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!!!!
Tuesday, April 21, 2009
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!
Subscribe to:
Comments (Atom)