The last week has not been extremely 'stellar' by any means-- again! I have definitely been trying to NOT eat my young ... ☺
With the BI conference coming up on us quickly, Samuel is now claiming to not want to go. So I said he could just go to the one day on Tuesday so he could make it to the banquet and be able to make some connections with other survivors. He readily agreed but now is baulking as football practice starts on said Tuesday and that is fitting for uniforms and such then. Now he not wanting to go AT ALL.
So do I allow him to stay in school and go to football or do I have him go (trying to get football fitting the day before-- if possible) so that he can take some ownership of his injury... I don't want to force him but then again, if everything were always left up to a teen life would be nothing further than pizza, video games, FB and texting.
**sigh**
I want him to WANT to go. He has admitted to getting a lot out of his meetings at the groups we go to in Dauphin and Brandon-- and at first he didn't want to go there either...
I am praying that he will make a sound decision and I have been praying that God will help me to make the right on this too.
**sigh** being the parent sucks sometimes most times -- these days anyway.
Not all issues in our house revolve around BI's. Some of them are because of other things. I had taken Josh into Winnipeg on Tues. for an appt. involving his tailbone (this is 2 years after he had broken it). It looks like I have to take him in (when a date is set) to have a procedure done to 'fix' the tailbone. It is not healing but then how can it when your 6'2" teen will NOT use a rubber OR pillow doughnut to sit on?! Then you have to listen to him complain about the pain in his 'butt' because of the non-use!? ( I am getting gray hairs as I type over this one!)
Then lets add another 12yr old boy AND a 10yr old girl -- both at the cusp of puberty!!!!!!!!!! ARGGGGGGGGGHHHHHHHH
It is seeming that my days are filled with bouts of crying for attention, crying out of frustration, crying from fear of losing my mind....
**sigh**
motherhood is grand....
On a 'brighter' note... the Neepawa Press article on sam came out yesterday. I had forgotten all about it! Seriously! When I picked up the paper last night -- there was a small picture of Sam on the top header! He was a FULL PAGE story on page 3!!! Another keeper for his memory book. I hope that people will read it and maybe think, ask, research about ABI/TBI's and become more educated. (if you are stopping by my blog here because of the article in the paper-- please say 'Hi'! I love to get that 'ding' from my email that says I have a comment to approve!☺)Sam's story followed right after the story about the man in Neepawa that was murdered on the weekend-- shot in the head. So maybe it will work as a reminder that not all people who have severe injuries are all fatal?!
I will post the article when I get it. The paper said that they would send me the .pdf file of it so I could post it here for those of my friends and family who couldn't read it via the paper!
Thursday, April 15, 2010
Friday, April 9, 2010
learning curve...
okay I have been working on getting this blog to be more us and not just some generic run of the mill blog. Somethings that screams ginter!... okay maybe not screams but more like who we are.
And I am getting nowhere! I made a slide file so I could put in the side column but I cant make it work! I made a header for the blog with my own graphics in PSElements and I cant make it work. I thought I had someone to help me with this but apparently he has bailed on me... so I am on my own-- grrrrrrrr. So please bare with me as I am learning this whole wordpress thing. OR if someone else is out there reading and knows how to help me-- I am always open to learning via some help! I think I might like to eventually spend some money on this and buy my own domain(not sure if that is the right words...) but not right now.
Sam has had a few very late nights this week (TBI mtg on wed, cadets on Thurs and tonight will be youth group) and it is all starting to show. tomorrow the cadets are supposed to have a sports day but we will have to see if he is able to handle it. I can see a fatigue break down on our horizon if we dont get him resting.
Sometime this morning I am supposed to get a phone call from one of the local papers for an interview about Sam. They want to put some stuff about the TBI conference and use Sam as a story to go with it. (that is what I gathered from talking with Darren at the paper) Yesterday Darren picked up Sam from school at noon and took him out to have some photos done for the article-- I can't wait to see them! I will post the story when it is done for all to read!
And I am getting nowhere! I made a slide file so I could put in the side column but I cant make it work! I made a header for the blog with my own graphics in PSElements and I cant make it work. I thought I had someone to help me with this but apparently he has bailed on me... so I am on my own-- grrrrrrrr. So please bare with me as I am learning this whole wordpress thing. OR if someone else is out there reading and knows how to help me-- I am always open to learning via some help! I think I might like to eventually spend some money on this and buy my own domain(not sure if that is the right words...) but not right now.
Sam has had a few very late nights this week (TBI mtg on wed, cadets on Thurs and tonight will be youth group) and it is all starting to show. tomorrow the cadets are supposed to have a sports day but we will have to see if he is able to handle it. I can see a fatigue break down on our horizon if we dont get him resting.
Sometime this morning I am supposed to get a phone call from one of the local papers for an interview about Sam. They want to put some stuff about the TBI conference and use Sam as a story to go with it. (that is what I gathered from talking with Darren at the paper) Yesterday Darren picked up Sam from school at noon and took him out to have some photos done for the article-- I can't wait to see them! I will post the story when it is done for all to read!
Monday, April 5, 2010
ahhhhh.....**sigh**
Hear that!? yep... quiet, peace and quiet -- well almost. After almost 2 weeks of having kids at my side (sickness the week before March Break and then the actual March Break) my house is finally my own domain again! Well, almost... Dennis is home and will be from now on. He has applied for a leave of absence at the CFIA (Canadian Food Inspection Agency) and will be working for my mom on the farm here (here being our house) on the cow calf operation. He doesn't officially start until after the 9th of April, but he had some time off coming to him for work so he took it. We will be spending time this week doing yard work, getting sheep ready for spring and hopefully a few finishing touches with the house renos.
Dennis being home now more will mean a new learning curve for us all again. He will be here in the morning with the kids as they get ready for school, he will be home (or at least near by) when they get home from school. He has already informed me that if it can be worked out he will drive the kids to the bus in the mornings for me(sigh... this is why I ♥ him!) The kids are all fairly excited about this.
This also means that maybe my mornings with sam will not be as ARRRGGGGGGGGHHHHHH as there will be 2 of us to work with him! The last 2 weeks have been so draining for me. (when I think how tired both physically and emotionally for me I can't imagine how they are for Sam) He has been fairly sick with first the flu for 4.5 days and then it turned to a cold into his chest. So he was clingy, a bit whiney and just over all in a bit of a regressed state. Even tho we work hard to keep the kids in a routine over the holidays, it is still not our usual routine and it seems to stress him out after a few days. So I am very happy that today is back to school!!!!
This will be the first week for Sam to go ALL 5 days this week too. He will go Mon-Fri and then next week he will take the Wed. off in hopes of getting him back into full-time school. We are supposed to try it (crossing our fingers here) and if it is needed for a day off we will just take it-- but it will have to be a good reason to take a day before next Wed. Sam's inspiration for 5 day school week is football season. He has to be back to full-time before the spring league starts so he can play. (our rules not the school). He has been working out to work toward this and as soon as the weather co-operates he and Josh will be out running with Dennis in the mornings or after school to start training.
I have been busy trying to get the TBI conference 'out there' in the public but it seems that (I hate to say this) if it isn't cancer related people just aren't interested! No matter the information and statistics that you give people they just don't care. I had given my info for the conference to our local papers but neither of them have run the PSA's that I have seen! I will be contacting them today to see what they are planning to do with them-- as there may be people wanting to REGISTER for this conference and need to know about it BEFORE it is over! I am getting to a point where it feels like I need to be more aggressive about this, but I worry that if I get to 'forward' I will get emotional about it all and then look like an idiot as I try to advocate for something while crying my heart out...
Dennis being home now more will mean a new learning curve for us all again. He will be here in the morning with the kids as they get ready for school, he will be home (or at least near by) when they get home from school. He has already informed me that if it can be worked out he will drive the kids to the bus in the mornings for me(sigh... this is why I ♥ him!) The kids are all fairly excited about this.
This also means that maybe my mornings with sam will not be as ARRRGGGGGGGGHHHHHH as there will be 2 of us to work with him! The last 2 weeks have been so draining for me. (when I think how tired both physically and emotionally for me I can't imagine how they are for Sam) He has been fairly sick with first the flu for 4.5 days and then it turned to a cold into his chest. So he was clingy, a bit whiney and just over all in a bit of a regressed state. Even tho we work hard to keep the kids in a routine over the holidays, it is still not our usual routine and it seems to stress him out after a few days. So I am very happy that today is back to school!!!!
This will be the first week for Sam to go ALL 5 days this week too. He will go Mon-Fri and then next week he will take the Wed. off in hopes of getting him back into full-time school. We are supposed to try it (crossing our fingers here) and if it is needed for a day off we will just take it-- but it will have to be a good reason to take a day before next Wed. Sam's inspiration for 5 day school week is football season. He has to be back to full-time before the spring league starts so he can play. (our rules not the school). He has been working out to work toward this and as soon as the weather co-operates he and Josh will be out running with Dennis in the mornings or after school to start training.
I have been busy trying to get the TBI conference 'out there' in the public but it seems that (I hate to say this) if it isn't cancer related people just aren't interested! No matter the information and statistics that you give people they just don't care. I had given my info for the conference to our local papers but neither of them have run the PSA's that I have seen! I will be contacting them today to see what they are planning to do with them-- as there may be people wanting to REGISTER for this conference and need to know about it BEFORE it is over! I am getting to a point where it feels like I need to be more aggressive about this, but I worry that if I get to 'forward' I will get emotional about it all and then look like an idiot as I try to advocate for something while crying my heart out...
Wednesday, March 24, 2010
One day at a time...
wasnt that a TV show!? (LOL for those you who really know me... I love 70's and 80's sitcoms)☺
but that is our motto in this house!
As I sit here typing this out, our Sammi is upstairs sleeping in our bed (we have a tv in our room) with a fever, sick stomach and vertigo. It is his normal day for staying home but today he is sick. I have had him up and in a cool shower, gave him Tylenol and sent him back to bed. He white as a sheet and looks horrible. I always get worried when he has a fever since we have to be sure the fever doesn't go to high and trigger seizures. (never have had one yet but the doctors still tell us to be very careful with them).
Last week on Tuesday he came home from school fatigued. White, slightly limping and his left side ever so slightly drooping. It took until Monday for him to 'get back to normal'. Then he came home last night feeling sick and just blah. So i wonder if it wasnt starting last week and finally hitting him now... who knows.
Sam and I had a great talk last week and he has decided to have the plastic surgery done on his head. This will be a metal plate put in to cover the 'hole' where the bullet entered. I was shocked when he told he that this was what he wanted to do AND that he had been thinking about it for quite a while now. He says he is bothered by the way people will watch his head and not look him in the eye when they talk to him (usually this means his friends). Around the entry wound area is not only a long scar but the 'hole' and a person can see his heart beating there and it will pulse or bulge when he is stressed or there is pressure from straining. We had told Sam (from the beginning) that this would be a decision up to him alone. It is him that would have to live with the scar, the 'hole' and whatever else is involved, and we have never brought it up again. And his reasons for wanting to do it make sense to me. He is a teen and wants to not be different. But there is more to it... kids are also asking to touch it. This is one thing that distresses me! Sam has said that he didn't mind at first but now it is getting to be too much. So we have talked about it, and I have called our TBI co-ordinator (Gail) and am waiting for her to call me back to see how we go about getting a consult and with who.
Sam lately has been having episodes of vertigo. He will get dizzy when sitting then standing (which is normal for a lot of people) but he will also get dizzy when walking, standing AND while sitting! So I hope to ask Gail about this too. I know it is normal for a lot of survivors but it doesn't hurt to just double-check. We have told Sam that he needs to be aware of when it happens and what happens b4 he feels the full effect of it so he can know while riding a bike or climbing up a ladder, etc. to get himself in a safe position.
He is still having stomach issues to the last while. Meaning his stomach will physically hurt, then he tends to lose his appetite. I havent found much info on this so it will be another question for Gail.
Once again our lives are taking a turn and things will be very different around our house, but for now I will leave it for a future date to talk about! BUT we did sell our house and as of tomorrow (Mar 25) it will no longer be our house! YAY!!! Thank you Lord!
My blog will be under construction the next little while as I get used to the new formats and get the right background and widgets on here. I need to transfer over the info from the old blog once all that is in place! If there are any ideas for here please let me know!
but that is our motto in this house!
As I sit here typing this out, our Sammi is upstairs sleeping in our bed (we have a tv in our room) with a fever, sick stomach and vertigo. It is his normal day for staying home but today he is sick. I have had him up and in a cool shower, gave him Tylenol and sent him back to bed. He white as a sheet and looks horrible. I always get worried when he has a fever since we have to be sure the fever doesn't go to high and trigger seizures. (never have had one yet but the doctors still tell us to be very careful with them).
Last week on Tuesday he came home from school fatigued. White, slightly limping and his left side ever so slightly drooping. It took until Monday for him to 'get back to normal'. Then he came home last night feeling sick and just blah. So i wonder if it wasnt starting last week and finally hitting him now... who knows.
Sam and I had a great talk last week and he has decided to have the plastic surgery done on his head. This will be a metal plate put in to cover the 'hole' where the bullet entered. I was shocked when he told he that this was what he wanted to do AND that he had been thinking about it for quite a while now. He says he is bothered by the way people will watch his head and not look him in the eye when they talk to him (usually this means his friends). Around the entry wound area is not only a long scar but the 'hole' and a person can see his heart beating there and it will pulse or bulge when he is stressed or there is pressure from straining. We had told Sam (from the beginning) that this would be a decision up to him alone. It is him that would have to live with the scar, the 'hole' and whatever else is involved, and we have never brought it up again. And his reasons for wanting to do it make sense to me. He is a teen and wants to not be different. But there is more to it... kids are also asking to touch it. This is one thing that distresses me! Sam has said that he didn't mind at first but now it is getting to be too much. So we have talked about it, and I have called our TBI co-ordinator (Gail) and am waiting for her to call me back to see how we go about getting a consult and with who.
Sam lately has been having episodes of vertigo. He will get dizzy when sitting then standing (which is normal for a lot of people) but he will also get dizzy when walking, standing AND while sitting! So I hope to ask Gail about this too. I know it is normal for a lot of survivors but it doesn't hurt to just double-check. We have told Sam that he needs to be aware of when it happens and what happens b4 he feels the full effect of it so he can know while riding a bike or climbing up a ladder, etc. to get himself in a safe position.
He is still having stomach issues to the last while. Meaning his stomach will physically hurt, then he tends to lose his appetite. I havent found much info on this so it will be another question for Gail.
Once again our lives are taking a turn and things will be very different around our house, but for now I will leave it for a future date to talk about! BUT we did sell our house and as of tomorrow (Mar 25) it will no longer be our house! YAY!!! Thank you Lord!
My blog will be under construction the next little while as I get used to the new formats and get the right background and widgets on here. I need to transfer over the info from the old blog once all that is in place! If there are any ideas for here please let me know!
Tuesday, March 16, 2010
Boy oh Boy! When you go to bed at 11 and are up at 5 the night just doesn't seem long enough!! Dennis and I took Sam to the Brandon meeting last night and had a good talk on the way home with him. He really enjoys going and learning that he isnt alone in this-- that there are others out there that 'get him'! There was a discussion about the P.A.R.T.Y. (Prevention for Alcohol Risk-Related Trauma in Youth) (please click on link to see the idea behind this AWESOME program!!!!) and that it is going to be in Brandon and one of the caregivers thought that it would be awesome for Sam to be one of the survivors to speak to the teens of what it is like to survive AND live with a TBI since he is closer to their age. We had talked to him about it but at this time it is too early for him to talk about it. He needs to learn to live with it himself before he shares his story to strangers. But I asked him to think about it for something to maybe do in the future.
We only have 2 Wednesdays left of Sam being at home!! YAY we are both excited about this!! Sam is really tired of being at home (or maybe just tired of me or not seeing his girlfriend... lol who knows-- but I am willing to put money on both!☺) I have spent more time with him than probably all the other kids...so it is coming to be a time to start making more them. I have always tried to spend time with each of them each week just one on one, but lately with Sam and the moving to the new place and Dennis being in town with who ever had a sport or activity (which had me here doing battle with homework, the house and chores) I was tired both physically and emotionally. I have to be honest here and say that there have been times where I would tell a child I was too tired to play a board game, read a book or even just talk. (man what a way to win bad mommy of the year!) But now it is time to get back on track and get back to basics with all the kids individually and as a family, for some fun stuff!
On a quick side note of Praise... after I posted on the blog yesterday (about an hour and a half later) I got 3 (yes that is THREE) emails from teachers! When I sent this email out this week, I asked for school work and I commented how we were grateful for their help with Sam and that we really notice a difference in him and his work when we are able to keep him organized! So whether the 'thanks' was it or whatever, I was so happy to see them hit my inbox!
We only have 2 Wednesdays left of Sam being at home!! YAY we are both excited about this!! Sam is really tired of being at home (or maybe just tired of me or not seeing his girlfriend... lol who knows-- but I am willing to put money on both!☺) I have spent more time with him than probably all the other kids...so it is coming to be a time to start making more them. I have always tried to spend time with each of them each week just one on one, but lately with Sam and the moving to the new place and Dennis being in town with who ever had a sport or activity (which had me here doing battle with homework, the house and chores) I was tired both physically and emotionally. I have to be honest here and say that there have been times where I would tell a child I was too tired to play a board game, read a book or even just talk. (man what a way to win bad mommy of the year!) But now it is time to get back on track and get back to basics with all the kids individually and as a family, for some fun stuff!
On a quick side note of Praise... after I posted on the blog yesterday (about an hour and a half later) I got 3 (yes that is THREE) emails from teachers! When I sent this email out this week, I asked for school work and I commented how we were grateful for their help with Sam and that we really notice a difference in him and his work when we are able to keep him organized! So whether the 'thanks' was it or whatever, I was so happy to see them hit my inbox!
Monday, March 15, 2010
New Address
Yes, I have moved the blog! I was not happy with what I could do at our 'old' place and I like the way that WordPress gives me more options! (just what I need!)
Well I am soooooooooooo happy to announce that our house in Neepawa is SOLD! YAY! Thank you God for sending the right people to buy our home at the time You felt was best! (I am in that hindsight frame of mind right now... ☺) So in a way the new address is for more than the blog!
Tonight we are off to another TBI meeting. This is the one in Brandon that Sam likes, but the real reason for us going is so I can share the information on the TBI Conference in April. We will take Sam to these meetings once in a while but due to distance and the fact that we feel that he will get more out of the Dauphin group once he gets more comfortable with them we will go to the Dauphin meetings more regular.
I have busy, busy again last week getting things in order for what I need to do to help with the awareness for the conference. I have a few people in mind to talk to and see about things, I have many posters made to put up, brochures to hand out and people to talk too! I can't wait til Thursday when I am going to town to do this! (i have spoken to most of these people already ... but just getting out and face to face spreading the word of TBI awareness... thrilling.
I sent out my emails this morning too, to teachers about Sam's weekly school work and so far no replies to the email. I was told by the school division to send the emails to the teachers, that they would reply fairly quickly. I know it is only Monday afternoon but I sent out emails last Monday and really only got one reply. I put a read receipt on the emails and very few of them have come back either\(or an acknowledgement that they read the email!!!)... So I will wait and see this week, then I will go to the next step (not too sure what all that is right now tho)
Well I am soooooooooooo happy to announce that our house in Neepawa is SOLD! YAY! Thank you God for sending the right people to buy our home at the time You felt was best! (I am in that hindsight frame of mind right now... ☺) So in a way the new address is for more than the blog!
Tonight we are off to another TBI meeting. This is the one in Brandon that Sam likes, but the real reason for us going is so I can share the information on the TBI Conference in April. We will take Sam to these meetings once in a while but due to distance and the fact that we feel that he will get more out of the Dauphin group once he gets more comfortable with them we will go to the Dauphin meetings more regular.
I have busy, busy again last week getting things in order for what I need to do to help with the awareness for the conference. I have a few people in mind to talk to and see about things, I have many posters made to put up, brochures to hand out and people to talk too! I can't wait til Thursday when I am going to town to do this! (i have spoken to most of these people already ... but just getting out and face to face spreading the word of TBI awareness... thrilling.
I sent out my emails this morning too, to teachers about Sam's weekly school work and so far no replies to the email. I was told by the school division to send the emails to the teachers, that they would reply fairly quickly. I know it is only Monday afternoon but I sent out emails last Monday and really only got one reply. I put a read receipt on the emails and very few of them have come back either\(or an acknowledgement that they read the email!!!)... So I will wait and see this week, then I will go to the next step (not too sure what all that is right now tho)
Friday, March 12, 2010
wishing I could take these mitts off...
I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today. As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!" now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
wishing I could take these mitts off...
I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today. As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!" now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND b.) be going home.
I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?
The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him). Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with. Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are 3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).
Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)
I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...
Thursday, March 11, 2010
3 men and baby?!? um no just me
I have been wanting to post this for a while now but due to other things happening (both blessings and not so much blessings) I seemed to put it off more and more. But today I thought I would sit and spend the next day or two getting it all (or as much of it as I can) out and on here.
My Sammi.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
So please indulge for me for a bit while I tell you about 3 (of the 5) men in my life that are my blessings and my cause for many tears, of both happiness and frustration!
First is Sam.
My Sammi. He was my biggest baby at 8lb 13oz and from there on was at the low end of the birth rate scales -- now being my 'smallest' (extremely lean and thin at 5'8" and just barely now 123lbs). He was my quiet baby that would grunt softly for feeding times and he loved to snuggle with me. He was 'my' boy just as Josh was 'dad's' boy...
As you know this blog was started because of an accident that he had on July 29/08 with a .22 calibre rifle that accidentally discharged and struck him in the head -- resulting in a TBI (Traumatic Brain Injury). At this moment in life ( and I am SURE forever) he is my constant reminder that God DOES perform miracles and we should look for them everyday but he is also a reminder that God allows things to happen so He can work thru you, so that other things (maybe another miracle) can happen to someone else (or even yourself!)
Our home usually has daily drama that has occured from either a.) a TBI moment/issue/backlash b.) teen angst or c.) cuz I truely believe God has a wonderful (and possibly warped) sense of humour! I am sure this is the same with every other house in Canada, USA and the world, but when it is happening in your kitchen -- and you are in the centre of it-- nothing else is happening anywhere else in the universe but there!
Sam has been working hard to not only reach his goals but he usually surpasses them by huge leaps and bounds and in a time that is unbelievable to not only us (as parents) but to the doctors as well. All you really need to do is go back and read a few posts from last year to know what I am talking about here... heck go back and read them all to get the full affect of the whole situation!
I wanted to make this post tho to also introduce you to the other 2 men in my life that are not only challenges but huge incredible blessings from God. These are men who yes, do challenge my patience, my sanity and my creativity...
First is my dad.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best. On Dec 16, 1995 Sam was born in Neepawa, Manitoba, Papa (my dad) was called to announce the birth(he lived in Bruderheim,Alberta), 4 days later both Sam and I were allowed to go home and on Dec. 22 somewhere around 3AM there was a knock on our door and there stood my dad. Smiling, tired but smiling and wanting to see his grandsons, Josh and Sam. We spent a great Christmas with him and when he left for home on the 27th early in the morning he gave me his favorite jean jacket, kissed and hugged me goodbye and promised to call when he got home. He did and he and I spoke on the phone at least 2-3 times a week after that until Aug long weekend 1996. (I still have the jean jacket ☺)
That was the weekend my mom was remarried to Dwayne and my dad was beaten up by his almost exwife's boyfriend with some help from her too. I wont go into the gory details surrounding the beating but it is enough to say that my dad is now a limited mobility quadripeligic with severe brain damage that has him more like a 7-8 yr old most days (on a 'good' day). I treasure that Christmas with my dad. It was an amazing gift from God, something that I will always hold dear in my heart.
Now my dad has more off days than on it seems. He will talk more with Dennis or the kids than with me, but maybe that is because our last conversation we had had (on the saturday morning of my mom's wedding)ended in a disagreement...I dont know. We are never quite sure what is going on in his head so we are very cautious with what we tell him (he doesnt know about Sam's accident) in case in his more lucid moments he worries and frets about things.
He almost ALWAYS know Dennis and the kids, my mom and his siblings but sometimes I am a sibling or someone totally random. He was at Dennis' wedding but not mine! (Dennis assures me I am his first wife☺) I had thot maybe my dad would confuse me with my mom (Debbi) since we look alot alike and call my daughter Hannah 'Jodi' (since we also look alot alike!) but he has NEVER made that mistake. (Isaac and Hannah were both born after his TBI).
There are many issues that we regularily deal with, with my dad but its all good. He is in a wonderful PCH that has great nurses and aids and other staff supports. We are able to see him more regular now that he has moved here with us to Manitoba (he was living in Alberta with his gf (who looked after his care) up until about 6 years ago).
When we ask my dad to sing songs with us he can do it without thinking but ask him what he did today and sit back for a giggle cuz some of his days are great! Once he was with my granddad buying a new car off the showroom floor! (I checked this story out and it never happened) Another time was when he moved from the old lodge to the new facility he thought he had moved to Gravenhurst, Ontario (this is where he is from) and he was determined that he did... so we let him think it, since the next day he knew where he was (in Neepawa). Somedays he is all smiles and kisses for me and then there are the days where he is glaring and telling me to (insert swear here) off... he tries to bite hands (a defense mechanism for him), he laughs at jokes, he will ask for beer... he will sleep thru a visit and snore to his hearts content...that is my dad now.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness. 6years ago I went back to college to get my Educational Assistant Dipolma and learned alot about issues with children I would have to learn to work with in a school setting. One of our papers (the major paper) was to choose an 'issue', I chose TBI as it was prevelant to my life and I wanted to know more about what it was doing to my dad and how to use tools to help him and others in my daily life and work. As with most term papers, you get immersed in it and things that were foggy and fuzzy to begin with start to take on more shape and that was when I realized that Dennis had a TBI. Dennis was also going to college to get his Agribusiness and passed the course not only with flying colours but with distinction, and 3 scholarships and cash awards. He also won an award for his business plan that he developed for our our sheep farm! So you see where I am going with the high functioning TBI...neither Sam or Dennis' intellect was dimished due to their TBI-- just thier patterns of thinking, organizing and processing information.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
3 men and baby?!? um no just me
I have been wanting to post this for a while now but due to other things happening (both blessings and not so much blessings) I seemed to put it off more and more. But today I thought I would sit and spend the next day or two getting it all (or as much of it as I can) out and on here.
My Sammi.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
So please indulge for me for a bit while I tell you about 3 (of the 5) men in my life that are my blessings and my cause for many tears, of both happiness and frustration!
First is Sam.
My Sammi. He was my biggest baby at 8lb 13oz and from there on was at the low end of the birth rate scales -- now being my 'smallest' (extremely lean and thin at 5'8" and just barely now 123lbs). He was my quiet baby that would grunt softly for feeding times and he loved to snuggle with me. He was 'my' boy just as Josh was 'dad's' boy...
As you know this blog was started because of an accident that he had on July 29/08 with a .22 calibre rifle that accidentally discharged and struck him in the head -- resulting in a TBI (Traumatic Brain Injury). At this moment in life ( and I am SURE forever) he is my constant reminder that God DOES perform miracles and we should look for them everyday but he is also a reminder that God allows things to happen so He can work thru you, so that other things (maybe another miracle) can happen to someone else (or even yourself!)
Our home usually has daily drama that has occured from either a.) a TBI moment/issue/backlash b.) teen angst or c.) cuz I truely believe God has a wonderful (and possibly warped) sense of humour! I am sure this is the same with every other house in Canada, USA and the world, but when it is happening in your kitchen -- and you are in the centre of it-- nothing else is happening anywhere else in the universe but there!
Sam has been working hard to not only reach his goals but he usually surpasses them by huge leaps and bounds and in a time that is unbelievable to not only us (as parents) but to the doctors as well. All you really need to do is go back and read a few posts from last year to know what I am talking about here... heck go back and read them all to get the full affect of the whole situation!
I wanted to make this post tho to also introduce you to the other 2 men in my life that are not only challenges but huge incredible blessings from God. These are men who yes, do challenge my patience, my sanity and my creativity...
First is my dad.
He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best. On Dec 16, 1995 Sam was born in Neepawa, Manitoba, Papa (my dad) was called to announce the birth(he lived in Bruderheim,Alberta), 4 days later both Sam and I were allowed to go home and on Dec. 22 somewhere around 3AM there was a knock on our door and there stood my dad. Smiling, tired but smiling and wanting to see his grandsons, Josh and Sam. We spent a great Christmas with him and when he left for home on the 27th early in the morning he gave me his favorite jean jacket, kissed and hugged me goodbye and promised to call when he got home. He did and he and I spoke on the phone at least 2-3 times a week after that until Aug long weekend 1996. (I still have the jean jacket ☺)
That was the weekend my mom was remarried to Dwayne and my dad was beaten up by his almost exwife's boyfriend with some help from her too. I wont go into the gory details surrounding the beating but it is enough to say that my dad is now a limited mobility quadripeligic with severe brain damage that has him more like a 7-8 yr old most days (on a 'good' day). I treasure that Christmas with my dad. It was an amazing gift from God, something that I will always hold dear in my heart.
Now my dad has more off days than on it seems. He will talk more with Dennis or the kids than with me, but maybe that is because our last conversation we had had (on the saturday morning of my mom's wedding)ended in a disagreement...I dont know. We are never quite sure what is going on in his head so we are very cautious with what we tell him (he doesnt know about Sam's accident) in case in his more lucid moments he worries and frets about things.
He almost ALWAYS know Dennis and the kids, my mom and his siblings but sometimes I am a sibling or someone totally random. He was at Dennis' wedding but not mine! (Dennis assures me I am his first wife☺) I had thot maybe my dad would confuse me with my mom (Debbi) since we look alot alike and call my daughter Hannah 'Jodi' (since we also look alot alike!) but he has NEVER made that mistake. (Isaac and Hannah were both born after his TBI).
There are many issues that we regularily deal with, with my dad but its all good. He is in a wonderful PCH that has great nurses and aids and other staff supports. We are able to see him more regular now that he has moved here with us to Manitoba (he was living in Alberta with his gf (who looked after his care) up until about 6 years ago).
When we ask my dad to sing songs with us he can do it without thinking but ask him what he did today and sit back for a giggle cuz some of his days are great! Once he was with my granddad buying a new car off the showroom floor! (I checked this story out and it never happened) Another time was when he moved from the old lodge to the new facility he thought he had moved to Gravenhurst, Ontario (this is where he is from) and he was determined that he did... so we let him think it, since the next day he knew where he was (in Neepawa). Somedays he is all smiles and kisses for me and then there are the days where he is glaring and telling me to (insert swear here) off... he tries to bite hands (a defense mechanism for him), he laughs at jokes, he will ask for beer... he will sleep thru a visit and snore to his hearts content...that is my dad now.
The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!
My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%) things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness. 6years ago I went back to college to get my Educational Assistant Dipolma and learned alot about issues with children I would have to learn to work with in a school setting. One of our papers (the major paper) was to choose an 'issue', I chose TBI as it was prevelant to my life and I wanted to know more about what it was doing to my dad and how to use tools to help him and others in my daily life and work. As with most term papers, you get immersed in it and things that were foggy and fuzzy to begin with start to take on more shape and that was when I realized that Dennis had a TBI. Dennis was also going to college to get his Agribusiness and passed the course not only with flying colours but with distinction, and 3 scholarships and cash awards. He also won an award for his business plan that he developed for our our sheep farm! So you see where I am going with the high functioning TBI...neither Sam or Dennis' intellect was dimished due to their TBI-- just thier patterns of thinking, organizing and processing information.
TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.
Wednesday, March 10, 2010
Crazy is as crazy does...
I want to cry...
I want to throw a fit...
I want to throw SOMETHING ...
then I want to cry some more...
We met with 2 of Sam's teachers last night and that is how I felt when we left the school.
One teacher seemed to 'get it' to a point with what we were telling her- Sam just needs some extra help with organizing his work, to stay on task and to get work done. He DOES NOT need to have things made easier for him (meaning he doesnt need his work 'dumbed down' for him -- for lack of better terminology). The other teacher I am not sure understood what we were trying to do for Sam. I felt like he thought we were babying him -- in other words there is nothing wrong with him 'really'. The teacher commented that if it were his child he "wouldnt think twice about having him at school 5 days a week and give him a 'spare' once a day'. I wanted to explain to him (to 'dumb it down' for him) that Sam needs the one day at home for REST and one period a day AT SCHOOL is not rest for his brain. For one, when he is behind in something teachers would take that 'spare' and use it for him to get caught up (no rest...) or, two,he would use it to play on computers or his iPod (no rest...) since he IS still a teenager!When Sam is at home on Wed. he is doing nothing but laying on the couch to rest his brain! (There is no computers, video games or other things that will cause his brain to work over time!) This is a teacher that has just gotten Sam in is class room (new semester change) and I am sure hasnt read any of the literature that I gave the teachers. And we ARE working on having Sam back to school 5 days a week in April and take one Wed. off every 2 weeks (this was on advice from the NEUROLOGIST!) I also had to explain that this brain injury could take YEARS to heal-- it is not 'better' just because the scar is healed up on his head.
We did finally settle on some things to help Sam with the classes. In Social Studies, he will work on daily work and have open book tests (so there is no stress about studying for him). In Math he will work on his booklets and some work in the text books and he will be checking in with the teachers when things get confusing.
It was very hard explaining Sam's behaviour with him there too. I had to say things that were embarassing for him to have me say to the teachers but it needed to be said so that they could understand... I hope and pray. I had to tell them about his reverting to immature behaviours when he is overwhelmed or when his sensory overload kicks in -- but I wonder if they got it or if I was making excuses for him. I honestly dont know if they get that he has a BRAIN INJURY!
I was trying to get across something that I have been telling people(not just teachers) since the beginning about organization in his brain and life and the other day I finally got how to explain it that HOPEFULLY people would get (and not always make me feel less with 'well he IS a teenager and that is normal' attitude) It was this: YES he is a teen with normal teen issues and YES most teens are not overly organized or together with school BUT the big difference is that eventually 95% (or so) will EVENTUALLY get it together! If Sam doesnt learn now how to do that his brain will never learn as it is still healing and needs to learn how to reroute his thought patterns NOW so that he can have those tools for later in life.
I did send some YouTube videos out to the teachers and the school division that had a lady with a TBI and she explains things in suc a way that I never could (she and her videos can be found HERE) Te hope had been for the teachers to watc the videos BEFORE we met with them but apparently the internet at the school is slow or something and they were unable to watch them but another teacher did manage to watch them and said that they helped to to understand what Sam (and us) must go thru! (wehavent met with this teacher yet--this semester) .
I wish people could understand that we are doing what we feel is best for Sam, that the doctors dont even know exactly what to do or how to deal with this as he is doing so much better than expected. So here I sit feeliong like I am going crazy with Sam and maybe I am not doing what is best for him. Maybe I am screwing it all up and making life worse for him, I dont know anymore! I feel so horrible to even THINK that maybe it would be easier if he were worse then at least people would SEE that there are issues. I once told a friend that I was actually jealous of her with her son (he had cancer) because people just took everything they were going thru at face value-- just that ... while we are fighting to get one or 2 people to understand the frustration that we go thru on a daily basis! People will accept things of people with diagnosis' that are more prevelant in the media or in thier lives than they will with ones that are seemingly less so-- if only they knew how "common" Brain injuries are!
After our meetings and other appts. we dropped Dennis off at his car (he had a meeting last night) and we drove home and let me tell you that was not a pleasant drive. Both Dennis and I could see the change in Sam as we were with the last teacher. His whole demeanor changed and I knew I was in for a night and once in the car so did the other kids. No sooner had we walked in the door of the house and it started. The other 3 kids knew Sam was in a mood so immediately they were on the defensive and that started a well versed production in our lives. Once everyone had chores done and dinner on the table I had it out with them and trying to get things back to a respectful level. It was 8.30 before things were 'right' with the house...
I think I need to get back to writing more frequently on here again. There is just too much to put into one post without feeling like I am rambling or babbling....
I had hoped for a different posting this week but apparently it will wait for another day.
I want to throw a fit...
I want to throw SOMETHING ...
then I want to cry some more...
We met with 2 of Sam's teachers last night and that is how I felt when we left the school.
One teacher seemed to 'get it' to a point with what we were telling her- Sam just needs some extra help with organizing his work, to stay on task and to get work done. He DOES NOT need to have things made easier for him (meaning he doesnt need his work 'dumbed down' for him -- for lack of better terminology). The other teacher I am not sure understood what we were trying to do for Sam. I felt like he thought we were babying him -- in other words there is nothing wrong with him 'really'. The teacher commented that if it were his child he "wouldnt think twice about having him at school 5 days a week and give him a 'spare' once a day'. I wanted to explain to him (to 'dumb it down' for him) that Sam needs the one day at home for REST and one period a day AT SCHOOL is not rest for his brain. For one, when he is behind in something teachers would take that 'spare' and use it for him to get caught up (no rest...) or, two,he would use it to play on computers or his iPod (no rest...) since he IS still a teenager!When Sam is at home on Wed. he is doing nothing but laying on the couch to rest his brain! (There is no computers, video games or other things that will cause his brain to work over time!) This is a teacher that has just gotten Sam in is class room (new semester change) and I am sure hasnt read any of the literature that I gave the teachers. And we ARE working on having Sam back to school 5 days a week in April and take one Wed. off every 2 weeks (this was on advice from the NEUROLOGIST!) I also had to explain that this brain injury could take YEARS to heal-- it is not 'better' just because the scar is healed up on his head.
We did finally settle on some things to help Sam with the classes. In Social Studies, he will work on daily work and have open book tests (so there is no stress about studying for him). In Math he will work on his booklets and some work in the text books and he will be checking in with the teachers when things get confusing.
It was very hard explaining Sam's behaviour with him there too. I had to say things that were embarassing for him to have me say to the teachers but it needed to be said so that they could understand... I hope and pray. I had to tell them about his reverting to immature behaviours when he is overwhelmed or when his sensory overload kicks in -- but I wonder if they got it or if I was making excuses for him. I honestly dont know if they get that he has a BRAIN INJURY!
I was trying to get across something that I have been telling people(not just teachers) since the beginning about organization in his brain and life and the other day I finally got how to explain it that HOPEFULLY people would get (and not always make me feel less with 'well he IS a teenager and that is normal' attitude) It was this: YES he is a teen with normal teen issues and YES most teens are not overly organized or together with school BUT the big difference is that eventually 95% (or so) will EVENTUALLY get it together! If Sam doesnt learn now how to do that his brain will never learn as it is still healing and needs to learn how to reroute his thought patterns NOW so that he can have those tools for later in life.
I did send some YouTube videos out to the teachers and the school division that had a lady with a TBI and she explains things in suc a way that I never could (she and her videos can be found HERE) Te hope had been for the teachers to watc the videos BEFORE we met with them but apparently the internet at the school is slow or something and they were unable to watch them but another teacher did manage to watch them and said that they helped to to understand what Sam (and us) must go thru! (wehavent met with this teacher yet--this semester) .
I wish people could understand that we are doing what we feel is best for Sam, that the doctors dont even know exactly what to do or how to deal with this as he is doing so much better than expected. So here I sit feeliong like I am going crazy with Sam and maybe I am not doing what is best for him. Maybe I am screwing it all up and making life worse for him, I dont know anymore! I feel so horrible to even THINK that maybe it would be easier if he were worse then at least people would SEE that there are issues. I once told a friend that I was actually jealous of her with her son (he had cancer) because people just took everything they were going thru at face value-- just that ... while we are fighting to get one or 2 people to understand the frustration that we go thru on a daily basis! People will accept things of people with diagnosis' that are more prevelant in the media or in thier lives than they will with ones that are seemingly less so-- if only they knew how "common" Brain injuries are!
After our meetings and other appts. we dropped Dennis off at his car (he had a meeting last night) and we drove home and let me tell you that was not a pleasant drive. Both Dennis and I could see the change in Sam as we were with the last teacher. His whole demeanor changed and I knew I was in for a night and once in the car so did the other kids. No sooner had we walked in the door of the house and it started. The other 3 kids knew Sam was in a mood so immediately they were on the defensive and that started a well versed production in our lives. Once everyone had chores done and dinner on the table I had it out with them and trying to get things back to a respectful level. It was 8.30 before things were 'right' with the house...
I think I need to get back to writing more frequently on here again. There is just too much to put into one post without feeling like I am rambling or babbling....
I had hoped for a different posting this week but apparently it will wait for another day.
Crazy is as crazy does...
I want to cry...
I want to throw a fit...
I want to throw SOMETHING ...
then I want to cry some more...
We met with 2 of Sam's teachers last night and that is how I felt when we left the school.
One teacher seemed to 'get it' to a point with what we were telling her- Sam just needs some extra help with organizing his work, to stay on task and to get work done. He DOES NOT need to have things made easier for him (meaning he doesnt need his work 'dumbed down' for him -- for lack of better terminology). The other teacher I am not sure understood what we were trying to do for Sam. I felt like he thought we were babying him -- in other words there is nothing wrong with him 'really'. The teacher commented that if it were his child he "wouldnt think twice about having him at school 5 days a week and give him a 'spare' once a day'. I wanted to explain to him (to 'dumb it down' for him) that Sam needs the one day at home for REST and one period a day AT SCHOOL is not rest for his brain. For one, when he is behind in something teachers would take that 'spare' and use it for him to get caught up (no rest...) or, two,he would use it to play on computers or his iPod (no rest...) since he IS still a teenager!When Sam is at home on Wed. he is doing nothing but laying on the couch to rest his brain! (There is no computers, video games or other things that will cause his brain to work over time!) This is a teacher that has just gotten Sam in is class room (new semester change) and I am sure hasnt read any of the literature that I gave the teachers. And we ARE working on having Sam back to school 5 days a week in April and take one Wed. off every 2 weeks (this was on advice from the NEUROLOGIST!) I also had to explain that this brain injury could take YEARS to heal-- it is not 'better' just because the scar is healed up on his head.
We did finally settle on some things to help Sam with the classes. In Social Studies, he will work on daily work and have open book tests (so there is no stress about studying for him). In Math he will work on his booklets and some work in the text books and he will be checking in with the teachers when things get confusing.
It was very hard explaining Sam's behaviour with him there too. I had to say things that were embarassing for him to have me say to the teachers but it needed to be said so that they could understand... I hope and pray. I had to tell them about his reverting to immature behaviours when he is overwhelmed or when his sensory overload kicks in -- but I wonder if they got it or if I was making excuses for him. I honestly dont know if they get that he has a BRAIN INJURY!
I was trying to get across something that I have been telling people(not just teachers) since the beginning about organization in his brain and life and the other day I finally got how to explain it that HOPEFULLY people would get (and not always make me feel less with 'well he IS a teenager and that is normal' attitude) It was this: YES he is a teen with normal teen issues and YES most teens are not overly organized or together with school BUT the big difference is that eventually 95% (or so) will EVENTUALLY get it together! If Sam doesnt learn now how to do that his brain will never learn as it is still healing and needs to learn how to reroute his thought patterns NOW so that he can have those tools for later in life.
I did send some YouTube videos out to the teachers and the school division that had a lady with a TBI and she explains things in suc a way that I never could (she and her videos can be found HERE) Te hope had been for the teachers to watc the videos BEFORE we met with them but apparently the internet at the school is slow or something and they were unable to watch them but another teacher did manage to watch them and said that they helped to to understand what Sam (and us) must go thru! (wehavent met with this teacher yet--this semester) .
I wish people could understand that we are doing what we feel is best for Sam, that the doctors dont even know exactly what to do or how to deal with this as he is doing so much better than expected. So here I sit feeliong like I am going crazy with Sam and maybe I am not doing what is best for him. Maybe I am screwing it all up and making life worse for him, I dont know anymore! I feel so horrible to even THINK that maybe it would be easier if he were worse then at least people would SEE that there are issues. I once told a friend that I was actually jealous of her with her son (he had cancer) because people just took everything they were going thru at face value-- just that ... while we are fighting to get one or 2 people to understand the frustration that we go thru on a daily basis! People will accept things of people with diagnosis' that are more prevelant in the media or in thier lives than they will with ones that are seemingly less so-- if only they knew how "common" Brain injuries are!
After our meetings and other appts. we dropped Dennis off at his car (he had a meeting last night) and we drove home and let me tell you that was not a pleasant drive. Both Dennis and I could see the change in Sam as we were with the last teacher. His whole demeanor changed and I knew I was in for a night and once in the car so did the other kids. No sooner had we walked in the door of the house and it started. The other 3 kids knew Sam was in a mood so immediately they were on the defensive and that started a well versed production in our lives. Once everyone had chores done and dinner on the table I had it out with them and trying to get things back to a respectful level. It was 8.30 before things were 'right' with the house...
I think I need to get back to writing more frequently on here again. There is just too much to put into one post without feeling like I am rambling or babbling....
I had hoped for a different posting this week but apparently it will wait for another day.
I want to throw a fit...
I want to throw SOMETHING ...
then I want to cry some more...
We met with 2 of Sam's teachers last night and that is how I felt when we left the school.
One teacher seemed to 'get it' to a point with what we were telling her- Sam just needs some extra help with organizing his work, to stay on task and to get work done. He DOES NOT need to have things made easier for him (meaning he doesnt need his work 'dumbed down' for him -- for lack of better terminology). The other teacher I am not sure understood what we were trying to do for Sam. I felt like he thought we were babying him -- in other words there is nothing wrong with him 'really'. The teacher commented that if it were his child he "wouldnt think twice about having him at school 5 days a week and give him a 'spare' once a day'. I wanted to explain to him (to 'dumb it down' for him) that Sam needs the one day at home for REST and one period a day AT SCHOOL is not rest for his brain. For one, when he is behind in something teachers would take that 'spare' and use it for him to get caught up (no rest...) or, two,he would use it to play on computers or his iPod (no rest...) since he IS still a teenager!When Sam is at home on Wed. he is doing nothing but laying on the couch to rest his brain! (There is no computers, video games or other things that will cause his brain to work over time!) This is a teacher that has just gotten Sam in is class room (new semester change) and I am sure hasnt read any of the literature that I gave the teachers. And we ARE working on having Sam back to school 5 days a week in April and take one Wed. off every 2 weeks (this was on advice from the NEUROLOGIST!) I also had to explain that this brain injury could take YEARS to heal-- it is not 'better' just because the scar is healed up on his head.
We did finally settle on some things to help Sam with the classes. In Social Studies, he will work on daily work and have open book tests (so there is no stress about studying for him). In Math he will work on his booklets and some work in the text books and he will be checking in with the teachers when things get confusing.
It was very hard explaining Sam's behaviour with him there too. I had to say things that were embarassing for him to have me say to the teachers but it needed to be said so that they could understand... I hope and pray. I had to tell them about his reverting to immature behaviours when he is overwhelmed or when his sensory overload kicks in -- but I wonder if they got it or if I was making excuses for him. I honestly dont know if they get that he has a BRAIN INJURY!
I was trying to get across something that I have been telling people(not just teachers) since the beginning about organization in his brain and life and the other day I finally got how to explain it that HOPEFULLY people would get (and not always make me feel less with 'well he IS a teenager and that is normal' attitude) It was this: YES he is a teen with normal teen issues and YES most teens are not overly organized or together with school BUT the big difference is that eventually 95% (or so) will EVENTUALLY get it together! If Sam doesnt learn now how to do that his brain will never learn as it is still healing and needs to learn how to reroute his thought patterns NOW so that he can have those tools for later in life.
I did send some YouTube videos out to the teachers and the school division that had a lady with a TBI and she explains things in suc a way that I never could (she and her videos can be found HERE) Te hope had been for the teachers to watc the videos BEFORE we met with them but apparently the internet at the school is slow or something and they were unable to watch them but another teacher did manage to watch them and said that they helped to to understand what Sam (and us) must go thru! (wehavent met with this teacher yet--this semester) .
I wish people could understand that we are doing what we feel is best for Sam, that the doctors dont even know exactly what to do or how to deal with this as he is doing so much better than expected. So here I sit feeliong like I am going crazy with Sam and maybe I am not doing what is best for him. Maybe I am screwing it all up and making life worse for him, I dont know anymore! I feel so horrible to even THINK that maybe it would be easier if he were worse then at least people would SEE that there are issues. I once told a friend that I was actually jealous of her with her son (he had cancer) because people just took everything they were going thru at face value-- just that ... while we are fighting to get one or 2 people to understand the frustration that we go thru on a daily basis! People will accept things of people with diagnosis' that are more prevelant in the media or in thier lives than they will with ones that are seemingly less so-- if only they knew how "common" Brain injuries are!
After our meetings and other appts. we dropped Dennis off at his car (he had a meeting last night) and we drove home and let me tell you that was not a pleasant drive. Both Dennis and I could see the change in Sam as we were with the last teacher. His whole demeanor changed and I knew I was in for a night and once in the car so did the other kids. No sooner had we walked in the door of the house and it started. The other 3 kids knew Sam was in a mood so immediately they were on the defensive and that started a well versed production in our lives. Once everyone had chores done and dinner on the table I had it out with them and trying to get things back to a respectful level. It was 8.30 before things were 'right' with the house...
I think I need to get back to writing more frequently on here again. There is just too much to put into one post without feeling like I am rambling or babbling....
I had hoped for a different posting this week but apparently it will wait for another day.
Monday, February 22, 2010
Simply amazing...
God is still working His miracles and amazing me! We have been praying to find support for not only Sam and other survivors but also for us as caregivers and BAM! Yesterday I found a site (cant even remember where it was) that had a phone number on it for a TBi group in Dauphin. I called today and almost an hour later not only had a date and time for meetings (that meet together then split into survivor and caregiver groups) but also has an upcoming conference on TBI, and many people who are really adovating for more TBI awareness and support!!!!! Can you see me smiling!? ☺ I am so excited about this! We still havent heard if tonights group is meeting and I think we will go to it to see what it is about too but there is now OPTIONS for where we want to go!
Myra (the Dauphin lady I spoke to) asked me if I would be interested in doing some phoning around our area to the local papers and MLA and when I did-- one of the papers will not only do a write up on it but wants to do a follow up on Sam to tie it all together! (this is the other local paper-- not the one that did the first write up on him!)
WOW-- God you are amazing and I love how you can take a prayer and not only answer it but knock me on my butt with that answer! You are an awesome God. Thank you so much for ALL the 'little' prayers you answered in the few phone calls I made today...
I am speechless .... I know-- I know -- I know... now you are amazed! lol
Friday, February 19, 2010
me? who.... whhhhaa?
Do you ever get that feeling like you should maybe take the kids to the doctor but you KNOW that as soon as you do they will be perfectly fine and you will be left looking like one of those mothers that has Munchausen by proxy!? Some days (ok a lot of the time) I feel like this.... especially with Sam.
This morning as I was taking the kids to school he tells me that as they were going to visit my dad last night before air cadets, that when they walked in the PCH his vision went goofy on him. He had no peripheral vison (when the accident happened Samuel lost all peripheral vision in his left eye and we were told that he would have only about 50% of it when he was recovered-- but he not only gained it ALL back but his vision was improved to the point of not wearing his glasses anymore!). So his dad told him to sit down til it past. Not too sure how long this was for (they got home after 10pm and dennis was up late this morning and didnt get the chance to share the story yet). I asked if he hit his head at all or if anything happened at school that could account for this and sam said 'no'... My first reaction was a racing heart and stomach dropping and my mind raced that i should get him in to see the Dr. today... then I took a deep breath and told him that we need to remember to tell the Dr. of this at our next appt (in about 2 weeks). So I have made a note on Alice (my iPod) to be sure to let the doctor know about it (and i will interogate my husband tonight and get more of the story).
This upcoming Monday is our first visit to the TBI group support meeting in Brandon. To be honest I am nervous. I am scared that it will create an anxiety in Sam, or he will find things that others say there and use them to 'play us' (cuz lets be honest and not forget-- he is a teenager!☺) or that things that people will say may scare him and give him cause to worry. I have been praying for Sam and has really noticed changes in him. He is resting more, he is more open to talking to me about how things are going in his day and in his head (for the most part). I still havent spoken to the school yet (I have been away for 2 field trips inbetween having some lovely stomach bug... and Josh had the bug...) So Monday morning I will call and speak to the Vice Principal and talk with her. Mostly just to check in that things are going as sam says they are for him at school.
I have been trying to get more awareness our there too about TBI. There is a serious lack of support and counselling for not only the survivor but for the family too -- well in our area at least. (this group that we are going to with Sam is more for adults but we are taking him anyway since the last time we were there -- for my dad-- there was a young girl there with a TBI.)
Again I seem to be scattered with my brain and my thots ... will I ever be able to string together a logical post again? I sometimes kid Sam that I have a TBI too from being so close with him... ☺
This morning as I was taking the kids to school he tells me that as they were going to visit my dad last night before air cadets, that when they walked in the PCH his vision went goofy on him. He had no peripheral vison (when the accident happened Samuel lost all peripheral vision in his left eye and we were told that he would have only about 50% of it when he was recovered-- but he not only gained it ALL back but his vision was improved to the point of not wearing his glasses anymore!). So his dad told him to sit down til it past. Not too sure how long this was for (they got home after 10pm and dennis was up late this morning and didnt get the chance to share the story yet). I asked if he hit his head at all or if anything happened at school that could account for this and sam said 'no'... My first reaction was a racing heart and stomach dropping and my mind raced that i should get him in to see the Dr. today... then I took a deep breath and told him that we need to remember to tell the Dr. of this at our next appt (in about 2 weeks). So I have made a note on Alice (my iPod) to be sure to let the doctor know about it (and i will interogate my husband tonight and get more of the story).
This upcoming Monday is our first visit to the TBI group support meeting in Brandon. To be honest I am nervous. I am scared that it will create an anxiety in Sam, or he will find things that others say there and use them to 'play us' (cuz lets be honest and not forget-- he is a teenager!☺) or that things that people will say may scare him and give him cause to worry. I have been praying for Sam and has really noticed changes in him. He is resting more, he is more open to talking to me about how things are going in his day and in his head (for the most part). I still havent spoken to the school yet (I have been away for 2 field trips inbetween having some lovely stomach bug... and Josh had the bug...) So Monday morning I will call and speak to the Vice Principal and talk with her. Mostly just to check in that things are going as sam says they are for him at school.
I have been trying to get more awareness our there too about TBI. There is a serious lack of support and counselling for not only the survivor but for the family too -- well in our area at least. (this group that we are going to with Sam is more for adults but we are taking him anyway since the last time we were there -- for my dad-- there was a young girl there with a TBI.)
Again I seem to be scattered with my brain and my thots ... will I ever be able to string together a logical post again? I sometimes kid Sam that I have a TBI too from being so close with him... ☺
Monday, February 1, 2010
Long time no update
I know I know it has been a loooooong while since I have posted on here. Please dont think it is for lack of info to share... more like lack of energy or gumption to put it on. And sadly the reason is because I am tired of explaining to people that these issues are partly due to being a teen and partly to having a TBI. I am tired of people saying "oh that is just normal teen behaviour" or "all teens go thru this". I just want to scream and smack them! Then this past weekend we were at a family dinner and 2 family members were trying to put alot of the crap that was going on with ALL the kids on Sam. I do know that he is not perfect but with a TBI when there is energy and hyperactivity it can feed Sam's responses to things... so I tried be polite and just made the observation that "it is all the kids that are 'feeding' off of each other and thier attitudes" the reply I got was"ya but it is so much easier to blame it on Sam... right Hannah." I mean seriously!!! WTF!?! It was a good thing that I was in a seperate room when that comment was made or I may be typing this from a cell.
I have been working on getting off of the pariet pills (for my GERD) and am now on day 2 of no pills and week 2 of no coffee (real coffee I mean-- de-caf is in my morning routine) and a pile of other foods that are out of my diet. (it seems that tea will be out of it too after this cup I just had-- major burning going on right now!) So with all this detoxing going on in my system it is no wonder I got sick on Friday with a lovely chest cold that is moving into my sinuses. I have been on the couch for almost 4 days straight, sleeping and resting, folding a bit of laundry and a bit of houseowrk here and there.... and slowly getting WORSE! Wednesday we are off to Wpg to take Sam in for another neurologist appt. We have to inform the doc. that Sam is back to a 4 day week and there was a huge improvement in him once we changed back to this. SO we will see what he says about it all. And to really make it a memorable trip, we are driving in and out in one day! I was hoping to get a room at the Ron. MacDon. house but there is no room, so Sam will be in fine form by about noon. (it is a 3 hour drive each way) and we try to make use of the time and do some shopping at Costco anad Value Village while we are in the city... There will be lots of prayers sent up for our trip!
This week is exam week for the highschool and the boys write one today and one tomorrow. And trying to get Sam to remember things again (like books to study with or review sheets) has been a HUGE battle for Dennis and I. There was a blow up last night about math studying and routine and trying to get him (Sam) to understand that this is important for him to remember-- SO USE THE iPOD!!! Cross your fingers for a better semester next term.
I just cant seem to get my thots down on here straight, there is so much to say and nothing really. It all sounds so trivial and to be honest I couldnt handle another 'just a teen thing' from anyone. I honestly had expected us to be in a different place with all of this by this time, not crying daily about something Sam has done or said to me, or something someone else has said to me about it.January was not a great month, so maybe February will be better.
I have been working on getting off of the pariet pills (for my GERD) and am now on day 2 of no pills and week 2 of no coffee (real coffee I mean-- de-caf is in my morning routine) and a pile of other foods that are out of my diet. (it seems that tea will be out of it too after this cup I just had-- major burning going on right now!) So with all this detoxing going on in my system it is no wonder I got sick on Friday with a lovely chest cold that is moving into my sinuses. I have been on the couch for almost 4 days straight, sleeping and resting, folding a bit of laundry and a bit of houseowrk here and there.... and slowly getting WORSE! Wednesday we are off to Wpg to take Sam in for another neurologist appt. We have to inform the doc. that Sam is back to a 4 day week and there was a huge improvement in him once we changed back to this. SO we will see what he says about it all. And to really make it a memorable trip, we are driving in and out in one day! I was hoping to get a room at the Ron. MacDon. house but there is no room, so Sam will be in fine form by about noon. (it is a 3 hour drive each way) and we try to make use of the time and do some shopping at Costco anad Value Village while we are in the city... There will be lots of prayers sent up for our trip!
This week is exam week for the highschool and the boys write one today and one tomorrow. And trying to get Sam to remember things again (like books to study with or review sheets) has been a HUGE battle for Dennis and I. There was a blow up last night about math studying and routine and trying to get him (Sam) to understand that this is important for him to remember-- SO USE THE iPOD!!! Cross your fingers for a better semester next term.
I just cant seem to get my thots down on here straight, there is so much to say and nothing really. It all sounds so trivial and to be honest I couldnt handle another 'just a teen thing' from anyone. I honestly had expected us to be in a different place with all of this by this time, not crying daily about something Sam has done or said to me, or something someone else has said to me about it.January was not a great month, so maybe February will be better.
Sunday, December 27, 2009
One Hundred Posts-- Wow
This is my 100th post-- and I am just... wow, amazed. I never thought that this blog would continue past our first month or two home (even though I knew the journey was going to be a long one) and here I am starting post 100 and we are 1 year, 4 months, 29 days from Sam's accident and here I am... here we all are...Dancing on the outskirts of 'normal', tiptoe-ing through TBI issues and setting and surpassing goals along side of some areas of failure new learning.
I would love to say that things with our house are great and all is rosy, cheery and FAB-U-LOUS but I would be lying. Lying to myself and to others, so instead I am trying to stay 'real' (which is really code word for sane)
This new year for us will be starting with some backtracking. Sam will be going back to being home every Wednesday for rest. He is stillsuffering living with fatigue issues. ( I wont say suffering as I feel alot of days that it is ME that suffers when he gets fatigued ... ☺ smiling here or else I may cry)
This year will be one tht will be of small steps, no real leaps and bounds that I can foresee. But we will take any steps forward that we can get.
2010 will be the year where if all goes according to my plan our house in Neepawa will sell and we can get out of the major debt that this move to thenew old farm house has cost us (or win a lottery☺) and we will all be extremely healthy and happy............................................................. but I know it is all according to HIS plan and whatever He allows to cross into our lives we will take in stride and handle with as much grace and thankfulness as we can muster. I wish life was a novel that we could read the last few pages to see how it all ends but that just isnt the way it is. (if it ws I would return my book for a new one-- maybe one with one of those cruise ships on the front -- oh wait that is a travel magazine...lol)
The new year will find me on here once in a while. When things need to be updated or I need to vent, or for no other reason than for me to work out my frustrations of life on. I dont claim to be an expert or even a semi pro at anything except maybe on stress...LOL but you can all find me on here once in a while.
I wish my readers a Happy, Healthy New Year that is filled with all of God's Blessings!
I would like to post one question and even if you are usually a 'lurker' on here...
Have you learned anything this past year with reading my blog? It can be about TBI, life or ANYTHING? PLease let me know if anything I have put on here has been helpful to you!
I would love to say that things with our house are great and all is rosy, cheery and FAB-U-LOUS but I would be lying. Lying to myself and to others, so instead I am trying to stay 'real' (which is really code word for sane)
This new year for us will be starting with some backtracking. Sam will be going back to being home every Wednesday for rest. He is still
This year will be one tht will be of small steps, no real leaps and bounds that I can foresee. But we will take any steps forward that we can get.
2010 will be the year where if all goes according to my plan our house in Neepawa will sell and we can get out of the major debt that this move to the
The new year will find me on here once in a while. When things need to be updated or I need to vent, or for no other reason than for me to work out my frustrations of life on. I dont claim to be an expert or even a semi pro at anything except maybe on stress...LOL but you can all find me on here once in a while.
I wish my readers a Happy, Healthy New Year that is filled with all of God's Blessings!
I would like to post one question and even if you are usually a 'lurker' on here...
Have you learned anything this past year with reading my blog? It can be about TBI, life or ANYTHING? PLease let me know if anything I have put on here has been helpful to you!
Wednesday, December 9, 2009
less than stellar ...
Some kids are so mean. Today Sam came home from school in a bad mood which transferred to his brother then me. There was a fight in the barn resulting in a bloody nose, yelling at me (and yes swearing was involved on his part), there was stomping of feet, and slamming of doors (well as best as they can be slammed in this house), threats of packing up and moving out crying and more yelling and swearing.
I didnt handle it well. I was thinking that Sam was just being a teenager and it turned out to be more-- which I found out once I calmed down and came to the realization that this is not typical.(if you remember we have all been sick and yesterday and today were my turn...)
Anyhow, it turns out that there is a kid at school that has been harrassing Sam lately with a stupipd gesture. He has been calling to Sam in class, talking to him for a bit and then pretending to shoot himself in the head. He thinks it is a great joke. Today Sam was back at school fter being sick for 4.5 days and was still tired and feeling blah... and this kid started this again. There were a few other instances of just general teasing of Sam by some other kids and one kid (a boy in the grade above him) that chose today to PICK UP Sam and bounce him off the walls with his head in the change rooms in gym and Sam didnt tell the teacher.
We spoke to him about what to say to this boy who has been harrassing him for a while and decided that some appropriate responses would be "You wouldnt be able to hndle the recouperating if you had it happen to you." or if it is in class speak loud enough for the teacher to hear "You know (insert name here) people might think you are suicidal if you keep this up." Basically to put the spotlight on his behviour and take it off of Sam. We lso suggested to maybe get some friends to help back him up with this boy. Sam is also going to ask the teacher if he could move his seat so he is not close to him.
We also suggested for Sam to talk to the school counsellor if he is having a day that is too rough to handle. So that he has help immediately not having to wait til he gets home and takes it all out on us here.
I think too that we need to maybe start having him home one day a week again. It is all just so hard to know what to do. Are we babying him? Is he playing us? It is hard to know since the doctors tell us it can be at least 2 years recouperating and stuff I have read about TBI say that it can be 4, 5, 6 years -- some people fight this tiredness and fatigue all thier lives. So we need to work on something that will work for life not for now.
I really feel like a failure tonight. I didnt see this one coming and when it hit I handled it all wrong. I should have realized that there was something wrong with him when I picked them up at the bus. I am also hurt from the words that Sam yelled at me. After some of his les creative words and phrases, he told me he was packing and leaving... and stomped off. When I went and asked where he would go his reply was "Anywhere but here will be fine..." I dropped this ball and feel like dirt, but I know I need to not take it personally and know that I cant fix everything... but then I am the mom... knowing and fixing are my jobs
I didnt handle it well. I was thinking that Sam was just being a teenager and it turned out to be more-- which I found out once I calmed down and came to the realization that this is not typical.(if you remember we have all been sick and yesterday and today were my turn...)
Anyhow, it turns out that there is a kid at school that has been harrassing Sam lately with a stupipd gesture. He has been calling to Sam in class, talking to him for a bit and then pretending to shoot himself in the head. He thinks it is a great joke. Today Sam was back at school fter being sick for 4.5 days and was still tired and feeling blah... and this kid started this again. There were a few other instances of just general teasing of Sam by some other kids and one kid (a boy in the grade above him) that chose today to PICK UP Sam and bounce him off the walls with his head in the change rooms in gym and Sam didnt tell the teacher.
We spoke to him about what to say to this boy who has been harrassing him for a while and decided that some appropriate responses would be "You wouldnt be able to hndle the recouperating if you had it happen to you." or if it is in class speak loud enough for the teacher to hear "You know (insert name here) people might think you are suicidal if you keep this up." Basically to put the spotlight on his behviour and take it off of Sam. We lso suggested to maybe get some friends to help back him up with this boy. Sam is also going to ask the teacher if he could move his seat so he is not close to him.
We also suggested for Sam to talk to the school counsellor if he is having a day that is too rough to handle. So that he has help immediately not having to wait til he gets home and takes it all out on us here.
I think too that we need to maybe start having him home one day a week again. It is all just so hard to know what to do. Are we babying him? Is he playing us? It is hard to know since the doctors tell us it can be at least 2 years recouperating and stuff I have read about TBI say that it can be 4, 5, 6 years -- some people fight this tiredness and fatigue all thier lives. So we need to work on something that will work for life not for now.
I really feel like a failure tonight. I didnt see this one coming and when it hit I handled it all wrong. I should have realized that there was something wrong with him when I picked them up at the bus. I am also hurt from the words that Sam yelled at me. After some of his les creative words and phrases, he told me he was packing and leaving... and stomped off. When I went and asked where he would go his reply was "Anywhere but here will be fine..." I dropped this ball and feel like dirt, but I know I need to not take it personally and know that I cant fix everything... but then I am the mom... knowing and fixing are my jobs
Monday, December 7, 2009
No change
Today I have not 1 not 2 but 3 home sick today! Josh is better and gone to school but Dennis, Sam and Isaac are all home and in bed sleeping. Still struggling with fevers with Sam and now Isaac... I hope things start making the swing upwards ... and we start getting healthy here. Dennis and I are supposed to go to Brandon to do Christmas shopping on Friday and I can see that I will be the sick one then!
Off to make chicken noodle soup and hand out ginger ale and water to my ill ones...
Off to make chicken noodle soup and hand out ginger ale and water to my ill ones...
Sunday, December 6, 2009
Small scare...
We have been sick here in the Ginter household and when I say 'we' I mean Dennis, Josh, Sam and now Isaac is getting sick too!
But last night we had a bit of a worry/scare. Sam's temperature didnt seem to want to come down after tylenol, 2 cool showers, and some ice... after a few hours we got him to a 'lukewarm' stage and I was able to not stress about it. If Sam's temperature gets too high or won't come down we are to take him to the hospital and if he gets any symptoms of the H1N1 we are to go in immeadiately. (no we are not taking the shots-- there is just not enough 'backup' on the vaccine for us to warrant injecting our children with it where as the Tamiflu has a proven track record...)
But we got his temperature down finally with a cool shower and ice on the back of his neck. When I went to check on him last night before bed he was still a bit warm but not hot like he was before, so we will have to see how he is this morning when he gets up. I didnt sleep too well last night as I was worried about him and Josh, so today there may be a nap in my future!
Change of plans this morning... as Sam woke up he was still quite fevered so we took him into the hospital as a procaution. GOod news tho, no H1N1 for our house!!!! BUt he is sick and will be home for at least a day or two. Still have to watch the fever but I think with few rest days he will be fine. whew...
But last night we had a bit of a worry/scare. Sam's temperature didnt seem to want to come down after tylenol, 2 cool showers, and some ice... after a few hours we got him to a 'lukewarm' stage and I was able to not stress about it. If Sam's temperature gets too high or won't come down we are to take him to the hospital and if he gets any symptoms of the H1N1 we are to go in immeadiately. (no we are not taking the shots-- there is just not enough 'backup' on the vaccine for us to warrant injecting our children with it where as the Tamiflu has a proven track record...)
But we got his temperature down finally with a cool shower and ice on the back of his neck. When I went to check on him last night before bed he was still a bit warm but not hot like he was before, so we will have to see how he is this morning when he gets up. I didnt sleep too well last night as I was worried about him and Josh, so today there may be a nap in my future!
Change of plans this morning... as Sam woke up he was still quite fevered so we took him into the hospital as a procaution. GOod news tho, no H1N1 for our house!!!! BUt he is sick and will be home for at least a day or two. Still have to watch the fever but I think with few rest days he will be fine. whew...
Thursday, December 3, 2009
Memory Lane...
I have been trying to get some gifts ready for the kids for Christmas (we are all making gifts this year as the $$ is a bit tight). I trying to make each of the gifts for the kids a gift filled with memories. Joshua will be getting a 16X20 frame with different pictures of himself and Dwayne (my step dad that passed away Sept '08). Dwayne was Joshua's mentor, his hero. It is not unusual to find Joshua at the computer going thru pictures of Dwayne and our family.
Samuel's gift will be a scrapbook that I started when he was in the hospital after his accident. It has photos of alot of the medical staff that worked on or with Sam along with notes of encouragement for him. There are also pictures and letters/notes from friends and family. I had sort of worked on it before but not to the extent that I have been this week. It has been very emotional, hard to see the pictures of him in the hospital. The pit of my stomach rolls, my eyes tear up... I can feel the anxiety and the stress of when we were in Winnipeg as if it were still happening to me. My chest gets tight, my heart pounds and I have cried many, many times over the book. I have added a pocket to the back of the book with cards from people, the news article that the local paper did on him in the spring, and a few other tidbits for Sammi. I am stuck on what I am going to do for Hannah and Isaac and to be honest I think I should have thought about (and did) theirs first and saved Josh's and Sam's gifts for last -- they are so emotional and I really didn't think that making these gifts was going to be this hard.
It has been a rough week ... month .. heck things here haven't gotten any less stressed for over a year ...actually but there are more to get through I guess ... right?
Tuesday, December 1, 2009
I have been struggling with updating on here for fear of it sounding like whining or something.Things have been 'fine' with Sam, my dad and others of the house... it has been more me. I have been having lots of anxiety attacks and in the oddest of placest and for no reason that I can see. It is exhausting. I am beat. I am drained. I am tired of it.
I am not sure if it is all just in my head or if I am needing to get away... or what. Between the house reno's, running kids, waiting for the sale of the old house, looking after my dad, my mom lives right across the road and seems to somedays forget that we have a life to try to get through (she asks for 'one small thing and the next minute it is an all day thing), and trying to lose weight... sigh
I can feel the heavy weight of depression kicking in and although I am fighting it -- I feel that I am losing the battle.
Is it possible to cancel Christmas this year and crawl into bed until it is all over?
I am not sure if it is all just in my head or if I am needing to get away... or what. Between the house reno's, running kids, waiting for the sale of the old house, looking after my dad, my mom lives right across the road and seems to somedays forget that we have a life to try to get through (she asks for 'one small thing and the next minute it is an all day thing), and trying to lose weight... sigh
I can feel the heavy weight of depression kicking in and although I am fighting it -- I feel that I am losing the battle.
Is it possible to cancel Christmas this year and crawl into bed until it is all over?
Saturday, November 14, 2009
In Remembrance
Here is a picture of my 2 youngest sons Samuel (13yrs) and Isaac (12 yrs) in full uniform on our way to the Remembrance Day Services. They were so handsome!
I cried thru the service for not only the soldiers who have fought and made the supreme sacrifice but for the ones that still are making acrifices everyday so that we can live in this country.
I cried for their families that sacrifice their lives being on hold while their loved ones are working hard to keep the world and Canada safe for us.
So that our boys can go to Air Cadets, basketball, football and school.
So that our daughters can go to dances, go shopping become doctors and lawyers, stay home moms.
So that we can walk down our streets free from fear and death.
It was a long service but in the grand scheme of things cant we 'sacrifice' 2hours a year for the men and women that fought and still do?
I dont think that it should even take a second thought... we should just go-- they do.
I cried for their families that sacrifice their lives being on hold while their loved ones are working hard to keep the world and Canada safe for us.
So that our boys can go to Air Cadets, basketball, football and school.
So that our daughters can go to dances, go shopping become doctors and lawyers, stay home moms.
So that we can walk down our streets free from fear and death.
It was a long service but in the grand scheme of things cant we 'sacrifice' 2hours a year for the men and women that fought and still do?
I dont think that it should even take a second thought... we should just go-- they do.
Sunday, November 1, 2009
#62 Sam Ginter
So last night we watched Sam's game! It was awesome!! They used the jumbotron for replays, the sound system for commentating, the stadium lights were on when it got darker... awesome is all I can say.
The drive in was an emotional one, as we had a great talk with Sam about his past year and the goals he not only set for himself but met and even surpassed, before we dropped him off to the bus. So of course the conversation continued as Dennis and I drove into the city. Thankfully it was cold outside and so tears were not so easily flowing once at the stadium!
During the game Sam caught the kick return and got about 10yards down! I was able to sit and watch as he became the meat in a "sandwich" tackle!
That black outfited person in the middle of the 2 silver uniforms is my Sam!!! AND I did not jump up or freak out. I did manage to get the pictures of it on the jumbotron in the replays... it was simply amazing...can describe the feelings I ran thru through the whole game. On a humourous note, there were programs to be bought for the football teams that were playing this weekend (we were playing the rural 9man) and they listed the players heights and weights... as we looked over the Tigers and the Outlaws team rosters we noticed Sam was the lightest -- the weight range for the Tigers was 295-139lbs -- Sam is 115lbs 5'7"!! If we really looked hard we might be able to find someone his size but I would guess they would be in the younger teams...lol
Now for a break with football (til spring) for the next week... then we start in Junior Varsity Basketball with Joshua! So stay tuned for basketball pics to be posted here until that season is over!
Isaac was busy selling poppies yesterday with the Air Cadets but I didnt get any pictures as he didnt have a full uniform-- so those pictures will come later this week! (sniff-- my babies are all growing up on me...)
Friday, October 30, 2009
Stadium fever...
Tomorrow Sam and the football team are playing their last game at the stadium in Winnipeg!!! I am so excited for them! It is the 'consolation prize' to the play off. See the Tigers lost every game this season but then they are a young team... but a team with great potential!I cant wait to watch them play...
It is so hard to imagine that last year (Sept7) we were taking Sam to watch the Banjo Bowl (Sask-Wpg game) and he walked up the long ramp to the top of the stadium to watch the game. He didn't want to use the wheelchair, the carts or the elevator. This boy used all his strength and walked up to our seats-- only about 6 weeks after his brain injury. Even as I am typing this tears of pride roll down my cheeks to know how far he has come. I am so proud of all he has accomplished this past year and to see that he is not only going to school full time (for the most part) but he made his goals reality!
We were told in the emerg. room that his dreams of football were going to be just that... dreams. (along with his dream of being a pilot and doing woodwork-- so far his peripheral vision has not only healed but his 'regular' has improved so there is no longer glasses-- so both dreams are a real possibility!) I want to go back to the emerg. and meet the surgeon and tell him how great Sam is doing. I know that the doctor would be very amazed and happy...maybe one day we will.
Sam has been having a few minor issues with his left side of late but since that is his weak side we will work on it over the winter and help him to strengthen it... bow flex, elliptical, picking up marbles with his toes, eating more and getting rest.
I am so excited about tomorrow I just cant explain it. I will have to work so hard to keep my tears of joy in check as other wont understand...
"Thank You God for all of Your miracles, and for Your unfailing, unwavering love! Without You this past year would have not been what it has been! Thank You for everyone that has read and still reads this blog. Thank You for being understanding and supporting. I wish I could give you all a big hug so you know how much I appreciate your comments, emails and stopping in. Thank you for putting up with my tears, rants and praises. I am truly blessed."
Thursday, October 22, 2009
where does the time go?
Well things with my dad are stabilized now, but still no date on a new dental surgery and he is finally going to his doctor tomorrow. I am supposed to go but i am sick with the flu and wont be able to make it.... so i will have to do what i can via the phone!
Sam has been quite busy with football and is loving it! It is so great to see him out there running, throwing and catching, and yes..... **gulp** getting tackled! it is so hard to believe that last year this time we were working hard to get his endurance and strength up! he was still walking up and down the drive way in his combat boots (they are very heavy) to build up his legs to help keep the left side from dragging. He was still sleeping lots and going to school parttime, there were still major attitudes and crying jags... a totally different kid (for the most part) than who is here with us now.
It never ceases to amaze me just how awesome God is and what He can and will do for His children. Answered prayers, unsnanswered prayers that when you look back make sense, prayers answered that you never even thought to ask... awesome is all I can say.
Oh ya! Our Isaac went with Sam last week to Air Cadets, just to see if he would enjoy it (which i thought he would since he loves things to be organized and structured). We asked him to just go and see what all cadets were about for a few weeks and then make his decision, but low and behold he came to the van with registration papers stating that he LOVED IT and was joining! I think we will start to see changes in this young man too soon... **sigh** it is so great to see the kids growing up and yet it makes my heart tug a bit and somedays I just want to sit and cry over where the time has gone...
I just read this book by Patricia Jones. She is my step dad's sister and she writes about how she dealt with her mom's dementia and alzhiemers. I found it so enouraging to read as I find alot of it was what I deal with, with my dad. He knows me--sometimes, he is extremely repetitive with "i love you" and a few other choice phrases (but he also tells absolutely EVERYONE that he loves them), he shows extreme anger towards me... the list is endless. I told Pat how the book was helpful to me to know that I am not alone in this and that with TBI (in our case with both dad and Samuel) that there is not much help for us-- dad is considered to be'too far gone' with his TBI and Samuel not enough to warrant help (or so it seems to us...). But her book hit so close to home that at times I had to put it down since tears were so busy clouding my vision that I couldnt read but as soon as I could regain my composure I was back reading it again. I strongly suggest that others read this even if you dont have a loved one or know of anyone that is struggling in any of these areas -- knowledge is power and you never know when you may be called on by God to share what you know!
Sam has been quite busy with football and is loving it! It is so great to see him out there running, throwing and catching, and yes..... **gulp** getting tackled! it is so hard to believe that last year this time we were working hard to get his endurance and strength up! he was still walking up and down the drive way in his combat boots (they are very heavy) to build up his legs to help keep the left side from dragging. He was still sleeping lots and going to school parttime, there were still major attitudes and crying jags... a totally different kid (for the most part) than who is here with us now.
It never ceases to amaze me just how awesome God is and what He can and will do for His children. Answered prayers, unsnanswered prayers that when you look back make sense, prayers answered that you never even thought to ask... awesome is all I can say.
Oh ya! Our Isaac went with Sam last week to Air Cadets, just to see if he would enjoy it (which i thought he would since he loves things to be organized and structured). We asked him to just go and see what all cadets were about for a few weeks and then make his decision, but low and behold he came to the van with registration papers stating that he LOVED IT and was joining! I think we will start to see changes in this young man too soon... **sigh** it is so great to see the kids growing up and yet it makes my heart tug a bit and somedays I just want to sit and cry over where the time has gone...
I just read this book by Patricia Jones. She is my step dad's sister and she writes about how she dealt with her mom's dementia and alzhiemers. I found it so enouraging to read as I find alot of it was what I deal with, with my dad. He knows me--sometimes, he is extremely repetitive with "i love you" and a few other choice phrases (but he also tells absolutely EVERYONE that he loves them), he shows extreme anger towards me... the list is endless. I told Pat how the book was helpful to me to know that I am not alone in this and that with TBI (in our case with both dad and Samuel) that there is not much help for us-- dad is considered to be'too far gone' with his TBI and Samuel not enough to warrant help (or so it seems to us...). But her book hit so close to home that at times I had to put it down since tears were so busy clouding my vision that I couldnt read but as soon as I could regain my composure I was back reading it again. I strongly suggest that others read this even if you dont have a loved one or know of anyone that is struggling in any of these areas -- knowledge is power and you never know when you may be called on by God to share what you know!
Tuesday, October 13, 2009
You have got to be kidding me!!!
As you know Sam is not the only person in my family with a brain injury. My dad has a severe brain injury and is a quadrilpelgic. He lives in the local personal care home (30 miles away). well yesterday Dennis and I were in Npw picking up the rest of our appliances to move to the new house. We werent even home 15 minutes and the phone rang and it was the PCH... dad had been having some major seizures ALL DAY... so they were transporting him to the hospital to see the doctor. we jumped back into the van and headed the 30 miles back to town to the hospital. The doctor there gave him dilantin -- but not after he had 2 seizures in 20 minutes while we were there. The doctors explanation for them (please keep in mind that this is NOT his regular doctor) is that there iscar tissue forming and causing these siezures. after 14 yrs..... never a real issue with seizures before but now after 14 yrs. to say the least i was, and still am, not impressed with this doctor. he doesnt even know what the history is surrounding my dad and his injury is and he is going to just flippantly give me an answer of "scar tissue". I had to also warn the nurses (at both the PCH and the hospital) that even when dad was on dilantin before he had seizures.... but not of these magnitude.
Dennis and I went for lunch while he was getting his med's (dad was sleeping at this time) and then I went to the PCH to see if there was any reason that they would know of why he is having them -- I asked if his routine had changed, if he had been dropped or his head hit, etc and i got a very loud "NO!" -- shock and horror on thier faces... i was trying to be polite and not accusatory. They had no answer to why things have changed... so back to the hospital we go and wait... and wait... no seizures-- good sign.... "he is resting and we will send him back to the PCH tonight." "OK then we will go and please call me when you are transporting him back. Thank you"
By the time 7pm rolled around there was still no call so i called and low and behold dad was back in his room sleeping.
Today I called and was informed that he had had 3 more seizures this morning... even while on dilantin... his regular doctor was not in his office today, so they (the nurses at the PCH) cancelled dad's appt that we have been waiting for in Wpg (for dental surgery) for MONTHS but never spoke to the doctor about it. I was hoping that they might be able to make a CT scan appt for him too while we were in the city. (Dad needs to be transported by ambulance for most of his appts and this makes him extremely agitated) You would think that if all of a sudden a resident with severe TBI starts having seizures that you would try contact his doctor.... i mean we live in a small town... i am just so frustrated!!!!!!!!
The first doctors 'diagnosis' of scar tissue makes me want to not only scream but it makes me wonder about Sam.... he has never had seizure activity and he actually has physical scar tissue -- does this mean in 14yrs we can expect more to pop up in our life? That the local doctors will be so callous and ignorant about it all that they wont care or the nurses wont fight to alk to a doctor when we need it?
I am so angry right now and frustrated... i am sure this post makes no sense what so ever.
Dennis and I went for lunch while he was getting his med's (dad was sleeping at this time) and then I went to the PCH to see if there was any reason that they would know of why he is having them -- I asked if his routine had changed, if he had been dropped or his head hit, etc and i got a very loud "NO!" -- shock and horror on thier faces... i was trying to be polite and not accusatory. They had no answer to why things have changed... so back to the hospital we go and wait... and wait... no seizures-- good sign.... "he is resting and we will send him back to the PCH tonight." "OK then we will go and please call me when you are transporting him back. Thank you"
By the time 7pm rolled around there was still no call so i called and low and behold dad was back in his room sleeping.
Today I called and was informed that he had had 3 more seizures this morning... even while on dilantin... his regular doctor was not in his office today, so they (the nurses at the PCH) cancelled dad's appt that we have been waiting for in Wpg (for dental surgery) for MONTHS but never spoke to the doctor about it. I was hoping that they might be able to make a CT scan appt for him too while we were in the city. (Dad needs to be transported by ambulance for most of his appts and this makes him extremely agitated) You would think that if all of a sudden a resident with severe TBI starts having seizures that you would try contact his doctor.... i mean we live in a small town... i am just so frustrated!!!!!!!!
The first doctors 'diagnosis' of scar tissue makes me want to not only scream but it makes me wonder about Sam.... he has never had seizure activity and he actually has physical scar tissue -- does this mean in 14yrs we can expect more to pop up in our life? That the local doctors will be so callous and ignorant about it all that they wont care or the nurses wont fight to alk to a doctor when we need it?
I am so angry right now and frustrated... i am sure this post makes no sense what so ever.
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