It's been 4 years......

Well December was 4 years since Josh had his surgery for his Chiari.  It's certainly been a long road.  We continue to try and find the best way to handle all the medical and physical issues.

Last June Josh had his gall bladder removed, which should have been a routine no big deal surgery.  He also had a tumor  removed from his upper abdomen.  Unfortunately nothing ever goes routine with Josh and the morning after his surgery he woke up paralyzed from the waist down.....  He  was transferred down to St John Main and care was taken over by a physician who decided Josh was just a drug seeker and was basically faking it.  Called in a psych consult (who didn't support the conclusion he was faking it).  They put him on steroids and slowly his feeling nad movement came back.  No real diagnosis (that I know) was given for the paralyzation, but he was home. 

He went and saw an infectious disease doctor for possible reasons for the tumors and the vision and the weakness, and whatever else could be causing all or some of his problems.  The doctor did a bunch of blood tests and his lead level came back weird (I guess, not sure what the orginal  test says) but the doctor had him do a 24 hour urine collection to test for lead.  So that test comes back 8000 X's what it should be and it was repeated a couple times in the lab.  So the doctor has him do one more blood test which comes back normal and so he's kind of been dismissed.  It's all very strange! 

He also took a trip to the Cleveland Clinic which was basically a waste of time.  He needs to have a more specific reason to go down there and his neurologist isn't exactly helping with that.  It was eluded to that he needs more psych help than anything (mainly after looking at his med list) so after that trip we concluded that if all these doctors are going to assume it's mental then we will see if the mental doctor can help to coordinate all of it!

We finally got back in touch with the psychologist he liked down at Henry Ford and she agrees there is A LOT going on with him.  She is willing to start by getting him into the neurologist in the next rooms next to her office and start with him.  She has definitely suggested that he be seen all within a "System" wether U of M, Henry Ford whatever...... I went with him to his last session with her (per her request) and she is very good.  I think she understands as well as I do about what all we are dealing with and she is very willing to help weed it all out.  I mentioned there is a lot of distrust between Josh and doctors that has been built up over the last 4 years for sure.  She asked what my biggest concern is and really it's figuring out what is a real medical problem that can be treated and what is a side effect from "not being heard" by doctors, or drugs, or possible heavy metals....  It's all such a jigsaw!!

So basically it was nice to have someone else to seems to understand this is NOT a "mental" problem that he can just turn off and move on with life.  He can't just decide one day everything is fine, get up and do what he wants.  He has chronic pain cause by a whole list of things..... real pain that does not go away.  He does suffer from non-epileptic seizures which only means we do not know the cause of them, not that he is faking or they are any less serious.  His day to day life does and will continue to change constantly depending on what is going on.  As much as it seems like he's just lazy, depressed, and seemingly drugged out..... he's not!  Very hard to understand when you don't live it everyday. 

I am almost half way through my PhD and super busy with my job too.  I am still teaching kindergarten and this year we have full day kindergarten which has been awesome!!  I am enjoying my students but not all the new politics and such that have come with it this year.  It's very hard to keep focused on the kids and do right by them, but I am hoping very hard they are enjoying their kindergarten year! 

Emily is also in kindergarten this year and doing well, not that I am suprised.  Billy can't wait to go to school and has been telling us he has his own school with his own teacher but not sure where or who he goes with!  Kainan is definitely like his daddy!!  He's quite a handful!! 

So I will update more as I have the chance to.  Josh will be having a lot of doctor apts over the next few months, we just hope we can get a good handle on what is going on with him.  Thank you for all the thoughts and prayers! 

More tests......

I know some people are following everything going on with Josh and I know some are wondering if we have anything new to add.  He did see a surgeon today that is going to be running more tests, and it seems they are going to be getting these tests done much faster than originally thought.  Seems we have been able to cut out one doctor because the surgeon can do the same tests without the "middle man". 

He will be going for a CT scan tomorrow with contrast and then next week a colonoscopy, endoscopy and possible biopsies.  He is also supposed to get a PET scan done as soon as his finger heals.  He cut it pretty bad last night on a knife. 

Josh is still having trouble with his vision at times and thankfully my dad is going to be able to help make sure he is able to get to his apts.  After having to cancel an apt because of his vision and no last minute option to get him there, we aren't taking anymore chances.  We need to figure out what is going
on.
I very well could be missing something because I am not the one there doing it all and I have too many things going on to keep every detail of everything straight.

Only 19 more days of school for me and 7 more for Emily.  I am looking forward to Memorial Day weekend so I can hopfully get a lot of my class done and get a little further ahead on things.  I am doing a lot for a graduation for my students also so that has been time consuming.  Because of construction in our schools this summer I also have to have my classroom packed up and moved out by June 15th.  I am trying very hard to continue to lose weight, and will hopefully be able to get back into a good workout routine in the next few weeks as things hopefully calm, but usually when one things is settled another comes up!!  I have to be able to tell myself though that I have a FULL life and as much as sometimes I wish it was more boring, I am MAKING time for things that are positive to be able to take the negative!  Makes me super busy, but in the end helps balance it all!!

Thank you all for the continued thoughts and prayers.  I will try to  keep updating as I know many would like to know, but don't always want to ask me! 

I supose this is a bit long over due...
      We try very hard to just keep things as normal as possible for everyone, however some new things or I supose the best way to put it is a change in things. 
     Josh has become very active in the sportsman club near our house which is good and gives him something to do and other people to talk to.  He does watch the boys 3 days a week and takes Emily to and from school.  He has been asking his doctors for a long time to wean him off his pain meds because he hates how he feels on them, he would rather deal with the pain.  His doctors have not been too accepting of his want to be off his meds.  He is still have seizures and the guess is they are deep brain seizures because he will get pain in his groin before it completely over takes him and according to the neurologist, that's a sign of deep brain seizures...... BUT who really knows!
     This fall he ended up in the hospital because of rapid onset blindess.  He spent 4 or 5 days in the hospital (I think, my memory is not the greatest with all this anymore) and was diagnosed with cluster headaches.  He did follow up with a neuro-opthamologist who was very concerned about his eyes and suggested his brain may be pushing on his optic nerves.  He was prescribed oxygen to help with the cluster headaches and it does help at times.  He continues to have trouble with his eyes; double vision, vision loss, blurred vision.  His neurologist is at a loss.......
     Last year we noticed some hard lumps all over his body and he was supposed to have them removed/ or biopsied, but it never happened.  The conclusion was made that his lymphnodes are swelling and turning hard and he needed to follow up...... He never did.  His family doctor sent him to an Infectious disease doctor who is now sending him for multiple tests and he will be getting a full GI worked since he is also passing a lot of blood at times.  The lymphnodes are certainly causing trouble because last week he had severe pain in both arms, the veins in his arms buldged and both arms became rock hard.  When that finally passed he didn't have use of his arms for many hours.  So what's going on??  We really don't know, and it doesn't seem like anyone else knows either.  The infectious disease doctor ranked her choices for posibilities: 1. a virus of some kind compromising his immune system, 2. cancer, or 3 bacterial infection of some kind.
     So needless to say things have not really calmed down around here.  I am still working on my PhD and will be finishing up the school year soon and will be going to Florida for a conference in June with a few other teachers.  Josh and the kids will be staying home without me for 4 days!  Emily is loving school and will be in kindergarten next year at my school.  The boys are getting big and loud!!  :-)

Thank you to all of you who have listened and continue to listen to me complain and get all this off my chest.  I will update again if/when I get information on what's going on!

3 years post surgery

I can't believe it's been 3 years since Josh had his surgery. By the statements of most of his doctors at the time he should have been back to work and funtioning fairly normal by this time. Ha! Wouldn't that be nice... I know he wishes he could be back to work.

As I was typing Josh just lost the last 20 mintutes. I am pretty sure he just had a seizure different from normal. He had a hard time using the right words for things. He called his pillow his pills, and his blanket, his bucket. He also gasped for air a few times and told me his throat was not working right. He remembers nothing of it, and just asked me if he fell asleep. So back to normal is far from our reality.

Just a few weeks ago Josh was admitted to the hospital for rapid onset blindness. His neurologist diagnosed him with having Thunder Clap headache/Cluster headaches. Josh was taking migraine medication that only made things worse. After about a week in the hospital his vision came back to about 80-90 percent. He continues to have seizures here at home and lately they have been bad enough for him to lose his vision again, but it does slowly come back.

His neurologist is great with him but at the same time I think he feels a bit lost on where to go at this point. Things are not improving, they only seem to be getting worse. He is sending him to a Neuro Opthomologist to see what that doctor says.

Josh has also been having trouble with his liver. He knows it is enlarged and there are issues there. Who knows where we are going there? If it's not one thing it's another. We try very hard to just take one thing at a time, the problem is we want to take a break so many times that both Josh and I ignore things at times. It's all so draining.

Josh still walks with a cane and many times it's not enough but he's a "tough guy", and tries to just get by. He is struggling with trying to feel useful for the family and listening to his body. When he ignores how he feels, it usually does not work out well for anyone. He has been trying to start a buisness and has done some sales, but over the last month it's been very difficuly for him to do much of anything. His had to miss his last gun and knife show because he was in the hospital.

We continue to persue the military compensatioin for him. We do know a lot of this can be linked back to poisons he was exposed to in utero and after birth while living on Marine Corps base. The military does NOT make it easy though. We are mainly looking for the medical coverage for him because his medication alone is crazy expensive, however I am very lucky that my insurance is as good as it is!

I hear a lot from the people around me and those I work with how they are amazed at how I do it all. I don't. I don't have things completely together, and my house is an unbelievable mess, but my kids are happy and we are doing what we need to do. This is our life whether we like it or not. I can't spend time dwelling on the things I can't change, at the same time that doens't mean I don't get down and frustrated and tired with it all. I do struggle, but as long as my kids are taken care of and happy and things are as normal as I can make it for them we will be fine.

Emily is in Young 4's this year. She goes to school all day Monday through Thursday. She loves it and frequently tells us it's not long enough!! Her teacher is a great teacher too!!
Billy is a very stong willed little boy! He will be 3 in February and can be such and angel and a super big helper and then 5 minutes later he can be screaming, yelling, throwing a fit, and showing those terrifically terrible 3's coming soon! We have been working hard on potty training and he can do it, but frequently just doens't want to.
Kianan is getting so big, and is such a ham!! He is a big smiley kid who loves to try and make other laugh. He's been a big cuddler lately too, and I will never complain about that!!

I am working on my PhD in Early Childhood Education. It is something I always wanted to do, and jumped in with two feet starting in June. I am about to finish my 4th class. 16 more to go and I will have my degree. I am doing it completly online and it's wonderful!! Ideally I would like to get into research for early childhood and help change some of the policies and increase the availability and appropriatness of preschool programs!!

As for us as a whole we are surviving. The kids are VERY happy and to me that is the most important thing. Sorry to those who have not seen or talked to me in awhile/long time I don't get out and have much free time often. I appreciate the kind thoughts and all the prayers!! Love to everyone!!

New direction....

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!!

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!!

Latest......

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.