mon. eve.
Just to clarify, Allie has discontinued an a strong anti-seizure medication (per the neurologist), but is taking a different one.
Monday, September 3, 2007
Monday Evening, Spetember 3rd
Once again, what a difference a day makes. One day off medicine and Allie woke up in a great mood and was ready to get back to life. We watched a little TV together this morning - America's Next Top Model. Since the beginning of this eposide or shall I say since Allie has awakened, I have probably watched 150 espisodes of America's Top Model - WOW, what a father will do for a daughter.
Tried to get back to real life as a family again so we all went out to luch (Sushi) and then off to a movie - Mr. Bean's Holiday - I thought is was hilarious and the others also enjoyed it. Then we go home and during dinenr got a call back from a local D.O. who has offered to work with Allie and he wanted to see her tonight, to which Allie was agreeable so she and I loaded up and drove over to his home where he did cranial and energy work on her for about an hour. She loved it and when she got off of the table at the end of the session she looked like a new person.
Tomorrow we have an appointment with the psycologist at Care Partners, the out patient therapy center. You need to be assessed before meeting with the therapists which will be on Friday and we also got the name of a great neurologist right here in asheville so we will call for an appointment tomorrow, also the name of a great physiatrist also in asheville so things are looking up as we will neot be stopping there but looking into the advice of everyone who has written to us. Thank you all so much for your leads and your personal stories, they really help us get though the day sometimes.
So tomorrow is a new day and we will begin all over after a wonderful night of healing.
Love and Recovery
Allie's Dad
Tried to get back to real life as a family again so we all went out to luch (Sushi) and then off to a movie - Mr. Bean's Holiday - I thought is was hilarious and the others also enjoyed it. Then we go home and during dinenr got a call back from a local D.O. who has offered to work with Allie and he wanted to see her tonight, to which Allie was agreeable so she and I loaded up and drove over to his home where he did cranial and energy work on her for about an hour. She loved it and when she got off of the table at the end of the session she looked like a new person.
Tomorrow we have an appointment with the psycologist at Care Partners, the out patient therapy center. You need to be assessed before meeting with the therapists which will be on Friday and we also got the name of a great neurologist right here in asheville so we will call for an appointment tomorrow, also the name of a great physiatrist also in asheville so things are looking up as we will neot be stopping there but looking into the advice of everyone who has written to us. Thank you all so much for your leads and your personal stories, they really help us get though the day sometimes.
So tomorrow is a new day and we will begin all over after a wonderful night of healing.
Love and Recovery
Allie's Dad
Sunday, September 2, 2007
Sunday Night, September 2
Night comes to a close and the tension is palpable. Not between me and nancy or Allie or God but with yourself. How do you go to sleep when all you want to do is continue going in her room to check on her but you can not do that. This is just another path on the road to Full recovery and as she heals, so do we. I don;t know the lessons here and may never but right now I don;t like them - don;t have to I know as I have said many times - I will never leave you and I know that to be true but dang will the day ever come when we don;t worry about this little girl - we know it will but there are times you wonder.
Tomorrow is a great day for a breakthrough.
Allie's Dad
Tomorrow is a great day for a breakthrough.
Allie's Dad
Sunday Evening, September 2
And the test goes on. All arreared well this morning then when Allie woke up we noticed that her face and lipes were swollen and she had broken out in a rash and all we could do was look at each other and go damn. When the heck are we going to catch a break. Nancy was besides herself and quickly looked up the side effects of dilantin and sure enough some of the werious side effects which required you call the doctor were swollen lips and a rash. Now what! We called the pediatric doctor who prescribed the med and he said to just discontinue it and give her some benedryl. Back down the rabbit hole or maybe the universe is just telling us that this child is not supposed to be on medicine. Any how we had to treat it and did.
Tomorrow will be better and we are all greateful to be home.
Allie's Dad
PS - Don't stop prayin
Tomorrow will be better and we are all greateful to be home.
Allie's Dad
PS - Don't stop prayin
Sunday Morning. September 2nd
Early morning, nancy and I sat outside haveing coffee and tea and spoke of how lucky we were and where to go from here.
We listened to the birds sing and were happy
Allie's Dad
PS To the guys at the Roger C. Peace Center - We love you guys, you are the funniest and Mark, you are the best, Allie loves you and so do I.
Say good night Gracie - Good night Gracie
We listened to the birds sing and were happy
Allie's Dad
PS To the guys at the Roger C. Peace Center - We love you guys, you are the funniest and Mark, you are the best, Allie loves you and so do I.
Say good night Gracie - Good night Gracie
Saturday, September 1, 2007
Saturday Evening, September 1
Well we are home and boy are we tired.
I finally decided after reviewing the facts on-line, with confidants, with other patients on the floow, with other people who have had spinal taps, with my own memories of having one and of course in conteplation with God that we were not going to do it on Allie. I had a sick feeling ever since they mentioned it and have not wanted it and no matter how hard I tried to conform to what they wanted, I could not go against myself and my belief in the wisdom of her body and my view of health care mainly because she was asymptomatic; not exhibiting any symptoms which would warrent a spinal tap. If she ever does we will take her to our local emergency room where she can have one done - don;t believe it will ever be necessary. Anyhow my decision did not go well with the pediatric neurologist who promptly said he thought we should seek a second opinion from some other group and basically said since we did not listen to him on this issue that we were dismissed - boo hoo. Wow I have never met a group with bigger or more fragile egos. It seems that if you question or do not immediatley comply that you are labeled as non compliant and dismissed. Actually I can understand and have no hard feeling I am just dazed and confused by the way these guys never sat down with us and explained their thought process, where they thought they were going, what their rational was and what they were going to do it what they had origionall thought did not pan out. Then they had the gall to tell me that I was not doing the right thing by my child when I refused to physically restrain her twice a day, causing her huge amounts of physcological stress which may be the cause of her problem just to give her shots in the stomach at $3,500 a month. Brutal especially because they could not answer my questions as to why they chose that medication and why they immediately chose a six month course of action when there was no visible evidence of stroke and before they got the lab results of her blood back from the Mayo clinic, a week or two maybe but six month? This I thought was an extremely lucid and rational line of questioning yet was taken as being a trouble maker. Call me protective but hey if you have never tried to give a 17 year old tbi patient who has been shot in the stomach 10 or so times already another one and you are not a doctor/nurse figure in a controlled enviromnet with other nurse/doctor figures standing by to help, let me know - to think this can happen is beyond comprehension and then to say to me that hey sometimes parents have to do things to their children for their own benefit is callous and insensative and the remarks of someone who has never done it. Remember, walk a mile in my moccasins.
Anyhow our departure was much like that of Felix Unger, Dah dun da duh da duuuuh, da da da da da daaaa daaaah on September first, Steve Cagen was asked to leave Greenville hospital and to never return, that request came from his pediatric neurologist. A little nostalgic humor for those of you old enough to remember it.
Well we are home and happy and while not worried are ever vigilant to Allie and her condition. We talked (or she did) on the ride home and had a good time. We will be checking her temp. everyday a few times to create a baseline we can moniter. We know a fever is always present with any type of infection, something she has not had (asymptomatic). She is upbeat and so happy to be back in her own bed. She has just taken a bath and we have requested that she not shower for a few weeks since that was when we noticed the episodes would come on.
All in all we are OK with everything and looking forward to getting back on the Full Recovery band wagon. I can not remember who gave me the book The Monk who Sold his Ferrari but thank you, I am really enjoying it and Allie thinks the title is funny.
So with grateful hearts we head off to bed knowing that everything is once again OK and our family is all at home together. I would like to thank my sister Roni for coming up - you came for a visit but got an adventure. I am glad you are home safely.
To everyone reading - God bless and good night.
Allie's Dad
I finally decided after reviewing the facts on-line, with confidants, with other patients on the floow, with other people who have had spinal taps, with my own memories of having one and of course in conteplation with God that we were not going to do it on Allie. I had a sick feeling ever since they mentioned it and have not wanted it and no matter how hard I tried to conform to what they wanted, I could not go against myself and my belief in the wisdom of her body and my view of health care mainly because she was asymptomatic; not exhibiting any symptoms which would warrent a spinal tap. If she ever does we will take her to our local emergency room where she can have one done - don;t believe it will ever be necessary. Anyhow my decision did not go well with the pediatric neurologist who promptly said he thought we should seek a second opinion from some other group and basically said since we did not listen to him on this issue that we were dismissed - boo hoo. Wow I have never met a group with bigger or more fragile egos. It seems that if you question or do not immediatley comply that you are labeled as non compliant and dismissed. Actually I can understand and have no hard feeling I am just dazed and confused by the way these guys never sat down with us and explained their thought process, where they thought they were going, what their rational was and what they were going to do it what they had origionall thought did not pan out. Then they had the gall to tell me that I was not doing the right thing by my child when I refused to physically restrain her twice a day, causing her huge amounts of physcological stress which may be the cause of her problem just to give her shots in the stomach at $3,500 a month. Brutal especially because they could not answer my questions as to why they chose that medication and why they immediately chose a six month course of action when there was no visible evidence of stroke and before they got the lab results of her blood back from the Mayo clinic, a week or two maybe but six month? This I thought was an extremely lucid and rational line of questioning yet was taken as being a trouble maker. Call me protective but hey if you have never tried to give a 17 year old tbi patient who has been shot in the stomach 10 or so times already another one and you are not a doctor/nurse figure in a controlled enviromnet with other nurse/doctor figures standing by to help, let me know - to think this can happen is beyond comprehension and then to say to me that hey sometimes parents have to do things to their children for their own benefit is callous and insensative and the remarks of someone who has never done it. Remember, walk a mile in my moccasins.
Anyhow our departure was much like that of Felix Unger, Dah dun da duh da duuuuh, da da da da da daaaa daaaah on September first, Steve Cagen was asked to leave Greenville hospital and to never return, that request came from his pediatric neurologist. A little nostalgic humor for those of you old enough to remember it.
Well we are home and happy and while not worried are ever vigilant to Allie and her condition. We talked (or she did) on the ride home and had a good time. We will be checking her temp. everyday a few times to create a baseline we can moniter. We know a fever is always present with any type of infection, something she has not had (asymptomatic). She is upbeat and so happy to be back in her own bed. She has just taken a bath and we have requested that she not shower for a few weeks since that was when we noticed the episodes would come on.
All in all we are OK with everything and looking forward to getting back on the Full Recovery band wagon. I can not remember who gave me the book The Monk who Sold his Ferrari but thank you, I am really enjoying it and Allie thinks the title is funny.
So with grateful hearts we head off to bed knowing that everything is once again OK and our family is all at home together. I would like to thank my sister Roni for coming up - you came for a visit but got an adventure. I am glad you are home safely.
To everyone reading - God bless and good night.
Allie's Dad
Saturday Morning, September 1
I can not believe it is September, but I also said that about June, July and August.
Morning time and Allie is still sleeping. She has been so amazing during this process that words can not express the amount of love and admiration both Nancy and I have for her. Never once has she wimpered or complained. She has wanted to go home, as we all do but she has understood why she is here and here level of thought and determination is such that she wants to do whatever it takes to get well. God Bless Her.
I almost stared to write that I was stoping the blog this morning because I was having a hard time being positive but I read many of the e-mails this morning, especially Jen's and it helped me realize that being frustrated is a part of the process and something that goes with the good and that there are many people out there supporting us and cheering us on who want to know how we are and how we are doing no matter the level of frustration because so many of them have their own stories and identify with where we are. You see this is not my world! I do not belong her, I live in a world of wellness - not sickness and my believe is in a higher power, an innate intelligence which controls and coordinates all function in the body. I believe that Allie is fine and in grace and will continue to heal unimpeded by outside influences and that she will go on to reach and live at her highest God given potential.
I am a very protective father and I offer no apologies for that. I have certain belief patterns which I also offer no apologies. I have to go because they are heading to Allie's room but I will be back with great news of the day.
carpe Diem
Allie's Dad
Morning time and Allie is still sleeping. She has been so amazing during this process that words can not express the amount of love and admiration both Nancy and I have for her. Never once has she wimpered or complained. She has wanted to go home, as we all do but she has understood why she is here and here level of thought and determination is such that she wants to do whatever it takes to get well. God Bless Her.
I almost stared to write that I was stoping the blog this morning because I was having a hard time being positive but I read many of the e-mails this morning, especially Jen's and it helped me realize that being frustrated is a part of the process and something that goes with the good and that there are many people out there supporting us and cheering us on who want to know how we are and how we are doing no matter the level of frustration because so many of them have their own stories and identify with where we are. You see this is not my world! I do not belong her, I live in a world of wellness - not sickness and my believe is in a higher power, an innate intelligence which controls and coordinates all function in the body. I believe that Allie is fine and in grace and will continue to heal unimpeded by outside influences and that she will go on to reach and live at her highest God given potential.
I am a very protective father and I offer no apologies for that. I have certain belief patterns which I also offer no apologies. I have to go because they are heading to Allie's room but I will be back with great news of the day.
carpe Diem
Allie's Dad
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