I know it's been a long time since I have updated anything on Josh or the rest of us. Things have not changed a whole lot. Josh has certainly been making a very big effort to be more positive and try to change how he feels and things he does on his own since it seems as if his doctors have reached their limits.
He did have repeat MRI's (as he will every year) to make sure there are no changes or new developments. His neurology office was not too helpful when it came to the results, there were certainly things said that were not completely right, but we went back to a neuro-surgeon we say just over a year ago for a re-check. (He will get rechecked every year to make sure there are no changes)
Today was his apt and the doctor said his neuro exam has not changed much at all since last year, so that is good. He said things have really healed nicely and there is no need for any surgery right now. Bottom line is that things look good.
The MRI mentioned sinus issues and the surgeon said to go back to the ENT we saw last year for that. So we need to make an apt for that and maybe he can help with the snoring too, because we can not sleep in the same room together!!! It's not nice!
The surgeon also directed us to another doctor (in Mt Clemens, NOT Southfield) who is a physiatrist. He will see him mid Sept. This is a doctor who specializes in Physical Therapy and pain. YAY!! Maybe this is what we have been asking for! Josh really wants to get stronger and loosen up all at the same time! Hopefully this doctor will be able to help!!
Josh has a lot of trouble sleeping. He either can't sleep, or can't wake up! It's been very hard on him and everything. He is trying very hard to get off his pain meds, but honestly he will NEVER be pain free and learning to live with the pain is what he has to figure out. What is tolerable and what isn't? He keeps asking to stop taking many of his drugs and the doctor's don't seem to be listening to him, but maybe with some physical therapy and strength training he might start to feel better! He has been playing a lot more with the kids and trying very hard to be more a part of things.
He did have some stomach problems (very easily caused by all the drugs) and spent some time in the hospital in June/July. He was told to change some of the things he eats and continue to eat high fiber and all that with a new medication to coat his stomach. Hopefully adjusting/ stopping some of his meds will eventually help that too!
As for seizures, he was having quite a few after he came home from the hospital, but hasn't had any in weeks so that's good!
I go back to work in just over a week so he will be back to watching the kids twice a week. Both kids are doing very well. Emily is certainly learning how to be a hand full and be sassy! She has gotten much better with her potty training which is nice!! Billy is talking like crazy and certainly is a parrot at this point!! He is also sleeping in a big boy bed now instead of in the closed crib! It's been a struggle, he doesn't stay very well!!
Baby and I are doing well. I am feeling HUGE and the heat and humidity has been rough this summer so we have spent a lot of time at the cottage and on the beach! I am now in the 3rd trimester and he moves like crazy! A couple more months and Kainan Eric will be here!! My goal has been to get his room all together before I went back to work, but it's getting harder and harder to get anything done when it's been this hot! We'll see!
So that's the gist of what is going on with the Tonsor's. Hopefully more and more positive things will continue to happen!!
Thursday, August 19, 2010
Monday, May 10, 2010
I know it's been a long time!
I know it's been a long time since I have typed anything about anything going on with Josh. Since we moved things are good. Well relatively good. I know I am less stressed being closer to work and I know the kids LOVE our new house. Josh will always find something he would want to change, but I know it's still so much better than where we were.
Just about a month ago Josh made the decision that he WILL get of his cane by the end of the summer and walk without any assistance. Well in the same breath he is having a very hard time controlling his pain. It is taking over again and he is trying to figure out what is wrong. Of course he thinks something is MAJORLY wrong, but that's Josh. He is always thinking the worst! BUT, I have to say that I can tell a difference in him and so I was actually able to go to an apt with him during my Spring break and the neurologist changed his medication and doubled one of his medications that they still can't ever tell me why they want him on it. So now he's on double the dose and he reminds me of epileptic kids I have come across that are on some VERY heavy drugs! He has an even harder time remembering things (even though he will argue about things that happen), keeping his thoughts straight, walking, staying awake (even though he says he doesn't sleep at all), and his snoring is BEYOND horrible (which is probably why he feels like he isn't getting any sleep). (As I type this he has been sleeping since 1pm this afternoon and was up for about 10 mintues when I got home with the kids, and it's 8:30pm!)
I know we are both getting very frustrated with the doctor's just throwing more and more medication at him instead of what? I don't know but something!
He is going to have another MRI just to make sure nothing has changed in his head. I know his headaches have not gone away and have gotten worse and he frequently feels a lot of pressure! So we will see.
Josh also recently found out that his old company that he worked for (Uncle Ed's) would really like to have him back. That's great and he really wants to go back to work and feel like he's more useful (even though he does watch the kids 2 days a week), and it would make things a lot easier for me if he had something else to do, but I just don't know if he could physically handle it right now.
He still had seizures ( maybe 2 a week) and has started having black out episodes if he is out and starts to get anxious. So there is so much more to him going back to work than it probably seems. He can talk a GREAT game, but the day to day things can really wipe him out, or stress him out to the point where he is completely useless.
Our biggest hurddle right now is going to be this medication thing. Between the pain meds and the other medication they keep increasing it seems like the doctor;s are trying to comatose him!!!
So anyway for now that is what is going on with him. There are a few other tests he needs to go for and I know it won't get done until I finally schedule it, which is going to be easier for me to do once I am out of school!
As for me I am now 14 weeks pregnant and hoping the morning sickness will go away anyday now. Emily is doing good and we are still trying to get her potty trained but she is a VERY strong willed child! Billy is cutting teeth left and right and walking like a champ now!! The two of them LOVE to play together which is really nice!!
Just about a month ago Josh made the decision that he WILL get of his cane by the end of the summer and walk without any assistance. Well in the same breath he is having a very hard time controlling his pain. It is taking over again and he is trying to figure out what is wrong. Of course he thinks something is MAJORLY wrong, but that's Josh. He is always thinking the worst! BUT, I have to say that I can tell a difference in him and so I was actually able to go to an apt with him during my Spring break and the neurologist changed his medication and doubled one of his medications that they still can't ever tell me why they want him on it. So now he's on double the dose and he reminds me of epileptic kids I have come across that are on some VERY heavy drugs! He has an even harder time remembering things (even though he will argue about things that happen), keeping his thoughts straight, walking, staying awake (even though he says he doesn't sleep at all), and his snoring is BEYOND horrible (which is probably why he feels like he isn't getting any sleep). (As I type this he has been sleeping since 1pm this afternoon and was up for about 10 mintues when I got home with the kids, and it's 8:30pm!)
I know we are both getting very frustrated with the doctor's just throwing more and more medication at him instead of what? I don't know but something!
He is going to have another MRI just to make sure nothing has changed in his head. I know his headaches have not gone away and have gotten worse and he frequently feels a lot of pressure! So we will see.
Josh also recently found out that his old company that he worked for (Uncle Ed's) would really like to have him back. That's great and he really wants to go back to work and feel like he's more useful (even though he does watch the kids 2 days a week), and it would make things a lot easier for me if he had something else to do, but I just don't know if he could physically handle it right now.
He still had seizures ( maybe 2 a week) and has started having black out episodes if he is out and starts to get anxious. So there is so much more to him going back to work than it probably seems. He can talk a GREAT game, but the day to day things can really wipe him out, or stress him out to the point where he is completely useless.
Our biggest hurddle right now is going to be this medication thing. Between the pain meds and the other medication they keep increasing it seems like the doctor;s are trying to comatose him!!!
So anyway for now that is what is going on with him. There are a few other tests he needs to go for and I know it won't get done until I finally schedule it, which is going to be easier for me to do once I am out of school!
As for me I am now 14 weeks pregnant and hoping the morning sickness will go away anyday now. Emily is doing good and we are still trying to get her potty trained but she is a VERY strong willed child! Billy is cutting teeth left and right and walking like a champ now!! The two of them LOVE to play together which is really nice!!
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