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!!
Tuesday, May 26, 2009
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!
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