So, this morning Julia had her neurology follow up. The Dr was very happy with her progress since she saw her six months ago. She discussed repeating an EEG since it has been a long while, but decided it was really a moot point as, she was not going to take her off her seizure meds, as the area of the brain that is destroyed in julia's head is a prime site for seizure formation and since Julia has been seizure free on her meds, she wants to keep her that way. We discussed meds for attention span - as the Dr said that Julia was in her "prime" for learning. She is gauging her at about 18-24 months developmentally - and because julia has been doing some great things with immitation lately, she wants to take advantage of this great window that we have. She said the biggest thing holding Julia back was her attention span - which is about 10-30 seconds......so.......we are going to try some meds. She said she could NOT promise that it would help, but that it might, and that it in no way would make her at more risk for seizures, especially since she is on meds for seizures....so.....we will start her tonight at a very low dose and see how it goes. The appointment went well - Julia was happy for 90% of it and the Dr just commented on how different she was compared to the visit last year. Yeah Julia!
So, then the day kinda spiraled from there......I thought I was supposed to be at work at 1pm...so I rushed around after dropping Julia off at daycare to drop off her prescriptions - for the new med and her seizure meds, as those were running low as well. They asked if I wanted to wait for them, and I just said I would pick them up after work.....I then had a few spare minutes before work - so I took all the medical records that I ordered and paid for since december (over 100 pages just from PT OT ST) (this was a whole nother fiasco to get the records that we don't have to go into - I got them and that's all that matters....) into kinko's to make copies - a copy for the attorneys and a copy for the new pediatrician that is going to start seeing her - i ran the copies into the peds office and tried to make an appt for Julia just to meet the new dr so he could put a face together with all the records. I requested a tuesday - they said he doesn't work on tuesdays......so, I scheduled it on a friday in July that my boss gave me off for july 4th holiday. Then - rushed into work as I was running "late".
I walk into work and everyone just stares at me.............I'm thinking..."what......did I lose my job due to my memo" (those who know - know what I am talking about). Well, it turns out this was my tuesday off.....so I got Julia's medical records in an envelope so I could go back to kinko's and mail them. I get to kinkos - and they need the phone number of the attorneys office for the mailing. I don't have it on my phone. So I call Roberta, the life care planner, she doesn't answer her cell. I called her office - she is out. I begged the woman who answered to google her attorney to get me the phone number and she did. Whew....so, off the records went.
I then went to Walmart to pick up the prescriptions I had dropped off earlier. Well, a whole nother fiasco there! The neurologist had written one of the prescriptions with the wrong dose on it - just a simple "0" missing, but it was definately wrong and the pharmacist would not dispense them due to legalities - which I understand. So I call the neuro department and talk to the nurse about it - we get that all figured out, but they cannot get a hold of the dr to confirm the dose and OK it. The pharmacist and the nurse talked and we all agreed on what the dose was supposed to be and they dispensed me the new meds. BUT, then, on the seizure meds, the dr did not write or initial the "name brand only" part of the script - so, they could not fill that one until she does that, as with medicaid it is considered "fraud" unless the dr specifically states name brand only. I call the neurologist nurse back again.............and they said they were sorry and would get with the dr asap to get it filled. Holy Crap. Why do things that should take 15 minutes take two hours?? I left work at 1:30, and did not get back home til after 3pm just dealing with all of this.....all I wanted to do was watch a movie before the kids came home! Well, maybe I can watch part of one now......whew!
Lets hope the day turns around - my brain hurts!
Keep smiling - all in all, these things were aggravating, but nobody got hurt and tomorrow is another day! :)
Susan
Tuesday, May 25, 2010
Thursday, May 20, 2010
WOW WOW WOW WOW WOW WOW!
Thank you so much to Professional Miracles Foundation for their generous grant for Julia's hippotherapy! I heard of this foundation through my mother's best friend many months ago, but never applied - just busy and figured there were so many other kids "more" deserving than Julia....but, one day at work, I had a spare minute, and went to their website, as Julia's funds for hippotherapy were running very low............I applied, thinking, "well, it won't hurt to ask" and sent in her info. A week later I got a response that they would consider her as a candidate. They asked me how much money I was requesting. I didn't feel right putting a number on it, and just said, "even one session at $60 would be great!". Well, today, about a month later, I got a voicemail - from a number I didn't recognize which is usually never good - and decided to listen to the message. SIX MONTHS of hippo! A grant for SIX MONTHS of hippotherapy once weekly - DONE! WOW! The power of putting yourself out there. Once Julia's settlement hits - hopefully by the end of the year - my hippo out of pocket expense - will be DONE! AND she still gets to go, as this will be covered by her settlement! I am estatic! It is NOT all about the money - as many might think - but, when it comes down to it - this was one therapy that was going to have to go until I got the settlement! And most of you likely saw Julia STANDING on the horse walking around the arena on my last post on facebook. SHE LOVES IT! I am sooooooooooooooooo thankful this will continue. Amazing what these foundations will do for kiddos like Julia! Thank you to all of those out there who really get it! Today was a GREAT day!
Tuesday, May 11, 2010
Closer still!
I got an email tonight (while shawn and I were on our "date" at the potty training for special needs kids lecture) from Julia's Life Care Planner. The Dept of Justice has entered their life care plan for Julia with the vaccine court. Now JULIA'S Life Care Planner and the DOJ Life Care Planner duke it out. Roberta, "our" life care planner, warned me that the questions were going to be coming in in droves over the next few weeks and it is time to finalize ALL out of pocket expenses and make sure we have ALL current medical records to support Julia's case in court. Looks like my "side work" is about to build up - but for Julia - it will be my PRIMARY work. If it gets too crazy, I will take time off of work. I'm sorry, little dog Fluffy, if you have diarrhea today, MY DAUGHTER needs me now!
I was day dreaming of a job at walmart bagging groceries. Shawn says I wouldn't last there, too boring and non-stimulating - but, really, I am ready....if only my finances were! haha! Looks like fluffy will have to continue to support me for now.
The toilet training lecture was AWESOME! AND it was put on by the SAME person that is doing the autism round table that shawn and I are attending! What a small world.
This special needs world is amazing - some of the things they talked about in the lecture tonight were so inspiring - the way people dedicate their lives to potty training the disabled (kids and adults) and the ways the figure out to do it!!!!! Maybe walmart is not my calling....maybe this special needs world is - just need to figure out which part of it......
Susan
Oh, we have IDEAS for Julia and the potty!
I was day dreaming of a job at walmart bagging groceries. Shawn says I wouldn't last there, too boring and non-stimulating - but, really, I am ready....if only my finances were! haha! Looks like fluffy will have to continue to support me for now.
The toilet training lecture was AWESOME! AND it was put on by the SAME person that is doing the autism round table that shawn and I are attending! What a small world.
This special needs world is amazing - some of the things they talked about in the lecture tonight were so inspiring - the way people dedicate their lives to potty training the disabled (kids and adults) and the ways the figure out to do it!!!!! Maybe walmart is not my calling....maybe this special needs world is - just need to figure out which part of it......
Susan
Oh, we have IDEAS for Julia and the potty!
Monday, May 10, 2010
Using Julia's Blog as a Calendar.....
Just trying to keep all these appointments straight...thought I would write them down here...
Tomorrow we have a brace fitting at the main hospital in Aurora at 11am - fourth floor. Then tomorrow night Shawn and I have a "date night" - a toilet training lecture for parents with special needs kids! We are so excited to get out! :)
May 25th, tuesday, we have a neurology follow up with Dr Parsons...can't remember what time, I think in the morning, can't remember what floor - I think fourth - at the main hospital in Aurora. We are going to discuss how the botox is going, talk about restraint therapy (casting her good arm), discuss meds for attention span - the pros and the cons, and remeasure her head to find out if it is growing. I am also going to ask about her hair...it is still so "baby like" - I have no idea if her brain injury and lack of head growth could have something to do with her "non aging" hair....silly I know, but its a question I have!
Also, Shawn and I have been invited to participate in a “coffee table discussion” with Dr. Susan Hepburn, nationally reknown autism researcher from JFK. I explained to the coordinator that Julia is not autistic per se, but that we do experience a lot of the same issues as parents of autistic children. This is on May 29th in the afternoon. This is exciting, as the discussion will be taped and used as a training aide for respite care providers working with kiddos like Julia. The coordinator said she was so excited that there would actually be a man there - when we were contacted, only the mothers' had volunteered their time. Thanks Shawn.
Wednesday, July 28th, we have a 4-7 hour neuropsychology evaluation in aurora at the main hopital at 8:30am til??? I am excited about this as this appointment will tell us about Julia's cognitive functions. I really want to know where she stands. I think she is smarter than many give her credit for, and even if she isn't, I want to know where she stands...so this is exciting!
I think that's it for appointments other than her usual weekly PT, OT, Aug Com, and Hippotherapy....those I can remember!
Susan
Tomorrow we have a brace fitting at the main hospital in Aurora at 11am - fourth floor. Then tomorrow night Shawn and I have a "date night" - a toilet training lecture for parents with special needs kids! We are so excited to get out! :)
May 25th, tuesday, we have a neurology follow up with Dr Parsons...can't remember what time, I think in the morning, can't remember what floor - I think fourth - at the main hospital in Aurora. We are going to discuss how the botox is going, talk about restraint therapy (casting her good arm), discuss meds for attention span - the pros and the cons, and remeasure her head to find out if it is growing. I am also going to ask about her hair...it is still so "baby like" - I have no idea if her brain injury and lack of head growth could have something to do with her "non aging" hair....silly I know, but its a question I have!
Also, Shawn and I have been invited to participate in a “coffee table discussion” with Dr. Susan Hepburn, nationally reknown autism researcher from JFK. I explained to the coordinator that Julia is not autistic per se, but that we do experience a lot of the same issues as parents of autistic children. This is on May 29th in the afternoon. This is exciting, as the discussion will be taped and used as a training aide for respite care providers working with kiddos like Julia. The coordinator said she was so excited that there would actually be a man there - when we were contacted, only the mothers' had volunteered their time. Thanks Shawn.
Wednesday, July 28th, we have a 4-7 hour neuropsychology evaluation in aurora at the main hopital at 8:30am til??? I am excited about this as this appointment will tell us about Julia's cognitive functions. I really want to know where she stands. I think she is smarter than many give her credit for, and even if she isn't, I want to know where she stands...so this is exciting!
I think that's it for appointments other than her usual weekly PT, OT, Aug Com, and Hippotherapy....those I can remember!
Susan
Wednesday, May 5, 2010
Found on Yahoo Encephagroup....Conversation between brain and body....
Hello, I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WW3 and am still not quite all in one piece. That's why I need you. I need you to take care of me.
?
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine: "It's time to get on with life." ?That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me; really listen. Don't shut me out. When I'm getting into trouble I'll need your help more than I ever have before.
?
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse. I'm scared. I'm afraid that you will do that to me.
?
How can I tell you how much I need you now? I need you to accept me as I am today...not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if there is shame, or guilt, in being injured. Silly, huh?
?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this: that I will do my best. What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
?
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die. I want us to live, and breath and be, even if being is not the same as it was.
?
Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
?
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
?
Love,
Your Wounded Brain
?
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine: "It's time to get on with life." ?That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me; really listen. Don't shut me out. When I'm getting into trouble I'll need your help more than I ever have before.
?
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse. I'm scared. I'm afraid that you will do that to me.
?
How can I tell you how much I need you now? I need you to accept me as I am today...not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if there is shame, or guilt, in being injured. Silly, huh?
?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this: that I will do my best. What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
?
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die. I want us to live, and breath and be, even if being is not the same as it was.
?
Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
?
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
?
Love,
Your Wounded Brain
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