Today is a ski trip day at the boys school -- so Sam is staying with me (first going to work then coming home at noon to sleep) and we have doctor appointments this afternoon. Sam has been just wiped these past weeks-- wiped as in pale, circles under his eyes, fatigues, grouchy, emotional and just not himself. It is so hard to see and know that the doctors arent doing much to help us!
Today I want answers for his no weight gain (he may be in the 'normal' range for his height-- but he is not anywhere NEAR his pre-accident weight!) , his not sleeping right (we are still waiting for the sleep clinic to contact us!), he has issues with eating -- foods taste different to him now -- so he doesnt eat as much as he used to--hence no weight gain! People (meaning the in the medical field) need to start doing something about getting Sam back to 'normal' or closer to it than we are now!
This is the problem with a TBI like Sam's. He is functioning so well in life that the issues we have with him are going un-noticed and un-cared for by doctors and sadly the education system. I am tired of fighting but i cant stop or else where does that leave Samuel? I am so busy fighting for him that somedays i fee like my other kids maybe resent me for it or that i am missing out on thier things. (for example: I have to take off time from work to have Sam at home that i can't take time off to do things with them at school...)
Dennis and I are planning a fun Spring Break for the kids in a week and a bit and if we cant get Sam to be not so fatigued and pale-- no one will enjoy themselves and we really need a change of pace and a change of view (meaning not be here at home where we are ALL THE TIME). All the kids need a break from what our lives have become and I am hoping that we can get Sam into a 'healthy' form so that everyone can enjoy a week holidays and we can spend some real quality time together and reconnect as a family...
Thursday, March 19, 2009
Tuesday, March 17, 2009
Clarification
I thought today I would post the entire TRUE story about Sam's accident. I was talking with someone the other day and was informed that they had an entirely different "take" on the accident. Then looking back through the posts i saw that I hadn't posted the story as we finally learned it to be! First we thought that Sam had been practicing Air Cadet manuvres and had the gun over his head.
We eventually learned from BOTH Josh and Sam what had actually happened. Here it is:
Josh and Sam were going out to 'clean up' the birds from the barn for Grandpa (and for some moving target practice I am sure!) Sam was using a .22 caliber rifle that was new to him in the respect that it had a scope on it. Sam had learned how to shoot a gun with both eyes open and to use the barrel of your gun to line up your target. There was a bird in Sam's sights and he loaded and cocked his gun to shoot it. As he brought up the .22 to aim and probably misjudged the distance of the gun (since he was not used to shooting one with a scope) and it hit his head and dazed him. This dazing would have resulted in him dropping the gun (possibly hands going numb) and as it hit the ground it discharged at the same time as Samuel fell over from being dazed... thus being shot in the head with the .22. When Josh saw this he ran for the house to get the grandparents and Sam then GOT UP, picked up his gun, carried it in a safe 'travel' manner and proceeded to walk to the house. Grandma and Grandpa met Sam at the door and took him in to clean him up (at this point no one knew he had been shot-- they thought he had been hit in the head with the scope of the gun) When Grandpa stared to clean him up he knew what had happened and he got everyone to the car and rushed to the hospital. Sam was conscience the ride there (but he doesn't remember it) and it was after he was in the hospital that he became paralyzed on the left side.
During this time I was called by Dennis to say that Sam was at the hospital and could i pick him up (still thinking hit by scope) and I got there in time to see them wheeling him out of xray with Grandpa. When I got to them both Sam was covered in blood and he looked up to me and said in a slow garbled way "I hurt my head mom". I was shocked to say the least and the rest of that day is a blur. I do remember calling my friend to see if she could come and get Hannah and Ike since we thought we were going to Brandon, and I think she called Pastor Dean. I know called Dennis and told him that they were going to be taking Sam to Brandon ... i made a few other calls to my mom and to my friend again and then everyone was there. The kids were all crying, our Dr. was reassuring me that things were going to be ok and Dennis and I were on our way to get teh car filled with gas before heading out to Winnipeg.
I know that God interceded for the ride to Wpg. I kept thinking that it was just a concussion and told Dennis to phone his boss since they were going to probably keep him in over night for observation and it wasn't until we got to Headingly that things started to fall into place for me. By the time we hit the perimeter the penny dropped and I understood that Sam was shot in the head and we had to get to the Children's Hosp. RIGHT NOW!
We had a great surgeon that not only spoke to us about what to expect with Sam after the surgery, but he took time to talk to Sam and find out what all he was 'into' and he spoke with him for a bit. Sam was in surgery for alot longer than what they were anticipating but they had alot of cleaning up of the wound to do. But he was out that night and Dennis and I spent those hours sitting in the waiting room with Pastor Dean and Pam (his wife) watching a silent t.v. and tryig to not focus on what the doctor had told us to possibly expect. (I wont go into those expectations-- it suffices to say that it was not going to be an easy row to hoe).
Sam was moved to PICU and for then following few days he was in and out of it -- naturally, as they didnt want to medicate him too much so they could get true brain readings. But when he was 'awake' he would sign to us "I love you" and a thumbs up for "I'm ok". It was in PICU that we discovered his apnea... which we are still having to deal with.
By Friday of that week Sam was moved to a regular ward and was well on his way to recovery.. and the rest is HIS-story...
We eventually learned from BOTH Josh and Sam what had actually happened. Here it is:
Josh and Sam were going out to 'clean up' the birds from the barn for Grandpa (and for some moving target practice I am sure!) Sam was using a .22 caliber rifle that was new to him in the respect that it had a scope on it. Sam had learned how to shoot a gun with both eyes open and to use the barrel of your gun to line up your target. There was a bird in Sam's sights and he loaded and cocked his gun to shoot it. As he brought up the .22 to aim and probably misjudged the distance of the gun (since he was not used to shooting one with a scope) and it hit his head and dazed him. This dazing would have resulted in him dropping the gun (possibly hands going numb) and as it hit the ground it discharged at the same time as Samuel fell over from being dazed... thus being shot in the head with the .22. When Josh saw this he ran for the house to get the grandparents and Sam then GOT UP, picked up his gun, carried it in a safe 'travel' manner and proceeded to walk to the house. Grandma and Grandpa met Sam at the door and took him in to clean him up (at this point no one knew he had been shot-- they thought he had been hit in the head with the scope of the gun) When Grandpa stared to clean him up he knew what had happened and he got everyone to the car and rushed to the hospital. Sam was conscience the ride there (but he doesn't remember it) and it was after he was in the hospital that he became paralyzed on the left side.
During this time I was called by Dennis to say that Sam was at the hospital and could i pick him up (still thinking hit by scope) and I got there in time to see them wheeling him out of xray with Grandpa. When I got to them both Sam was covered in blood and he looked up to me and said in a slow garbled way "I hurt my head mom". I was shocked to say the least and the rest of that day is a blur. I do remember calling my friend to see if she could come and get Hannah and Ike since we thought we were going to Brandon, and I think she called Pastor Dean. I know called Dennis and told him that they were going to be taking Sam to Brandon ... i made a few other calls to my mom and to my friend again and then everyone was there. The kids were all crying, our Dr. was reassuring me that things were going to be ok and Dennis and I were on our way to get teh car filled with gas before heading out to Winnipeg.
I know that God interceded for the ride to Wpg. I kept thinking that it was just a concussion and told Dennis to phone his boss since they were going to probably keep him in over night for observation and it wasn't until we got to Headingly that things started to fall into place for me. By the time we hit the perimeter the penny dropped and I understood that Sam was shot in the head and we had to get to the Children's Hosp. RIGHT NOW!
We had a great surgeon that not only spoke to us about what to expect with Sam after the surgery, but he took time to talk to Sam and find out what all he was 'into' and he spoke with him for a bit. Sam was in surgery for alot longer than what they were anticipating but they had alot of cleaning up of the wound to do. But he was out that night and Dennis and I spent those hours sitting in the waiting room with Pastor Dean and Pam (his wife) watching a silent t.v. and tryig to not focus on what the doctor had told us to possibly expect. (I wont go into those expectations-- it suffices to say that it was not going to be an easy row to hoe).
Sam was moved to PICU and for then following few days he was in and out of it -- naturally, as they didnt want to medicate him too much so they could get true brain readings. But when he was 'awake' he would sign to us "I love you" and a thumbs up for "I'm ok". It was in PICU that we discovered his apnea... which we are still having to deal with.
By Friday of that week Sam was moved to a regular ward and was well on his way to recovery.. and the rest is HIS-story...
Friday, March 13, 2009
No news is good news... well maybe not
There is not much new to report here on the home front. Sammi's weight is STILL 103lbs... no gains but no losses either!
I have been sick this week but also busy with talking with the lady in Winnipeg who co-ordinates our appointments- Gail. He has been trying to get me some answers to things and some help where we can! We are trying to not only educate ourselves these days on everything that has happened and IS happening with Sam but we are trying to get the school to help out too! Last night was Student-lead conferences (please dont get me started on these...) and we spoke to a few teachers about watching for Sam. This week he came home not just pale but WHITE! This means he is exhausted and cant cope! I was shocked when he walked thru the door! My first thot was why no one called to tell me to come and get him! (Sam doesnt know when he is tired at this point-- he can tell me when he has a headache since it is an actual physical pain--but being fatigued is not something he recognizes and needs prompts to help him to recognize this!!) When Sam is pale, slurring words, 'half'smiling, dragging his left foot or not using his left arm, the left side of his face is slack (like that of a stroke patient) OR is talking really fast... it means he is tired and i need to take him home and get him to bed! ANd since he doesnt know when he is like that, we rely on the school to help us and check in with him! He will deny that he is tired most times but the physical signs cant be ignored by a teacher.... soooooooooooo we are waiting for the physc. eval to get here so we can go to the teachers again and see what is new that they are seeing and what is happening there daily!
There is so much that is not happening to help Sam get better that I am frustrated to no end! He gets no gym time at school since he cant participate in the regular gym class (still tomuch of a risk for him), so he is doing mental work all the time-- kind of ironic for a kid with a BRAIN INJURY! He was playing the trombone again in band (which is too heavy for him to hold up-- on the left side...) so we asked him to be changed to the drums again (common sense would say to not give the child a large cumbersome instrument so he is tired for the rest of the day of school). Like i siad i could go on and on but then i would just sound like i am whining and I am not waing to sound like that, i just want Sam to get better.
Most people see him and think he is doing great-- well he is physcially to a point (not gaining weight is a good thing to point out here) but he is still healing and we may not know the full extent of his injuries until he is out on his own and living in the world -- where his days are not so structured with parents and teachers telling him what to do. Makes the future seem so long some days...
Also Sam's dream of football is not a realistic one -- at least not this year. He is not to a weight that is safe for him. We havent told him yet and when we do I am sure he will be upset. I just pray it doesnt set him back.....
I have been sick this week but also busy with talking with the lady in Winnipeg who co-ordinates our appointments- Gail. He has been trying to get me some answers to things and some help where we can! We are trying to not only educate ourselves these days on everything that has happened and IS happening with Sam but we are trying to get the school to help out too! Last night was Student-lead conferences (please dont get me started on these...) and we spoke to a few teachers about watching for Sam. This week he came home not just pale but WHITE! This means he is exhausted and cant cope! I was shocked when he walked thru the door! My first thot was why no one called to tell me to come and get him! (Sam doesnt know when he is tired at this point-- he can tell me when he has a headache since it is an actual physical pain--but being fatigued is not something he recognizes and needs prompts to help him to recognize this!!) When Sam is pale, slurring words, 'half'smiling, dragging his left foot or not using his left arm, the left side of his face is slack (like that of a stroke patient) OR is talking really fast... it means he is tired and i need to take him home and get him to bed! ANd since he doesnt know when he is like that, we rely on the school to help us and check in with him! He will deny that he is tired most times but the physical signs cant be ignored by a teacher.... soooooooooooo we are waiting for the physc. eval to get here so we can go to the teachers again and see what is new that they are seeing and what is happening there daily!
There is so much that is not happening to help Sam get better that I am frustrated to no end! He gets no gym time at school since he cant participate in the regular gym class (still tomuch of a risk for him), so he is doing mental work all the time-- kind of ironic for a kid with a BRAIN INJURY! He was playing the trombone again in band (which is too heavy for him to hold up-- on the left side...) so we asked him to be changed to the drums again (common sense would say to not give the child a large cumbersome instrument so he is tired for the rest of the day of school). Like i siad i could go on and on but then i would just sound like i am whining and I am not waing to sound like that, i just want Sam to get better.
Most people see him and think he is doing great-- well he is physcially to a point (not gaining weight is a good thing to point out here) but he is still healing and we may not know the full extent of his injuries until he is out on his own and living in the world -- where his days are not so structured with parents and teachers telling him what to do. Makes the future seem so long some days...
Also Sam's dream of football is not a realistic one -- at least not this year. He is not to a weight that is safe for him. We havent told him yet and when we do I am sure he will be upset. I just pray it doesnt set him back.....
Wednesday, March 4, 2009
Andy... You will be missed
Andrew Robert (Andy) Martin
On February 25, 2009 in his 40th year. Beloved husband and soul mate of Barbara Ruth (nee Mayberry). Much loved son of Susan & step son of Bill Rothernel. Dear brother of Jeff (Shelley), much loved son in law of Elizabeth and the late Glen Mayberry. Beloved uncle of Erika and Jake. Predeceased by his father William Robert (Bob) Martin (1995). Andy will be truly missed by his large, extended family, his many friends and his animal companions, Valour and Willow. Cremation has taken place. Arrangements entrusted to TRANQUILITY BURIAL & CREMATION SERVICES INC. 276 St. Paul Ave. Brantford (519)757-1654. A celebration of Andy's life will be held on Friday March 6th at 3:00 p.m - 6:00 p.m. at Sydenham United Church , 120 Sydenham St. Brantford. In lieu of flowers donations to the Brantford Humane Society, the Brantford Food Bank, Animal Rescue or the Stedman Hospice would be appreciated.
My cousin, Andy, passed away last week. He was a great guy! He was the one person in the room who would make everyone laugh and then keep you all smiling the rest of the day. He is going to be missed by alot of people and he has left a hole in our family that will never be filled.
The fight is over and now you can rest.
Tuesday, March 3, 2009
how much!??
Josh, Sam and I went into Brandon for orthodontist appointments today. Josh was just for his monthly check-up but Sam was to see if he was ready for his braces.... and it is a go. On April 14 i will drop him off, he wil get his braces and i will be expected to pay the bill of justunder $4900.00 !!!!!!!!!!!! and that is with the 'discount' of our second child to have braces. (i asked if we would get $800.00 when isaac goes for his and $1200.00 when hannah goes in-- they laughed at me!) i didnt think it was so funny.... My 'happy thot' about the $4900.00 is that if it helps Sam with his sleeping (he has sleep apnea) then it will all be worth it.
We did a weigh in with Sam last night too and again he is down a pound! I cant for the life of me figure out why this kids isnt gaining weight! Maybe the doctor can help me with it at our next appointment.
Another sunny spot in my world is that i spoke with the co-ordinator of the Oaks Division (the area at the HSC that Sam falls under in Wpg). I told her of our 'issues' and what we see and she told me that it is all normal behaviour for people with a frontal lobe injury! I was so happy to hear that (it means i am NOT crazy! well not crazy in that area anyway!lol) She was going to bring up Sam's case to doctors today in a weekly meeting and hopefully we wouldhear back and get some help. i am not going to get my hopes up too high about this but it sure was nice to hear. She said she was upset to hear that we are having to educate ourselves on Sam's injury and what we are experiencing. She feels that the medical profession and the school system could be doing more to help us.... so we shall see if anything comes of it!
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