I can't believe it's been 3 years since Josh had his surgery. By the statements of most of his doctors at the time he should have been back to work and funtioning fairly normal by this time. Ha! Wouldn't that be nice... I know he wishes he could be back to work.
As I was typing Josh just lost the last 20 mintutes. I am pretty sure he just had a seizure different from normal. He had a hard time using the right words for things. He called his pillow his pills, and his blanket, his bucket. He also gasped for air a few times and told me his throat was not working right. He remembers nothing of it, and just asked me if he fell asleep. So back to normal is far from our reality.
Just a few weeks ago Josh was admitted to the hospital for rapid onset blindness. His neurologist diagnosed him with having Thunder Clap headache/Cluster headaches. Josh was taking migraine medication that only made things worse. After about a week in the hospital his vision came back to about 80-90 percent. He continues to have seizures here at home and lately they have been bad enough for him to lose his vision again, but it does slowly come back.
His neurologist is great with him but at the same time I think he feels a bit lost on where to go at this point. Things are not improving, they only seem to be getting worse. He is sending him to a Neuro Opthomologist to see what that doctor says.
Josh has also been having trouble with his liver. He knows it is enlarged and there are issues there. Who knows where we are going there? If it's not one thing it's another. We try very hard to just take one thing at a time, the problem is we want to take a break so many times that both Josh and I ignore things at times. It's all so draining.
Josh still walks with a cane and many times it's not enough but he's a "tough guy", and tries to just get by. He is struggling with trying to feel useful for the family and listening to his body. When he ignores how he feels, it usually does not work out well for anyone. He has been trying to start a buisness and has done some sales, but over the last month it's been very difficuly for him to do much of anything. His had to miss his last gun and knife show because he was in the hospital.
We continue to persue the military compensatioin for him. We do know a lot of this can be linked back to poisons he was exposed to in utero and after birth while living on Marine Corps base. The military does NOT make it easy though. We are mainly looking for the medical coverage for him because his medication alone is crazy expensive, however I am very lucky that my insurance is as good as it is!
I hear a lot from the people around me and those I work with how they are amazed at how I do it all. I don't. I don't have things completely together, and my house is an unbelievable mess, but my kids are happy and we are doing what we need to do. This is our life whether we like it or not. I can't spend time dwelling on the things I can't change, at the same time that doens't mean I don't get down and frustrated and tired with it all. I do struggle, but as long as my kids are taken care of and happy and things are as normal as I can make it for them we will be fine.
Emily is in Young 4's this year. She goes to school all day Monday through Thursday. She loves it and frequently tells us it's not long enough!! Her teacher is a great teacher too!!
Billy is a very stong willed little boy! He will be 3 in February and can be such and angel and a super big helper and then 5 minutes later he can be screaming, yelling, throwing a fit, and showing those terrifically terrible 3's coming soon! We have been working hard on potty training and he can do it, but frequently just doens't want to.
Kianan is getting so big, and is such a ham!! He is a big smiley kid who loves to try and make other laugh. He's been a big cuddler lately too, and I will never complain about that!!
I am working on my PhD in Early Childhood Education. It is something I always wanted to do, and jumped in with two feet starting in June. I am about to finish my 4th class. 16 more to go and I will have my degree. I am doing it completly online and it's wonderful!! Ideally I would like to get into research for early childhood and help change some of the policies and increase the availability and appropriatness of preschool programs!!
As for us as a whole we are surviving. The kids are VERY happy and to me that is the most important thing. Sorry to those who have not seen or talked to me in awhile/long time I don't get out and have much free time often. I appreciate the kind thoughts and all the prayers!! Love to everyone!!
As I was typing Josh just lost the last 20 mintutes. I am pretty sure he just had a seizure different from normal. He had a hard time using the right words for things. He called his pillow his pills, and his blanket, his bucket. He also gasped for air a few times and told me his throat was not working right. He remembers nothing of it, and just asked me if he fell asleep. So back to normal is far from our reality.
Just a few weeks ago Josh was admitted to the hospital for rapid onset blindness. His neurologist diagnosed him with having Thunder Clap headache/Cluster headaches. Josh was taking migraine medication that only made things worse. After about a week in the hospital his vision came back to about 80-90 percent. He continues to have seizures here at home and lately they have been bad enough for him to lose his vision again, but it does slowly come back.
His neurologist is great with him but at the same time I think he feels a bit lost on where to go at this point. Things are not improving, they only seem to be getting worse. He is sending him to a Neuro Opthomologist to see what that doctor says.
Josh has also been having trouble with his liver. He knows it is enlarged and there are issues there. Who knows where we are going there? If it's not one thing it's another. We try very hard to just take one thing at a time, the problem is we want to take a break so many times that both Josh and I ignore things at times. It's all so draining.
Josh still walks with a cane and many times it's not enough but he's a "tough guy", and tries to just get by. He is struggling with trying to feel useful for the family and listening to his body. When he ignores how he feels, it usually does not work out well for anyone. He has been trying to start a buisness and has done some sales, but over the last month it's been very difficuly for him to do much of anything. His had to miss his last gun and knife show because he was in the hospital.
We continue to persue the military compensatioin for him. We do know a lot of this can be linked back to poisons he was exposed to in utero and after birth while living on Marine Corps base. The military does NOT make it easy though. We are mainly looking for the medical coverage for him because his medication alone is crazy expensive, however I am very lucky that my insurance is as good as it is!
I hear a lot from the people around me and those I work with how they are amazed at how I do it all. I don't. I don't have things completely together, and my house is an unbelievable mess, but my kids are happy and we are doing what we need to do. This is our life whether we like it or not. I can't spend time dwelling on the things I can't change, at the same time that doens't mean I don't get down and frustrated and tired with it all. I do struggle, but as long as my kids are taken care of and happy and things are as normal as I can make it for them we will be fine.
Emily is in Young 4's this year. She goes to school all day Monday through Thursday. She loves it and frequently tells us it's not long enough!! Her teacher is a great teacher too!!
Billy is a very stong willed little boy! He will be 3 in February and can be such and angel and a super big helper and then 5 minutes later he can be screaming, yelling, throwing a fit, and showing those terrifically terrible 3's coming soon! We have been working hard on potty training and he can do it, but frequently just doens't want to.
Kianan is getting so big, and is such a ham!! He is a big smiley kid who loves to try and make other laugh. He's been a big cuddler lately too, and I will never complain about that!!
I am working on my PhD in Early Childhood Education. It is something I always wanted to do, and jumped in with two feet starting in June. I am about to finish my 4th class. 16 more to go and I will have my degree. I am doing it completly online and it's wonderful!! Ideally I would like to get into research for early childhood and help change some of the policies and increase the availability and appropriatness of preschool programs!!
As for us as a whole we are surviving. The kids are VERY happy and to me that is the most important thing. Sorry to those who have not seen or talked to me in awhile/long time I don't get out and have much free time often. I appreciate the kind thoughts and all the prayers!! Love to everyone!!
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