Ok so some of you know that Josh was back in the hospital about a week ago. We brought him back home Thursday evening. He went in because the pain he was in was making him throw up, shake horribly, and he felt like he was freezing. So he wanted to go in because he felt something was very wrong.
Good new is that there is nothing major wrong with him. Bad news he has chronic pain and it needs to be treated. The treatment is what he is already going through. It's going to be a LONG road and he will probably never be pain free. The goal is to get him to a point where he can function. He currently spends most of his time.....well stoned. That's the best way I can describe it.
He will continue to see his pain managment doctor and continue with treatment. He will also continue to see his psychologist down at Henry Ford for now, and I know he is supposed to see his psychiatrist also, but they do no get along well. His psychiatrist and him both feel 'they are right' and they are both stubborn and it's not a good combo. We'll work on getting him someone he can actually work with. He may just stay with the doctor down at Henry Ford for now. If/when we move we will probably find someone in the Port Huron area.
Obviously this is not what Josh wants to hear. He wants them to figure what is wrong and fix it. Unfortunatly that is not the way it works. I feel like this is going to take time for him to come to terms with and it will be like the seizure activity. It took him awhile to come to terms with the diagnosis of pseudo seizures, but he has and he had less and less of them.
As for the rest of us, Billy is growing sooo big and he's such a happy baby!! He will be crawling before I know it, and am ready for it! Emily is just so mcuh fun to listen to and watch. The things she figures out or says are just priceless. She amazes me every day. Both of them are back at daycare, the same one they were at last year and they love it. The last two days I picked them up Emily cried and didn't want to leave! Certainly better than the opposite!!
I am back to work now too. I have BIG numbers in my Kindergarten classes. I have 24 in my AM and 20 in my PM (that was as of Friday when I left work, but it changes all the time!!). It's nice to be back to work and in a routine, but I reallly feel like I can't get anything done. We are also all working off the first cold of the fall. Billy got it and shared it with my dad and then Josh, and Emily and now me!!!
We are still looking to move and hopefully (by the grace of God) we will be in something else soon. We dealt with a break-in right before I went back to work. We were gone at the zoo and when we got back we noticed. We got all the locks changed and our doors were repainted and they tried again. Didn't get in, but never the less. We now have a security system on the house!!!
Thank you to everyone for the thoughts and prayers!! We send them right back to all of you!!
Oh yeah and Josh has been awarded his Social Security benefits!! So that's a good thing.
Saturday, September 19, 2009
Monday, August 17, 2009
It's been awhile!
Well it's been pretty crazy and yet not at the same time.
Josh is actually doing pretty well. He is still having his episodes, but they are usually traced back to pain, or some kind of over stressed situation. So since we can kind of see that we are trying to keep things to a minimum but if any of you know Josh, you can't stop him from doing things sometimes!!
I guess Josh felt he hadn't been to a hospital in awhile so the other weekend he got stung by a bee and ended up in the ER. He is doing fine and came to the cottage that night. That was the day that we missed the viewings of a few houses we wanted to see because my transmission on my van blew!! YAY!! So we bought an Explorer from the place that checked out the van and that has now turned into us suing them because the 2nd time I drove it the trans light came on in that. The place we bought it from refused to give back the money so we are suing them!! GREAT more lawyers!!
I go back to school in just a few weeks so we have been trying to figure out what our plans will be when it comes to moving and a car, and daycare, and Josh and all that. So when I say it's been crazy, it has but it's life and nothing life threatening!! My motto really is....'It could always be worse!'
Ok so lets see.....Josh is driving now and working with his pain specialist doing trigger shots and all to get him off his fentynl patch (he has been told though it will take a long time!). He will most likely be watching the kids part time at first when I go back to work. I think I have found a new daycare closer to work for the kids to go the other part time. Since we are not sure when we will be moving I am just looking to make the change now.
We will be hopefully moving in the near future but things have to be put together first. We have stopped with the lawyers for our motgage because the bank refuses any type of modification. So we will be walking away from this house, which is sad, but never the less neccesary!
Emily will be 2 in 2 weeks!! OMG!!! We will be having her b-day party on the 29th of August (day after her b-day). I know the Rheaume family Reunion is also that weekend, but Emily's b-day came first. So I guess we will be doing it all together!
Billy is doing GREAT!!! He's 17lbs 10 oz now and just as easy going as can be! I am so lucky to have the children I have and to know they are happy. They are the absolute best things in my life hands down!! I will add a few new pictures!
Josh is actually doing pretty well. He is still having his episodes, but they are usually traced back to pain, or some kind of over stressed situation. So since we can kind of see that we are trying to keep things to a minimum but if any of you know Josh, you can't stop him from doing things sometimes!!
I guess Josh felt he hadn't been to a hospital in awhile so the other weekend he got stung by a bee and ended up in the ER. He is doing fine and came to the cottage that night. That was the day that we missed the viewings of a few houses we wanted to see because my transmission on my van blew!! YAY!! So we bought an Explorer from the place that checked out the van and that has now turned into us suing them because the 2nd time I drove it the trans light came on in that. The place we bought it from refused to give back the money so we are suing them!! GREAT more lawyers!!
I go back to school in just a few weeks so we have been trying to figure out what our plans will be when it comes to moving and a car, and daycare, and Josh and all that. So when I say it's been crazy, it has but it's life and nothing life threatening!! My motto really is....'It could always be worse!'
Ok so lets see.....Josh is driving now and working with his pain specialist doing trigger shots and all to get him off his fentynl patch (he has been told though it will take a long time!). He will most likely be watching the kids part time at first when I go back to work. I think I have found a new daycare closer to work for the kids to go the other part time. Since we are not sure when we will be moving I am just looking to make the change now.
We will be hopefully moving in the near future but things have to be put together first. We have stopped with the lawyers for our motgage because the bank refuses any type of modification. So we will be walking away from this house, which is sad, but never the less neccesary!
Emily will be 2 in 2 weeks!! OMG!!! We will be having her b-day party on the 29th of August (day after her b-day). I know the Rheaume family Reunion is also that weekend, but Emily's b-day came first. So I guess we will be doing it all together!
Billy is doing GREAT!!! He's 17lbs 10 oz now and just as easy going as can be! I am so lucky to have the children I have and to know they are happy. They are the absolute best things in my life hands down!! I will add a few new pictures!
Friday, July 24, 2009
Medication is changing
Ok so we have Josh off one of the anti-seizure meds and he is doing better. The hazyness it's so bad anymore and he's not forgetting where he is, and all that is getting better. So one down!
His neurologist doesn't want to mess with too much at once because it could be too much for him to take. So he goes back to see him again the beginning of Sept. (not soon enough for Josh but that's all we got!)
In the mean time he will be seeing his pain management guy and they have started tigger point injections. This is hopefully going to be just one part of getting him off the pain patch. THe doctors have told him that he CAN NOT just go off the pain meds alone. It's impossible. So they are going to plug away at it but it is going to take time!
Josh still has episodes/seizures (whatever you wanna call it) when he really over does it. He is certainly feeling a bit better. He has been really cleaning up the garage (HUGE pile of garabage this last week! YAY!!!). He has a neighbor kid that is suposed to help him get some of the other things done around the house (new gate, moving things around in the garage..). I am hoping the neighbor kid does do all this because it makes it easier when I can focus on the kids and things inside the house!!
Josh is all about cleaning up and getting rid of stuff (I don't know where that came from! I have been fighting for that for years now!). The lawyers are still working on our mortgage and the mortgage company is not wanting to change anything. We are hoping though that we can get out of this house one way or another (I should say we will be getting out of this house!). Reading in the newspaper about someone who was carjacked just around the corner, and the fact that a hosue down the street is in pre-forclosure, and the neighbors across the street have their house up for sale (short sale, 79,000) really doesn't make me want to stay here at all!!
The kids are doing well. Billy is getting SOOO big (almost 18lbs I think, the weight Emily was when she turned 1) and Emily is just talking up a storm!! She has also been helping me clean up and put clothes away and her toys away! I can only hope that continues!
As for me, I have been having a harder time being easy going about everything, but well it was bound to happen, I'm working on it! I am super happy though that Josh is cleaning and throwing away more. De-Clutter!! YAY!!!! Now if only the rain would stop and we would get some really nice warm weather so I can spend time on the beach I would be even more happy!
Josh still wants to be able to watch the kids when I go back to school (BIG money saver!) and he is now thinking it's not going to happen, but with everything I am seeing in him, I actually thinks he might be able to. I don't know only time will tell especially when they are going to be messing with his pain meds!
So I supose that's it for now. Still nothing on his social security and we are hoping that comes through soon!! We were told anytime between now and Oct! OCT!!! It better be sooner!
Thanks for all the thoughts and prayers!!
His neurologist doesn't want to mess with too much at once because it could be too much for him to take. So he goes back to see him again the beginning of Sept. (not soon enough for Josh but that's all we got!)
In the mean time he will be seeing his pain management guy and they have started tigger point injections. This is hopefully going to be just one part of getting him off the pain patch. THe doctors have told him that he CAN NOT just go off the pain meds alone. It's impossible. So they are going to plug away at it but it is going to take time!
Josh still has episodes/seizures (whatever you wanna call it) when he really over does it. He is certainly feeling a bit better. He has been really cleaning up the garage (HUGE pile of garabage this last week! YAY!!!). He has a neighbor kid that is suposed to help him get some of the other things done around the house (new gate, moving things around in the garage..). I am hoping the neighbor kid does do all this because it makes it easier when I can focus on the kids and things inside the house!!
Josh is all about cleaning up and getting rid of stuff (I don't know where that came from! I have been fighting for that for years now!). The lawyers are still working on our mortgage and the mortgage company is not wanting to change anything. We are hoping though that we can get out of this house one way or another (I should say we will be getting out of this house!). Reading in the newspaper about someone who was carjacked just around the corner, and the fact that a hosue down the street is in pre-forclosure, and the neighbors across the street have their house up for sale (short sale, 79,000) really doesn't make me want to stay here at all!!
The kids are doing well. Billy is getting SOOO big (almost 18lbs I think, the weight Emily was when she turned 1) and Emily is just talking up a storm!! She has also been helping me clean up and put clothes away and her toys away! I can only hope that continues!
As for me, I have been having a harder time being easy going about everything, but well it was bound to happen, I'm working on it! I am super happy though that Josh is cleaning and throwing away more. De-Clutter!! YAY!!!! Now if only the rain would stop and we would get some really nice warm weather so I can spend time on the beach I would be even more happy!
Josh still wants to be able to watch the kids when I go back to school (BIG money saver!) and he is now thinking it's not going to happen, but with everything I am seeing in him, I actually thinks he might be able to. I don't know only time will tell especially when they are going to be messing with his pain meds!
So I supose that's it for now. Still nothing on his social security and we are hoping that comes through soon!! We were told anytime between now and Oct! OCT!!! It better be sooner!
Thanks for all the thoughts and prayers!!
Friday, July 10, 2009
Family doctor agrees!
Josh is over medicated. At least his family doctor agrees about that point. He is backing him off of one of the anti-seizure drugs that he is taking. So far (since it was cut in half, just 4 days ago) things seem to be getting a bit better. Josh did tell me that he felt less 'lost' yesterday, so that's good. Hopefully after he sees his neurologist next week that we can get him off of more of his drugs and maybe start fresh and see what we have.
He sees a pain specialist on Monday and hopefully we can get him started on steroid shots and that will hopefully help with the pain so he can slowly go down and off the pain patch he is on.
Josh still wants to be able to watch the kids when I go back to work. I think it would be great but we have a long way to go before that will be able to happen. Maybe if we can get him off some of these drugs that throw him off, things might get better.
I will say it again, (which means I know what will happen in the next few days) I haven't seen a seizure in quite a few days. Of course the kids and I are up at the cottage this weekend and Josh is home with the dog. His plan is to at least sand the basement stairs to get them ready for painting. This way we don't have to worry about the paint on the stairs possibly having lead in it and the kids being exposed.
Emily went and had her blood drawn again yesterday and I am praying that her lead level has gone down. If not I am not sure what else to do about it!! She has been on iron supplements for 3 months and hopefully that did the trick!!!
Stay tuned!!!
He sees a pain specialist on Monday and hopefully we can get him started on steroid shots and that will hopefully help with the pain so he can slowly go down and off the pain patch he is on.
Josh still wants to be able to watch the kids when I go back to work. I think it would be great but we have a long way to go before that will be able to happen. Maybe if we can get him off some of these drugs that throw him off, things might get better.
I will say it again, (which means I know what will happen in the next few days) I haven't seen a seizure in quite a few days. Of course the kids and I are up at the cottage this weekend and Josh is home with the dog. His plan is to at least sand the basement stairs to get them ready for painting. This way we don't have to worry about the paint on the stairs possibly having lead in it and the kids being exposed.
Emily went and had her blood drawn again yesterday and I am praying that her lead level has gone down. If not I am not sure what else to do about it!! She has been on iron supplements for 3 months and hopefully that did the trick!!!
Stay tuned!!!
Monday, July 6, 2009
4th of July holiday
First I want to let everyone know that Josh does not know I have this blog. It is not that I am trying to keep things from him but he would rather I not share everyone with family and friends. He is embarrassed about all that is going on and the lack of control he has. Most people ask him and he will talk about it, but honestly this is the best way to keep everyone updated. I just ask that the blog not be mentioned to him to save on a lot of un-needed stress! Thank you ahead of time! One other thing if you ever have any questions or anything my e-mail is ctonsor1@yahoo.com!
Well we had another LONG weekend away from home. We were at the cabin in Cadillac from Thursday through Sunday. We then headed to the cottage for a night and came home this evening.
It was a rough weekend but there were some good times too. Josh is having a tough time right now. He has been having trouble with staying awake. He is always wanting to sleep or feeling completely exhausted. We are going to see our family doctor tomorrow and maybe he will have an idea. Ok lets see what else is going on with him,.....where do I start? Besides all the sleeping (which may be drug related) he is still having seizures and with those the left side of his body, face go numb and his face sags. It doesn't last forever but if he does come to, his speech is slurred and he gets confused easily. He is having more and more of his freezing spells where he just stops and is frozen. He says sometimes he is awake and realizes that he's frozen and can't move or talk or anything, but most of the time he isn't aware. He has also had some spells where he completely forgets where he is. He gets panicked and doesn't know where he is or where is he going. So far he only gets lost when it comes to places but not people. He still knows me and Emily and Billy and anyone else who is around, but he gets very upset because he can't tell where he is.
He did have a pretty bad spell (I'm still not sure what to call these things) on Sunday at the cabin. He was trying to help me pack up the car and he froze in the driveway. I was taking our tent down and he was by himself. He tried to write help on the ground with his cane because he couldn't move. I believe his sister saw him and got him inside the cabin where he melted down. He was unable to talk and was VERY upset. His mom gave him a pad of paper and pencil and he tried to fist write. He asked for me and I came in and tried to calm him down. His face was sagging and he was very distraught! He wanted Emily was I told him not until he calmed down. He was scared as I am sure any of us would be. He then had another seizure like thing and we was able to talk a little more as time went on and he calmed down. I am very greatful to the his family for helping us out with the kids this weekend, especially yesterday when I was packing up!
So who knows what is going on as usual. We are home now and he has PT tomorrow and Weds. He sees our family doctor tomorrow also and then the Henry Ford doctor on Thursday. He sees a pain specialist next week along with his neurologist. Someone, some where has to know what is going on. Or have an idea!! At least I will be around now for the next few apts with doctors and I can push them to try and answer some of this. Things have changed which means something has changed and waiting to just see what else happens is NOT an option!!
So anyway I look forward to (weather permitting) going to the zoo with Tracy and the boys on Weds. So at least I have something else to look forward to also!
I was excused from jury duty after sitting for 4 hours and being called for case. I just told the judge anything past that day I couldn't do because of all that was going on here at home and he was quick to excuse me! Nice man!!! :-)
Ok it's late and he has PT early so I am off to bed! Thanks again to everyone for all their support and prayers and help!! We are very greatful!!
Well we had another LONG weekend away from home. We were at the cabin in Cadillac from Thursday through Sunday. We then headed to the cottage for a night and came home this evening.
It was a rough weekend but there were some good times too. Josh is having a tough time right now. He has been having trouble with staying awake. He is always wanting to sleep or feeling completely exhausted. We are going to see our family doctor tomorrow and maybe he will have an idea. Ok lets see what else is going on with him,.....where do I start? Besides all the sleeping (which may be drug related) he is still having seizures and with those the left side of his body, face go numb and his face sags. It doesn't last forever but if he does come to, his speech is slurred and he gets confused easily. He is having more and more of his freezing spells where he just stops and is frozen. He says sometimes he is awake and realizes that he's frozen and can't move or talk or anything, but most of the time he isn't aware. He has also had some spells where he completely forgets where he is. He gets panicked and doesn't know where he is or where is he going. So far he only gets lost when it comes to places but not people. He still knows me and Emily and Billy and anyone else who is around, but he gets very upset because he can't tell where he is.
He did have a pretty bad spell (I'm still not sure what to call these things) on Sunday at the cabin. He was trying to help me pack up the car and he froze in the driveway. I was taking our tent down and he was by himself. He tried to write help on the ground with his cane because he couldn't move. I believe his sister saw him and got him inside the cabin where he melted down. He was unable to talk and was VERY upset. His mom gave him a pad of paper and pencil and he tried to fist write. He asked for me and I came in and tried to calm him down. His face was sagging and he was very distraught! He wanted Emily was I told him not until he calmed down. He was scared as I am sure any of us would be. He then had another seizure like thing and we was able to talk a little more as time went on and he calmed down. I am very greatful to the his family for helping us out with the kids this weekend, especially yesterday when I was packing up!
So who knows what is going on as usual. We are home now and he has PT tomorrow and Weds. He sees our family doctor tomorrow also and then the Henry Ford doctor on Thursday. He sees a pain specialist next week along with his neurologist. Someone, some where has to know what is going on. Or have an idea!! At least I will be around now for the next few apts with doctors and I can push them to try and answer some of this. Things have changed which means something has changed and waiting to just see what else happens is NOT an option!!
So anyway I look forward to (weather permitting) going to the zoo with Tracy and the boys on Weds. So at least I have something else to look forward to also!
I was excused from jury duty after sitting for 4 hours and being called for case. I just told the judge anything past that day I couldn't do because of all that was going on here at home and he was quick to excuse me! Nice man!!! :-)
Ok it's late and he has PT early so I am off to bed! Thanks again to everyone for all their support and prayers and help!! We are very greatful!!
Tuesday, June 30, 2009
Last Day of June
Ok so most of you know Josh went into the hospital last week because he seemed super out of it and the left side of his face was all droopy.
They concluded that it was not a stroke (thank GOD!) but most likely Bells Palsy. He unfortunatly had to stay in the hospital one night because the doctors are annoying and not paying attention. He has a seizure and they gave him atavan and then valium. So not only was the left side of his face all droopy now he was super drugged up!
Anyway he came home Thursday and we headed for the cottage. Well it was an interesting weekend. Josh continued to have problems speaking clearly and his face would still kind of sag. He spent two days (Fri and Sat) going from one thing to the next like he was running on some energizer bunny motor. Sunday came and he slept most of the day, not staying awake for more than an hour or so at a time. Monday came and the same thing. We came home Monday night and he slept.
This morning he had PT and then he came home and slept. I'm not kidding, I'm not exaggerating, he was litterally only awake for about an hour at a time and then out for like 3! VERY frustrating. I do not know if it is the medication doing this or what, but I have told him he needs to call his doctors tomorrow and see what they say.
I have jury duty tomorrow! Yeah right like I need this right now!! Anyway I am very happy that Tracy will be here tomorrow to help Josh and the kids. I am praying that my day will be fast downtown and it will be all over with!!!
Ok so otherwise Josh is continuing with PT and it really is helping him. Obviously they are still playing with his meds, but I can say that he has not had a seizure in the last 3 days! Watch that change now because I actually wrote it down!! Always seems to happen that way!
Ok off to bed! I hope this is reaching everyone I really don't know who reads and who doesn't! Anyway thanks for all the thoughts and prayers!!!
They concluded that it was not a stroke (thank GOD!) but most likely Bells Palsy. He unfortunatly had to stay in the hospital one night because the doctors are annoying and not paying attention. He has a seizure and they gave him atavan and then valium. So not only was the left side of his face all droopy now he was super drugged up!
Anyway he came home Thursday and we headed for the cottage. Well it was an interesting weekend. Josh continued to have problems speaking clearly and his face would still kind of sag. He spent two days (Fri and Sat) going from one thing to the next like he was running on some energizer bunny motor. Sunday came and he slept most of the day, not staying awake for more than an hour or so at a time. Monday came and the same thing. We came home Monday night and he slept.
This morning he had PT and then he came home and slept. I'm not kidding, I'm not exaggerating, he was litterally only awake for about an hour at a time and then out for like 3! VERY frustrating. I do not know if it is the medication doing this or what, but I have told him he needs to call his doctors tomorrow and see what they say.
I have jury duty tomorrow! Yeah right like I need this right now!! Anyway I am very happy that Tracy will be here tomorrow to help Josh and the kids. I am praying that my day will be fast downtown and it will be all over with!!!
Ok so otherwise Josh is continuing with PT and it really is helping him. Obviously they are still playing with his meds, but I can say that he has not had a seizure in the last 3 days! Watch that change now because I actually wrote it down!! Always seems to happen that way!
Ok off to bed! I hope this is reaching everyone I really don't know who reads and who doesn't! Anyway thanks for all the thoughts and prayers!!!
Wednesday, June 17, 2009
Our Anniversary
Ok well it's our 4th anniversary and at least we didn't forget this year. He was so busy with work and I was just so happy to be done with school last year that we both forgot until much later in the day. We both remembered earlier this year, even though we still didn't really do anything for it. Josh was in too much pain today.
Josh had PT this morning and it seems like the treatments he is going through are helping. After going to the zoo on Sunday (for 4 hours and him walking the whole time) he realized he was starting to get some feeling back in his hands and lower legs and feet that he hasn't had in a long time. Now unfortunatly the feeling that is coming back is pain, but we'll go one thing at a time.
He continues to have seizure activity and the neurologist added another medication for him to take before taking him off another. He doesn't want to leave him with no seizure med until this new one is up to the correct dosage! The neurologist also believes that his seizures are physiological, and not psychological. He told Josh that epilepsy can manifest itself in multiple parts of the body, even the spine. SO....... he did say the seizures are absolutely not being cause by his brain, but are from somewhere else. So what does that mean? It basically means we have to try and find the best group of meds to help keep it under control.
Josh still has serious balance issues and his right leg is still having trouble keeping up with the rest of his body and responding the way it should. (according to the neurologist that is a side effect to epilepsy)
So I think that is the basics with Josh right now. It has really just become a part of daily life with the kids and me to see Josh have a seizure or two or however many. Emily likes to kind of just stand by him or tries to kiss him to wake him up when it happens. As soon as he is conscience again, she goes back to what she was doing.
As for Billy, he is 4 months old now and he is 15lbs 7 oz and 25 inches long! He's a chunker!!!
I am super thrilled to be done with school now! I do still have jury duty on July 1st but we have someone (thanks Tracy) coming to stay with Josh and the kids so I can just get it over and done with. Josh can take care of the kids (he is even doing more and more diapers, even poopy diapers!) the problem is if he has a seizure no one would be around to make sure he comes out of it and the kids are ok. So that is our dilema when it comes to Josh watching the kids all day when I am at work. He has stayed with one or the other while I have run up to the store or something, but not for a super long period of time, and most of the time which ever child is with him is usually sleeping.
Ok so that's it for now. As for what's next? I'm not totally sure. We are very hopeful with his therapy so that's good. I am not sure what the course of treatment/diagnosis is going to happen with the seizures. I think for now it's just figuring out the right meds.
The kids and I are doing great and honestly if anyone is around at all this summer please don't hesitate to come and distract Josh for awhile. He is having a lot of trouble with not being able to do everything he wants to or 'should' be doing. Come, visit, distract!! Thanks! Love, hugs, prayers to everyone who has been doing the same for us!!
Josh had PT this morning and it seems like the treatments he is going through are helping. After going to the zoo on Sunday (for 4 hours and him walking the whole time) he realized he was starting to get some feeling back in his hands and lower legs and feet that he hasn't had in a long time. Now unfortunatly the feeling that is coming back is pain, but we'll go one thing at a time.
He continues to have seizure activity and the neurologist added another medication for him to take before taking him off another. He doesn't want to leave him with no seizure med until this new one is up to the correct dosage! The neurologist also believes that his seizures are physiological, and not psychological. He told Josh that epilepsy can manifest itself in multiple parts of the body, even the spine. SO....... he did say the seizures are absolutely not being cause by his brain, but are from somewhere else. So what does that mean? It basically means we have to try and find the best group of meds to help keep it under control.
Josh still has serious balance issues and his right leg is still having trouble keeping up with the rest of his body and responding the way it should. (according to the neurologist that is a side effect to epilepsy)
So I think that is the basics with Josh right now. It has really just become a part of daily life with the kids and me to see Josh have a seizure or two or however many. Emily likes to kind of just stand by him or tries to kiss him to wake him up when it happens. As soon as he is conscience again, she goes back to what she was doing.
As for Billy, he is 4 months old now and he is 15lbs 7 oz and 25 inches long! He's a chunker!!!
I am super thrilled to be done with school now! I do still have jury duty on July 1st but we have someone (thanks Tracy) coming to stay with Josh and the kids so I can just get it over and done with. Josh can take care of the kids (he is even doing more and more diapers, even poopy diapers!) the problem is if he has a seizure no one would be around to make sure he comes out of it and the kids are ok. So that is our dilema when it comes to Josh watching the kids all day when I am at work. He has stayed with one or the other while I have run up to the store or something, but not for a super long period of time, and most of the time which ever child is with him is usually sleeping.
Ok so that's it for now. As for what's next? I'm not totally sure. We are very hopeful with his therapy so that's good. I am not sure what the course of treatment/diagnosis is going to happen with the seizures. I think for now it's just figuring out the right meds.
The kids and I are doing great and honestly if anyone is around at all this summer please don't hesitate to come and distract Josh for awhile. He is having a lot of trouble with not being able to do everything he wants to or 'should' be doing. Come, visit, distract!! Thanks! Love, hugs, prayers to everyone who has been doing the same for us!!
Wednesday, June 10, 2009
As for now......
Well Josh went and saw his family physician today. His doctor does not believe that his seizures are psychogentic as is the diagnosis from Henry Ford. (now all of this is being reported to me by Josh). His doctor feels that because they can not find a reason for the seizures as of now, that is why they are turning to the psychogentic diagnosis.
His family doc also believes that because of one of the meds he is on it is counter acting some of the pain meds and that is causing him to have more pain. It is suggested that he talk with his neurologist about it and possibly see the pain specialist in with his Neurologist again.
Josh goes and sees his neurologist on Monday and we will wait and see what he thinks of all of this.
Josh continues to have PT twice a week and it really wipes him out. He has had a few seizures the last few nights as I am getting Emily ready for bed. He was able to cut the grass last night though even though he ended up having 3 seizures in a row after he was done with that.
Josh has started having a few issues with his legs not responding and causing him to fall. Hopefully he will remember to bring that up to his neurologist Monday also. He goes to stand up or walk and occasionally his legs do not listen and they don't move but he does.
I am almost done with school (Thank GOD!) and Monday will be my last work day and summer here we come! I will be able to drive Josh to his apts after Monday which should make him feel better. He feels like a drain on most people but at least I signed up for the better or worse stuff!! :-)
As for the kids, they are doing so well! Emily can not wait for it to be warm enough to go play at the beach! She is starting to get her canine teeth now, but they don't seem to bother her tooo much! Billy is growing like crazy. He's getting so big! He will be 4 months tomorrow and we have his apt next week also. I just started him on cereal at night the last few nights and he seems to love it! Emily was trying to help feed him the other night and wanted a bite of the cereal. (rice cereal) So I gave her a little bit and she almost threw up on me! It was funny to see her react that fast!
Thank you for all the thoughts and prayers! We are hoping to have social security by the end of the summer, but it's not like the government works very fast!
I'll update more Monday or so after his apt with the neurologist!
His family doc also believes that because of one of the meds he is on it is counter acting some of the pain meds and that is causing him to have more pain. It is suggested that he talk with his neurologist about it and possibly see the pain specialist in with his Neurologist again.
Josh goes and sees his neurologist on Monday and we will wait and see what he thinks of all of this.
Josh continues to have PT twice a week and it really wipes him out. He has had a few seizures the last few nights as I am getting Emily ready for bed. He was able to cut the grass last night though even though he ended up having 3 seizures in a row after he was done with that.
Josh has started having a few issues with his legs not responding and causing him to fall. Hopefully he will remember to bring that up to his neurologist Monday also. He goes to stand up or walk and occasionally his legs do not listen and they don't move but he does.
I am almost done with school (Thank GOD!) and Monday will be my last work day and summer here we come! I will be able to drive Josh to his apts after Monday which should make him feel better. He feels like a drain on most people but at least I signed up for the better or worse stuff!! :-)
As for the kids, they are doing so well! Emily can not wait for it to be warm enough to go play at the beach! She is starting to get her canine teeth now, but they don't seem to bother her tooo much! Billy is growing like crazy. He's getting so big! He will be 4 months tomorrow and we have his apt next week also. I just started him on cereal at night the last few nights and he seems to love it! Emily was trying to help feed him the other night and wanted a bite of the cereal. (rice cereal) So I gave her a little bit and she almost threw up on me! It was funny to see her react that fast!
Thank you for all the thoughts and prayers! We are hoping to have social security by the end of the summer, but it's not like the government works very fast!
I'll update more Monday or so after his apt with the neurologist!
Friday, June 5, 2009
June 5, 2009
I haven't done much on here lately because not much has changed. Josh has been able to do more and is working really hard to keeping up with that. He wakes up in the morning and gets Emily ready for me which is a huge help. He usually stays up and tries to do something.
As far as I have seen he has only had a few small seizures that I have not really told him about. They were happening because he was very tired and pushing himself. As we already know they happen much more fequently when he is tired.
He met with the psychologist yesterday and goes back in a few weeks. They have not found out exactly why is he having the seizures, but we are kind of just moving on from that and focusing on his physical therapy. He still goes twice a week and they are increasing the amount of time he has been there and I think it's helping him. He still has balance issues and has to walk with his canes to feel more steady!
Last weekend we were at the cottage and Josh helped to cut the grass. It was a good two hours of walking and cutting grass for multiple houses and he did a great job. He was completely spent after that though! I try not to tell him he can't do something. If he feels like he can then I say go for it!
As for the kids and I we are doing great. I am almost done with school which will be wonderful! 5 more days with students and 1 more work day after that! I plan on bringing the kids with me to work that last work day (since it's Monday), and I just hope that it won't be too much for Emily!
As far as I have seen he has only had a few small seizures that I have not really told him about. They were happening because he was very tired and pushing himself. As we already know they happen much more fequently when he is tired.
He met with the psychologist yesterday and goes back in a few weeks. They have not found out exactly why is he having the seizures, but we are kind of just moving on from that and focusing on his physical therapy. He still goes twice a week and they are increasing the amount of time he has been there and I think it's helping him. He still has balance issues and has to walk with his canes to feel more steady!
Last weekend we were at the cottage and Josh helped to cut the grass. It was a good two hours of walking and cutting grass for multiple houses and he did a great job. He was completely spent after that though! I try not to tell him he can't do something. If he feels like he can then I say go for it!
As for the kids and I we are doing great. I am almost done with school which will be wonderful! 5 more days with students and 1 more work day after that! I plan on bringing the kids with me to work that last work day (since it's Monday), and I just hope that it won't be too much for Emily!
Tuesday, May 26, 2009
Memorial Day weekend
Well the weekend went very well. Josh helped my dad work on the golf cart at the cottage. He did a lot of walking too with the dog and the kids and I. He did really well considering he was coming off being in bed for 8 days. He had a few seizures but nothing too bad. He seemed to have them after spending a long time focusing on doing something and it happens when he starts to relaxe. This is what we all have noticed in the past too. So maybe with more strength will come less seizures!
Josh would really like to be able to take care of the kids when I go back to school in the fall. He isn't too thrilled thinking about the poopy diapers, but when it would save us a tremendous amount of money he says he will deal with it. The main thing though is that he needs to have his strength up and needs to be more sure on his feet. He still gets dizzy spells and it throws off his balance.
Josh keeps telling me that he can't wait until I am done with work for the summer so he can be with the kids all the time and not miss anything. He really feels like he missed a lot being in the hospital that long and away from the kids. Emily is growing up so fast and Billy is right behind and he doesn't want to miss a minute of it!
He will continue to have PT twice a week for a few weeks. He would love to cut it down to just once a week right now, but he needs it to re-gain his strength from his bed stay. I told him he needs to go twice this week and possibly next week, then he can consider (after talking with his PT) going down to once a week. He is so worried about running out of visits that are covered by insurance that he isn't focusing enough on what he needs.
Josh really feels like he is looking bad to everyone and he is trying so hard to just be normal and do everything he can, he doesn't always want to believe that he can't do what he wants. He spent a lot of time sleeping this weekend, but he would also go for some pretty long walks so, as time goes on he will get more and more strong and hopefully there will be less time sleeping and less seizures! We will continue to work with the doctors for the best course of treatment!
Ok that's it for now! THank you all again!!
Josh would really like to be able to take care of the kids when I go back to school in the fall. He isn't too thrilled thinking about the poopy diapers, but when it would save us a tremendous amount of money he says he will deal with it. The main thing though is that he needs to have his strength up and needs to be more sure on his feet. He still gets dizzy spells and it throws off his balance.
Josh keeps telling me that he can't wait until I am done with work for the summer so he can be with the kids all the time and not miss anything. He really feels like he missed a lot being in the hospital that long and away from the kids. Emily is growing up so fast and Billy is right behind and he doesn't want to miss a minute of it!
He will continue to have PT twice a week for a few weeks. He would love to cut it down to just once a week right now, but he needs it to re-gain his strength from his bed stay. I told him he needs to go twice this week and possibly next week, then he can consider (after talking with his PT) going down to once a week. He is so worried about running out of visits that are covered by insurance that he isn't focusing enough on what he needs.
Josh really feels like he is looking bad to everyone and he is trying so hard to just be normal and do everything he can, he doesn't always want to believe that he can't do what he wants. He spent a lot of time sleeping this weekend, but he would also go for some pretty long walks so, as time goes on he will get more and more strong and hopefully there will be less time sleeping and less seizures! We will continue to work with the doctors for the best course of treatment!
Ok that's it for now! THank you all again!!
Friday, May 22, 2009
May 22, 2009
Well Josh is out of the hospital. He is back to trying to keep the nausea under control. He was not given his anti-nausea pill while in the hospital and he has horrible motion sickness. As long as he takes his pill though he does ok.
He is noticing he gets tired extra fast right now, but he did spend 8 days in bed. They did not let him get out of bed so I'm sure it will take awhile for him to build up some of the little strength he has.
He does have to follow up with a couple doctors now and figure out exactly what needs to be done at this point. We do know he is going to be working with someone to try and figure out what is triggering the seizures. They still don't know, but there is no reason to keep him in the hospital to try and figure that out. He will be following up with his neurologist in a few weeks.
He goes to physical therapy twice next week and needs to get back on track with that. Hopefully he will have more strengthening exercises and the hope is he can get more secure on his own two feet.
We are still working with the social security lawyers to get all that done, but it is not a quick process. We are hoping that things may get sped up soon since we have proof of seizures and that they are not able to be controlled as of yet. We just need doctors to state all that.
We are all looking forward to spending the long weekend at the cottage! We are also looking forward to school being over (only 14 student days left, + 1 teacher day). It will be nice to have a good break of no daycare cost! The kids are doing well though and that is important!
We are hoping to spend time at the cottage in Lexington and the cabin in Cadillac. I have jury duty July 1st, but I may have to take the kids with me! That would get me out of it I would imagine!!! We are planning on going to the cabin for the 4th of July get together.
Hopefully something will start to happen soon, (social security, mortagage modification that we are working on also, PT, finding seizure triggers) so we can try to have as normal of a summer as we can!
I will continue to update this when I have more to share.
He is noticing he gets tired extra fast right now, but he did spend 8 days in bed. They did not let him get out of bed so I'm sure it will take awhile for him to build up some of the little strength he has.
He does have to follow up with a couple doctors now and figure out exactly what needs to be done at this point. We do know he is going to be working with someone to try and figure out what is triggering the seizures. They still don't know, but there is no reason to keep him in the hospital to try and figure that out. He will be following up with his neurologist in a few weeks.
He goes to physical therapy twice next week and needs to get back on track with that. Hopefully he will have more strengthening exercises and the hope is he can get more secure on his own two feet.
We are still working with the social security lawyers to get all that done, but it is not a quick process. We are hoping that things may get sped up soon since we have proof of seizures and that they are not able to be controlled as of yet. We just need doctors to state all that.
We are all looking forward to spending the long weekend at the cottage! We are also looking forward to school being over (only 14 student days left, + 1 teacher day). It will be nice to have a good break of no daycare cost! The kids are doing well though and that is important!
We are hoping to spend time at the cottage in Lexington and the cabin in Cadillac. I have jury duty July 1st, but I may have to take the kids with me! That would get me out of it I would imagine!!! We are planning on going to the cabin for the 4th of July get together.
Hopefully something will start to happen soon, (social security, mortagage modification that we are working on also, PT, finding seizure triggers) so we can try to have as normal of a summer as we can!
I will continue to update this when I have more to share.
Monday, May 18, 2009
May 18,2009
Well I talked with Josh and he has been told that he will be coming home Weds afternoon.
He had a VERY bad day yesterday. I do not know how many seizures he had but he doesn't remember anything from yesterday and even this morning is hazy. He does not remember my dad and I being there yesterday. He doesn't know if he had any seizures today and doesn't really want to ask.
He was given quite a bit of atavan yesterday which contributes to his lack of memory and to the haziness today. He did say though that the neurologist was not happy that they had given him the atavan because he is not supposed to be getting that.
Other than all of that not much else is new. He is having issues with his IV and I hope that gets resolved soon.
He is very anxious to get out of there and work on recovery more. We will hopefully have some sort of game plan before he leaves Henry Ford.
I did ask him if he was going to feel up to going to the cottage for the holiday weekend and he was very emphatic and said YES!!!
I have 18 more days of school left!!!!
I'll update more when I know!
He had a VERY bad day yesterday. I do not know how many seizures he had but he doesn't remember anything from yesterday and even this morning is hazy. He does not remember my dad and I being there yesterday. He doesn't know if he had any seizures today and doesn't really want to ask.
He was given quite a bit of atavan yesterday which contributes to his lack of memory and to the haziness today. He did say though that the neurologist was not happy that they had given him the atavan because he is not supposed to be getting that.
Other than all of that not much else is new. He is having issues with his IV and I hope that gets resolved soon.
He is very anxious to get out of there and work on recovery more. We will hopefully have some sort of game plan before he leaves Henry Ford.
I did ask him if he was going to feel up to going to the cottage for the holiday weekend and he was very emphatic and said YES!!!
I have 18 more days of school left!!!!
I'll update more when I know!
Sunday, May 17, 2009
Rough day
Quick update:
Well Josh had two days with no seizures. The doctor came in to see him today and was very surprised by the lack of seizures. Well my dad and I went to see him today and we left around 2:30pm and by then he had 8 seizures. 4 while we were there. They gave him 3 doses of atavan and it was making him VERY loopy.
We should hear more about a plan to handle these things tomorrow. There are a few other doctors who will be in to see him tomorrow and we have to wait for their recommondations before he can be released. My guess is that he won't be coming home tomorrow but maybe on Tuesday!
I'll update more tomorrow when I know!
Well Josh had two days with no seizures. The doctor came in to see him today and was very surprised by the lack of seizures. Well my dad and I went to see him today and we left around 2:30pm and by then he had 8 seizures. 4 while we were there. They gave him 3 doses of atavan and it was making him VERY loopy.
We should hear more about a plan to handle these things tomorrow. There are a few other doctors who will be in to see him tomorrow and we have to wait for their recommondations before he can be released. My guess is that he won't be coming home tomorrow but maybe on Tuesday!
I'll update more tomorrow when I know!
Thursday, May 14, 2009
May 14, 2009
Josh will be staying in the hospital over the weekend at least.
The doctors do not know what is causing the seizures, but they do emphasize that he can not control them as of now. The hope is we can figure out what the triggers are for the seizures and then attempt to try and limit the triggering or whatever. He was told though that we may not ever truly find out the trigger and we will have to manage.
Obviously this is not the news he wanted to hear. It's tough to swallow that they may not go away. I try to tell him not to focus on that part and just take things one day at a time and work on that. They continue to monitor him down at Henry Ford and play around with things to see if they can 'see' any change.
They have ruled out epilepsy as of right now. Which is a good thing, however they are taking him off some of his meds to make sure that it doesn't change anything.
This continues to be very frustrating for him and everyone else. The last thing anyone wants is for something to be missed. I am confident that the doctors are doing everything they can down at Henry Ford to figure this out. As we have already found out though...... Josh is not an easy case!
Thank you for all the thoughts and prayers from everyone! We constantly think about you all too!!
The doctors do not know what is causing the seizures, but they do emphasize that he can not control them as of now. The hope is we can figure out what the triggers are for the seizures and then attempt to try and limit the triggering or whatever. He was told though that we may not ever truly find out the trigger and we will have to manage.
Obviously this is not the news he wanted to hear. It's tough to swallow that they may not go away. I try to tell him not to focus on that part and just take things one day at a time and work on that. They continue to monitor him down at Henry Ford and play around with things to see if they can 'see' any change.
They have ruled out epilepsy as of right now. Which is a good thing, however they are taking him off some of his meds to make sure that it doesn't change anything.
This continues to be very frustrating for him and everyone else. The last thing anyone wants is for something to be missed. I am confident that the doctors are doing everything they can down at Henry Ford to figure this out. As we have already found out though...... Josh is not an easy case!
Thank you for all the thoughts and prayers from everyone! We constantly think about you all too!!
Wednesday, May 13, 2009
Tuesday, May 12, 2009
Josh is at Henry Ford
As of 9:30 this morning Josh is in his room down at Henry Ford. He had 4 seizures between 9:30am and 11:30am according to my dad and that is when he left.
Josh is allowed to have visitors anytime. It sounds like it's a decent room and it is a private room.
They have him all hooked up to electrodes and are watching him like a hawk. They have audio and video recording at all times. As he has a seizure they come in and talk to him and tell him things to remember and as he comes out of it they ask him questions liek what is his name, what things they told him to remember and stuff like that. I just hope they find a trigger of some sort.
The kids and I are going to be staying at my parents while Josh is downtown since it's closer to work for me.
More updates to come as I find out new things!! I have a wonderful cold so I'm not moving around very fast right now! Luckily Billy has been sleeping through since last week. (knock on wood!)
22 days of school left!!!! (after today!)
Josh is allowed to have visitors anytime. It sounds like it's a decent room and it is a private room.
They have him all hooked up to electrodes and are watching him like a hawk. They have audio and video recording at all times. As he has a seizure they come in and talk to him and tell him things to remember and as he comes out of it they ask him questions liek what is his name, what things they told him to remember and stuff like that. I just hope they find a trigger of some sort.
The kids and I are going to be staying at my parents while Josh is downtown since it's closer to work for me.
More updates to come as I find out new things!! I have a wonderful cold so I'm not moving around very fast right now! Luckily Billy has been sleeping through since last week. (knock on wood!)
22 days of school left!!!! (after today!)
Saturday, May 2, 2009
Henry Ford is next......
Well Josh went and saw the neurologist yesterday. My dad took him and went in to meet the doctor to make sure nothing was forgotten. So hear is what was said:
* Full body EMG was mostly normal, but he does have some neuropathy in his lower legs. Nothing to explain the lack of feeling in his arms.
* Neuropsych test was MUCH better the 2nd time most likely due to the change in some medications before the 2nd day of the test. Everything seems to fall in line with medication issues.
* As for the seizures is has been put on Depacote (samples first to make sure there is no reaction to this one!). The doctor is also sending him to Henry Ford in Ypsilanti to their epilepsy clinic. It will most likely be two days but could be more or less. They will test him to figure out what his triggers are for these seizures.
* The seizures have been called pseudo-seizures, which means they have a trigger and he may be able to control them once we figure out what is causing them. Unfortunatly he has had quite a few since his appointment yesterday. So we will be making the call to get him scheduled as soon as possible.
Josh also saw our family physician this week.
*His blood work looks fine. No liver issues or anything else. We will continue to monitor considering the meds he is on.
* Dr Sams told Josh that the call for being able to drive is up to him. Josh did drive to the pharmacy and the store and it took a lot out of him. He has decided that it's probably not a good idea yet for him to drive.
*He has a script for outpatient therapy and will be starting that on Monday.
That's it for now. We have Billy's baptism tomorrow so that should be fun!
Thanks for all the prayers and support!
* Full body EMG was mostly normal, but he does have some neuropathy in his lower legs. Nothing to explain the lack of feeling in his arms.
* Neuropsych test was MUCH better the 2nd time most likely due to the change in some medications before the 2nd day of the test. Everything seems to fall in line with medication issues.
* As for the seizures is has been put on Depacote (samples first to make sure there is no reaction to this one!). The doctor is also sending him to Henry Ford in Ypsilanti to their epilepsy clinic. It will most likely be two days but could be more or less. They will test him to figure out what his triggers are for these seizures.
* The seizures have been called pseudo-seizures, which means they have a trigger and he may be able to control them once we figure out what is causing them. Unfortunatly he has had quite a few since his appointment yesterday. So we will be making the call to get him scheduled as soon as possible.
Josh also saw our family physician this week.
*His blood work looks fine. No liver issues or anything else. We will continue to monitor considering the meds he is on.
* Dr Sams told Josh that the call for being able to drive is up to him. Josh did drive to the pharmacy and the store and it took a lot out of him. He has decided that it's probably not a good idea yet for him to drive.
*He has a script for outpatient therapy and will be starting that on Monday.
That's it for now. We have Billy's baptism tomorrow so that should be fun!
Thanks for all the prayers and support!
Tuesday, April 21, 2009
I spoke too soon......
I really need to learn that as soon as I say something positive it gets erased. So much for not having seizure episodes. He had one in his sleep on Saturday. I didn;t mention it to him until I asked if he has had any recent episodes. He said no, so I told him he had one in his sleep. So for all I know he is still having them while I am at work!!
Josh did finish the EMG testing and the person who did the testing told him he has some signs on neuropathy, but that he would guess that Josh has spinal cord damage. We go see the neurologist in a few weeks and we'll get the answers to whether that is true or not.
Currently Josh is trying really hard not to let this all get to him. He cleaned off our front deck last weekend so the dog and Emily could be out there without getting into too much trouble. He does spend time outside when the weather is nice. He wants to cut the grass and get the yard looking nice.
Since my parents are in Mexico this week the kids and I have been staying at their house since it is closer to work for me. I will be going today to pick up Josh and the dog and they will come out and stay at my parents with us. He had his nurse, PT and OT today so he stayed home for those. He wants to make sure he takes care of my dad's groundhog problem while we are out there!
Ok I think that's about it for right now. School is going ok for me. I came back at a very busy time and have been out of my classroom quite a bit. My student teacher from the fall, who also did my maternity leave was back while I did Kindergarten round-up. Now she's gone and I miss her! She has been great and it's been very easy on the kids. I never had to worry about school or my class because I knew she was there! I did tell her that if I could afford it I would share my paycheck to keep her here with me! Good luck Kristen! I will miss you!!!!
Josh did finish the EMG testing and the person who did the testing told him he has some signs on neuropathy, but that he would guess that Josh has spinal cord damage. We go see the neurologist in a few weeks and we'll get the answers to whether that is true or not.
Currently Josh is trying really hard not to let this all get to him. He cleaned off our front deck last weekend so the dog and Emily could be out there without getting into too much trouble. He does spend time outside when the weather is nice. He wants to cut the grass and get the yard looking nice.
Since my parents are in Mexico this week the kids and I have been staying at their house since it is closer to work for me. I will be going today to pick up Josh and the dog and they will come out and stay at my parents with us. He had his nurse, PT and OT today so he stayed home for those. He wants to make sure he takes care of my dad's groundhog problem while we are out there!
Ok I think that's about it for right now. School is going ok for me. I came back at a very busy time and have been out of my classroom quite a bit. My student teacher from the fall, who also did my maternity leave was back while I did Kindergarten round-up. Now she's gone and I miss her! She has been great and it's been very easy on the kids. I never had to worry about school or my class because I knew she was there! I did tell her that if I could afford it I would share my paycheck to keep her here with me! Good luck Kristen! I will miss you!!!!
Friday, April 17, 2009
4/17/09
I know a lot of you are wondering how Josh did at the cottage by himself last weekend. He actually did pretty well and did more walking then he has done in a long time. Because of all the walking though he didn't leave the cottage on Sunday much and not at all on Monday until I came to get him.
He has been outside as the weather has been nicer this week. I have come home twice this week finding him reading a book on the deck in front of the house. He spent a lot of time walking around with Emily yesterday outside and paid for it later. He was extremely tired last night and in a lot of pain. I told him at least he can look at it as good PT! Today he walked up half the block with Em, Billy, the dog and me. He's reading out on the deck again. He doesn have to come in occasionally to help take some strain off his neck, that really hurts him fast when he is sitting up and walking around.
I have gone back to work and I think I'll make it! Obviously I would much rather be home with the kids, and Josh says he would much rather be at work. He's really starting to feel bad about not being able to go back to work. He has heard from people at Uncle Ed's and he knows they miss him. Some guys have even quit since he has not been able to come back to work.
Josh has been looking at ways he could possibly make some money since he is not able to do an actual work day. He's trying to stay positive about his recovery but it's getting really hard. He is very frustrated that he just can't walk well and he feels like an old man. He keeps hearing about jobs he would love to have but sees it at something way down the road, which is not easy for him to handle. He wants to be out and working. He's always been working since he was young, and it's hard for him to focus on himself and his recovery. I keep trying to tell him to just take it one day at a time, but he's still a man!!
Josh had his last doctor's apt for awhile today. He had the 2nd part of his EMG (nerve testing). He goes back to see the neurologist on May 1st. (I think) Hopefully soon he will be able to do outpatient therapy.
OH!!! No seizures in over a week!! I see this as a great step. 6 months of being clear and the doctors say he will be able to drive!!
Billy had his 2 month apt this week and he's getting to be a big boy! He's 12 lbs 4 oz and 22 inches long!
Ok Em is calling, gotta go!
He has been outside as the weather has been nicer this week. I have come home twice this week finding him reading a book on the deck in front of the house. He spent a lot of time walking around with Emily yesterday outside and paid for it later. He was extremely tired last night and in a lot of pain. I told him at least he can look at it as good PT! Today he walked up half the block with Em, Billy, the dog and me. He's reading out on the deck again. He doesn have to come in occasionally to help take some strain off his neck, that really hurts him fast when he is sitting up and walking around.
I have gone back to work and I think I'll make it! Obviously I would much rather be home with the kids, and Josh says he would much rather be at work. He's really starting to feel bad about not being able to go back to work. He has heard from people at Uncle Ed's and he knows they miss him. Some guys have even quit since he has not been able to come back to work.
Josh has been looking at ways he could possibly make some money since he is not able to do an actual work day. He's trying to stay positive about his recovery but it's getting really hard. He is very frustrated that he just can't walk well and he feels like an old man. He keeps hearing about jobs he would love to have but sees it at something way down the road, which is not easy for him to handle. He wants to be out and working. He's always been working since he was young, and it's hard for him to focus on himself and his recovery. I keep trying to tell him to just take it one day at a time, but he's still a man!!
Josh had his last doctor's apt for awhile today. He had the 2nd part of his EMG (nerve testing). He goes back to see the neurologist on May 1st. (I think) Hopefully soon he will be able to do outpatient therapy.
OH!!! No seizures in over a week!! I see this as a great step. 6 months of being clear and the doctors say he will be able to drive!!
Billy had his 2 month apt this week and he's getting to be a big boy! He's 12 lbs 4 oz and 22 inches long!
Ok Em is calling, gotta go!
Saturday, April 11, 2009
Cottage
Well we have had an interesting week. (My last week off too before I go back to work!) We have found a new machine that is helping Josh with his pain! YAY!!! He has a TENS unit here at home (as long as insurance pays for it we get it keep it, otherwise in 2 months we have to send it back!) and he has only used it on his lower back so far and it's helping him tremendously! He has been taking MUCH less vicodin. Hopefully this will lead to lowering the morphine patch he's on too!!
Josh has been getting VERY stir crazy and is having a hard time being locked up in the house. SOOOO, when we went to the doctor this week a deal was agreed to. (between the doctor, me, and Josh). To try and help lift his mood he is at our cottage in Lexington for the weekend by himself. The kids and I went and dropped him off yesterday after one of his apts and he has called to check in as he agreed to. So far he seems sooo happy he's up there away from the city and not in our living room! I will be picking him up most likely on Monday since he has PT, OT and a nurse coming on Tuesday! We are really hoping that this helps to motivate him to do some more things around the house at his own pace!
He does still get very tired very fast. His neck and shoulder muscles are still pretty locked up which keeps him from being fully fuctional, along with the seizures. He had two on Thursday. We still don't know what is causing them. Until all of that is under control he will be unable to work. He is also not allowed to drive for a 1 year after his most recent seizure! This is going to be a big problem if we don't get those under total control. Social security is looking like it should be an easy fight, but you never know with the government!
Ok lets see what else this week...... He had the first of two visits for his full body EMG. This is the test that will tell us if there is nerve damage. He also finished his neuropsych exam this week and the doctor had him re-do part of it because he seemed to be functioning so much faster. (amazing what happens when you don't feel like throwing up constantly!)
Well I think we are taking more steps forward than backwards now. It's more like 3 steps forward and 1 back at this point instead of 2 and 1. I am looking forward to the summer! Josh wants to go to the cottage a lot and his cabin in Cadillac a lot! As long as we can travel to those places (despite our car and gas) I think it will really help Josh to recover more and more! I'm super excited for Emily to have a great summer at the cottage, cabin, and the zoo! She's getting so big!!! and she's soo smart! (I know I'm bias, but I should be!)
Thank you to everyone who has helped us out along the way in any capacity! We (I) would be as together as I think we are without all the support!
Josh has been getting VERY stir crazy and is having a hard time being locked up in the house. SOOOO, when we went to the doctor this week a deal was agreed to. (between the doctor, me, and Josh). To try and help lift his mood he is at our cottage in Lexington for the weekend by himself. The kids and I went and dropped him off yesterday after one of his apts and he has called to check in as he agreed to. So far he seems sooo happy he's up there away from the city and not in our living room! I will be picking him up most likely on Monday since he has PT, OT and a nurse coming on Tuesday! We are really hoping that this helps to motivate him to do some more things around the house at his own pace!
He does still get very tired very fast. His neck and shoulder muscles are still pretty locked up which keeps him from being fully fuctional, along with the seizures. He had two on Thursday. We still don't know what is causing them. Until all of that is under control he will be unable to work. He is also not allowed to drive for a 1 year after his most recent seizure! This is going to be a big problem if we don't get those under total control. Social security is looking like it should be an easy fight, but you never know with the government!
Ok lets see what else this week...... He had the first of two visits for his full body EMG. This is the test that will tell us if there is nerve damage. He also finished his neuropsych exam this week and the doctor had him re-do part of it because he seemed to be functioning so much faster. (amazing what happens when you don't feel like throwing up constantly!)
Well I think we are taking more steps forward than backwards now. It's more like 3 steps forward and 1 back at this point instead of 2 and 1. I am looking forward to the summer! Josh wants to go to the cottage a lot and his cabin in Cadillac a lot! As long as we can travel to those places (despite our car and gas) I think it will really help Josh to recover more and more! I'm super excited for Emily to have a great summer at the cottage, cabin, and the zoo! She's getting so big!!! and she's soo smart! (I know I'm bias, but I should be!)
Thank you to everyone who has helped us out along the way in any capacity! We (I) would be as together as I think we are without all the support!
Monday, April 6, 2009
If it's not one thing, it's another!
Well Josh can't just let anything be! He's now having some sort of allergic reaction to a medication. (We think.) Benedryl does help so he has been taking that but of course he then sleeps all the time! (A problem I wish I had right now!) We are waiting to hear back from the neurologist about that. (I'm sure they will take their time since they always do!)
He goes to see our family doctor tomorrow to ask more about this stomach pain. He also wants to start going to out patient physical therapy. That should be good for him to be able to get out and they can do more in an outpatient place than they can here at home. It would be nice if I could drop him off in the morning before work for therapy and then drop the kids off at daycare and after work pick everyone up! I don't think they do all day therapy though! (That is a joke!)
Josh is having another test completed on Weds. It's the neurologicalpsych testing. This will help to show if he has any deficits in brain function. (I won't make a joke there but it would be so easy!)
He goes on Friday for another test that the neurologists have ordered. He is going to have an EMG done of his whole body. They are splitting it into two days though. He will have the upper half this Friday and the lower half of his body next Friday. This is a test that will let us know if he has nerve damage. They stick a bunch of needles in him and then send electrical pulses down the needles into the nerves! Sounds like fun!
So that is this week. He will be having PT and OT coming out to the house this week also sometime. The nurse was here today and will be here again on Thursday, just to continue to check on him. Oh yeah and because of all the weight he has lost they have put in a consult to a nutritionist! Now any of you who know Josh, know he is beyond a picky eater so it will be interesting to hear how that goes!
More to come.....I'm sure!!
He goes to see our family doctor tomorrow to ask more about this stomach pain. He also wants to start going to out patient physical therapy. That should be good for him to be able to get out and they can do more in an outpatient place than they can here at home. It would be nice if I could drop him off in the morning before work for therapy and then drop the kids off at daycare and after work pick everyone up! I don't think they do all day therapy though! (That is a joke!)
Josh is having another test completed on Weds. It's the neurologicalpsych testing. This will help to show if he has any deficits in brain function. (I won't make a joke there but it would be so easy!)
He goes on Friday for another test that the neurologists have ordered. He is going to have an EMG done of his whole body. They are splitting it into two days though. He will have the upper half this Friday and the lower half of his body next Friday. This is a test that will let us know if he has nerve damage. They stick a bunch of needles in him and then send electrical pulses down the needles into the nerves! Sounds like fun!
So that is this week. He will be having PT and OT coming out to the house this week also sometime. The nurse was here today and will be here again on Thursday, just to continue to check on him. Oh yeah and because of all the weight he has lost they have put in a consult to a nutritionist! Now any of you who know Josh, know he is beyond a picky eater so it will be interesting to hear how that goes!
More to come.....I'm sure!!
Saturday, April 4, 2009
The rest of us.
I know some have been wondering about the kids and me so I thought I would post a quick thing about the rest of us.
Billy is getting big much faster than Emily ever did! He has a bit of a cold right now so sleeping has been rough.
Emily is getting big too! She's talking all the time and she will repeat everything you say so we have to beware!! She is definitely a bit of a drama princess too! Her facial expressions are sooo funny! She loves having Billy around and is really good with him. She will rock him in his swing or cover him with his blanket, or give him his pacifier. She loves to hug and kiss him and is very gentle with him, most of the time.
As for me, I go back to work a week from Tuesday. It's going to be SUPER hectic because it's the end of the school year and there is a lot going on. They have many meeting planned and all that good stuff so I won't even be in the classroom a lot for the 1st two weeks back. Luckily my student teacher I had in the fall will still be around (since she did my maternity leave) and that makes it soo much easier and less stress on my mind to have her in the classroom when I'm not.
I have been very busy even here at home (obviously), I look forward to going back to work, but I have truly love being with the kids all the time. That will be hard. Luckily I only have about 8 weeks of school and then I'll be home for the summer!
To battle the stress of everything I have started walking on my parents tredmill, or outside! The kids, puppy and I have already had one walking trip to Aunt Renee's! As the weather gets better, I plan to do more walking at the zoo!! I can't wait!
I supose that is the gist of things!
More to come I'm sure.......
Billy is getting big much faster than Emily ever did! He has a bit of a cold right now so sleeping has been rough.
Emily is getting big too! She's talking all the time and she will repeat everything you say so we have to beware!! She is definitely a bit of a drama princess too! Her facial expressions are sooo funny! She loves having Billy around and is really good with him. She will rock him in his swing or cover him with his blanket, or give him his pacifier. She loves to hug and kiss him and is very gentle with him, most of the time.
As for me, I go back to work a week from Tuesday. It's going to be SUPER hectic because it's the end of the school year and there is a lot going on. They have many meeting planned and all that good stuff so I won't even be in the classroom a lot for the 1st two weeks back. Luckily my student teacher I had in the fall will still be around (since she did my maternity leave) and that makes it soo much easier and less stress on my mind to have her in the classroom when I'm not.
I have been very busy even here at home (obviously), I look forward to going back to work, but I have truly love being with the kids all the time. That will be hard. Luckily I only have about 8 weeks of school and then I'll be home for the summer!
To battle the stress of everything I have started walking on my parents tredmill, or outside! The kids, puppy and I have already had one walking trip to Aunt Renee's! As the weather gets better, I plan to do more walking at the zoo!! I can't wait!
I supose that is the gist of things!
More to come I'm sure.......
Thursday, April 2, 2009
He's home
Well he is home now. The doctor was going to keep him again, but Josh wanted out. They are guessing that he has some form of colitis and he needs to WAY up the fiber in his diet!
Ok well he already has a horrible diet because of the nausea sooooo......
I'll see if I can slip some fiber into his Kool-Aid or something!!
He sees the Pain specialist tomorrow. And follows up with the family doctor in two weeks.
Frustration is HUGE!! He's still in a lot of pain, but at least he's at home instead of the hospital. They had a hard time keeping up with his meds and getting them straight. If they weren't going to do anything for him in the hospital he might at well be at home!
I'll update when we know more!
Josh has officially been terminated from him job. They have told him though that when he is able to return to work they want to rehire him for upper managment. I told him to ask if he could do it from the couch!! We know though he will not be able to drive/work for some time still. We are waiting for social security disability.
Ok well he already has a horrible diet because of the nausea sooooo......
I'll see if I can slip some fiber into his Kool-Aid or something!!
He sees the Pain specialist tomorrow. And follows up with the family doctor in two weeks.
Frustration is HUGE!! He's still in a lot of pain, but at least he's at home instead of the hospital. They had a hard time keeping up with his meds and getting them straight. If they weren't going to do anything for him in the hospital he might at well be at home!
I'll update when we know more!
Josh has officially been terminated from him job. They have told him though that when he is able to return to work they want to rehire him for upper managment. I told him to ask if he could do it from the couch!! We know though he will not be able to drive/work for some time still. We are waiting for social security disability.
Wednesday, April 1, 2009
March 31st
Josh has been having horrible abdominal pains. He called the doctor and they wanted him to go to the ER. This was yesterday afternoon (March 31st)
They did decide to keep him and are worried he may have diverticulitis. The surgeon looked at his CT today and said he doesn't see anything, but still doesn't like the pain he is in and will be looking further into it.
They are keeping him again tonight and hopefully we will get an answer to why he is in so much pain.
He may end up having a colonoscopy.
More to come!!
They did decide to keep him and are worried he may have diverticulitis. The surgeon looked at his CT today and said he doesn't see anything, but still doesn't like the pain he is in and will be looking further into it.
They are keeping him again tonight and hopefully we will get an answer to why he is in so much pain.
He may end up having a colonoscopy.
More to come!!
Where it all began.
It all started with a day he didn't remember. He believes he fell outside but doesn't completely know. He had seizure like activity in the doctor's office that night and the doctor called 911 and sent him to the hospital. This was December 3.
Finally on December 5th we had a diagnosis because Josh insisted on having an MRI of his neck. He has a Chiari Malformation. Josh had brain surgery December 15th. The bone of the skull is too tight around the cerabellum so his brain was protruding about 2cm out of his skull and pushing on the spinal cord.
He had surgery to make room for his brain and he came out of it GREAT!! He had no more headache, he had feeling back in all his limbs, all his seizure activity went away, everything seemed to be going great.
(December 29th) Then came the morning where he woke me up getting sick everywhere and having a temp over 100 degrees. He spent 10 days back in the hospital and no one ever confirmed that he had menegitis or not, but they treated him for it anyway. OK GREAT communication! He came home on IV antibiotics and we were hoping things were going to get better. Unfortunatly he had the headache back, numbness in his limbs was creaping back, he was VERY dizzy and was only able to walk with a walker. He felt sick all the time and was in a lot of pain.
He continued with at home PT and OT. Pain continued. Seizure episodes started to come back.
We went for a 2nd opinion to another surgeon because we felt that something was just not right. That surgeon ordered a bunch of tests which came back saying that surgically he was doing well. That was just last week.
The neurologists had also ordered some tests to try and fingure out what is going on. We have found out he is not having true seizures. They are called pseudo seizures. Something else is causing them (pain, stress, whatever).
We have determined though that he can't go back to work. (Big Shock!) We have filed for social security and hopefully he will not be denied and we won't have to wait too long. But we are dealing with the government!
Finally on December 5th we had a diagnosis because Josh insisted on having an MRI of his neck. He has a Chiari Malformation. Josh had brain surgery December 15th. The bone of the skull is too tight around the cerabellum so his brain was protruding about 2cm out of his skull and pushing on the spinal cord.
He had surgery to make room for his brain and he came out of it GREAT!! He had no more headache, he had feeling back in all his limbs, all his seizure activity went away, everything seemed to be going great.
(December 29th) Then came the morning where he woke me up getting sick everywhere and having a temp over 100 degrees. He spent 10 days back in the hospital and no one ever confirmed that he had menegitis or not, but they treated him for it anyway. OK GREAT communication! He came home on IV antibiotics and we were hoping things were going to get better. Unfortunatly he had the headache back, numbness in his limbs was creaping back, he was VERY dizzy and was only able to walk with a walker. He felt sick all the time and was in a lot of pain.
He continued with at home PT and OT. Pain continued. Seizure episodes started to come back.
We went for a 2nd opinion to another surgeon because we felt that something was just not right. That surgeon ordered a bunch of tests which came back saying that surgically he was doing well. That was just last week.
The neurologists had also ordered some tests to try and fingure out what is going on. We have found out he is not having true seizures. They are called pseudo seizures. Something else is causing them (pain, stress, whatever).
We have determined though that he can't go back to work. (Big Shock!) We have filed for social security and hopefully he will not be denied and we won't have to wait too long. But we are dealing with the government!
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