyes; double vision, vision loss, blurred vision. His neurologist is at a loss.......
Last year we noticed some hard lumps all over his body and he was supposed to have them removed/ or biopsied, but it never happened. The conclusion was made that his lymphnodes are swelling and turning hard and he needed to follow up...... He never did. His family doctor sent him to an Infectious disease doctor who is now sending him for multiple tests and he will be getting a full GI worked since he is also passing a lot of blood at times. The lymphnodes are certainly causing trouble because last week he had severe pain in both arms, the veins in his arms buldged and both arms became rock hard. When that finally passed he didn't have use of his arms for many hours. So what's going on?? We really don't know, and it doesn't seem like anyone else knows either. The infectious disease doctor ranked her choices for posibilities: 1. a virus of some kind compromising his immune system, 2. cancer, or 3 bacterial infection of some kind.
So needless to say things have not really calmed down around here. I am still working on my PhD and will be finishing up the school year soon and will be going to Florida for a conference in June with a few other teachers. Josh and the kids will be staying home without me for 4 days! Emily is loving school and will be in kindergarten next year at my school. The boys are getting big and loud!! :-)
Thank you to all of you who have listened and continue to listen to me complain and get all this off my chest. I will update again if/when I get information on what's going on!
We try very hard to just keep things as normal as possible for everyone, however some new things or I supose the best way to put it is a change in things.
Josh has become very active in the sportsman club near our house which is good and gives him something to do and other people to talk to. He does watch the boys 3 days a week and takes Emily to and from school. He has been asking his doctors for a long time to wean him off his pain meds because he hates how he feels on them, he would rather deal with the pain. His doctors have not been too accepting of his want to be off his meds. He is still have seizures and the guess is they are deep brain seizures because he will get pain in his groin before it completely over takes him and according to the neurologist, that's a sign of deep brain seizures...... BUT who really knows!
This fall he ended up in the hospital because of rapid onset blindess. He spent 4 or 5 days in the hospital (I think, my memory is not the greatest with all this anymore) and was diagnosed with cluster headaches. He did follow up with a neuro-opthamologist who was very concerned about his eyes and suggested his brain may be pushing on his optic nerves. He was prescribed oxygen to help with the cluster headaches and it does help at times. He continues to have trouble with his eyes; double vision, vision loss, blurred vision. His neurologist is at a loss.......
Last year we noticed some hard lumps all over his body and he was supposed to have them removed/ or biopsied, but it never happened. The conclusion was made that his lymphnodes are swelling and turning hard and he needed to follow up...... He never did. His family doctor sent him to an Infectious disease doctor who is now sending him for multiple tests and he will be getting a full GI worked since he is also passing a lot of blood at times. The lymphnodes are certainly causing trouble because last week he had severe pain in both arms, the veins in his arms buldged and both arms became rock hard. When that finally passed he didn't have use of his arms for many hours. So what's going on?? We really don't know, and it doesn't seem like anyone else knows either. The infectious disease doctor ranked her choices for posibilities: 1. a virus of some kind compromising his immune system, 2. cancer, or 3 bacterial infection of some kind.
So needless to say things have not really calmed down around here. I am still working on my PhD and will be finishing up the school year soon and will be going to Florida for a conference in June with a few other teachers. Josh and the kids will be staying home without me for 4 days! Emily is loving school and will be in kindergarten next year at my school. The boys are getting big and loud!! :-)
Thank you to all of you who have listened and continue to listen to me complain and get all this off my chest. I will update again if/when I get information on what's going on!
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