Julia's electronic talker is on order and should be delivered in 4-6 weeks via FedEx! Woo Hoo! While it does not solve all of our communication difficulties, it is sure to help somewhat! I am so thankful for Julia's Augmentative Communication Therapist for dealing with most of the paperwork involved with Aetna and Medicaid to make this happen! Thank you Lisa!!!!
I also spoke with Dr Parsons today, Julia's neurologist, as another friend of mine has a child who suffered from viral encephalitis at one year of age, and her Dr told her to expect her daughter to have a shortened life span. I inquired about this as far as Julia goes, as, other than her brain, the rest of her seems quite "healthy"! The good news is that Dr Parsons says she sees no reason why Julia would not live a normal life span! Great news! And great to know as far as planning for her future.
ALSO, something cool happened at work today - we had two reps from Merial (VACCINE reps) come in to talk about how to change protocols from yearly to every three years or more....interesting timing. I asked if they could get me something that listed EVERY ingredient in the vaccines, and they said most of that was "not available" but that they would try.....WHY is all this info private? I know why........anyway, still an interesting thing from work today. We will see where it goes.
Susan
Wednesday, January 27, 2010
Tuesday, January 26, 2010
It's working Julia!!!
So, last night after work, I was spending some time on my facebook account - as usual. I was reading different posts from people who share most of my views on vaccinations - the pro's, the con's, the questions, the potential corruption with Big Pharma and the government, etc....and I got a post from a friend of mine, who, because of Julia and her situation with the vaccine injury, decided to postpone the MMR vaccine in her beautiful daughter. She did not say she was NOT going to EVER do it, which is fine, it is her decision, but because of Julia's story, she has decided to EDUCATE herself about the decision. That is exactly what I am trying to accomplish with this blog and with telling other's Julia's story. I want people to THINK and not just do it because they are "required" for school, or because it is what the dr tells them to do - like I did three years ago. This person is NOT the only one Julia's story has touched. There are two more people at work who are now questioning the vaccinations in their own children. They aren't saying they aren't going to do them, and that is FINE! But they are thinking and EDUCATING themselves about the issue. YIPEE!!! I was in contact with an old friend from Vet School yesterday, someone I haven't talked to in probably a year, who was asking MY ADVICE on vaccinations in her two daughters. I gave her my two cents, and recommended Dr Sears book - The Vaccine Book - to her so she can EDUCATE herself about the issues. IT IS WORKING JULIA! AND, just today, I treated myself to a massage and the massage therapist, for whatever reason, started talking about her two kids (age 12 months, and age 4 years old) and mentioned that she was new to the area, but needed to get her kids in to the pediatrician for their shots. She had scheduled an appointment with a man named Dr Stage - one of my old clients, AND the pediatrician of my friend who is waiting on the MMR vaccine for her daughter. I told the therapist she made a good choice on peds, and told her about Julia's situation, and told her that a friend of mine uses Dr Stage, and told her that as far as I know he is open to parental input on vaccinations. I asked the therapists to also read Dr Sears book and to go into the appointment educated and ready to ask questions - as BOTH her kids are due for the MMR this month. She was very interested and SHOCKED by Julia's story and is going to get the book tonight when she gets off work. We are doing it Julia! We are spreading the word that vaccines are not "Holy Water" and we are getting parents to THINK! That is all I want. If they decide to vaccinate - that is fine with me - not what I would do - but if I just made them THINK - I have accomplished my goal.
THANK YOU JULIA - if this happened to you for no other reason than to open parents eyes, and maybe save just one kid from your experience - we have accomplished a lot!
Love you girl!
Mom
THANK YOU JULIA - if this happened to you for no other reason than to open parents eyes, and maybe save just one kid from your experience - we have accomplished a lot!
Love you girl!
Mom
Tuesday, January 12, 2010
Overwhelmed
Today has been a day of phone calls to bethesda hospital, miami childrens hospital, denver childrens hospital, sky ridge medical hospital, therapy clinics, regular pediatricians, prosthetic offices, physicians who work in the hospitals, radiologists, imaging,(as everything is billed separately)fire and rescue, life flight, air life, attorneys, and life care planners. My brain hurts. It is overwhelming trying to get all the documentation I need to get together for Julia's case. But, as busy as I am, it will get done. I just need to take a deep breath and press on. Soon this will all come to a head and Julia's life will take a very positive turn.
OH, and we taught her how to say cow....sort of.....I asked her what a cow says and said MOO MOO and she immitated it really well! more of an OO OO than a moo, but now when you show her a pic of a cow she says oo or ow.....THAT IS A GREAT STEP JULIA! I received some paperwork in the mail today for her talker that she is being trained on in augmentative communication therapy....its a step in the right direction! The therapist said we could have her electronic talker within a month or within a year - you just never know, but it is in the works! WOO HOO!!! Her therapist is so funny - each week she adds a new symbol on the talker, and today it was "fist pump/bump" because that is julia's new favorite thing to do. We were fist pumping/bumping everything today in therapy....too funny......She also kept communicating that she wanted to make the babydoll dance - but got mad when we made the baby dance "normal".....she wanted the baby to break-dance - a move Shawn showed her with the babydoll last week...too funny.
Julia is a very spirited little girl and her sense of humor emerges more and more everyday. What a trooper.
Susan
OH, and we taught her how to say cow....sort of.....I asked her what a cow says and said MOO MOO and she immitated it really well! more of an OO OO than a moo, but now when you show her a pic of a cow she says oo or ow.....THAT IS A GREAT STEP JULIA! I received some paperwork in the mail today for her talker that she is being trained on in augmentative communication therapy....its a step in the right direction! The therapist said we could have her electronic talker within a month or within a year - you just never know, but it is in the works! WOO HOO!!! Her therapist is so funny - each week she adds a new symbol on the talker, and today it was "fist pump/bump" because that is julia's new favorite thing to do. We were fist pumping/bumping everything today in therapy....too funny......She also kept communicating that she wanted to make the babydoll dance - but got mad when we made the baby dance "normal".....she wanted the baby to break-dance - a move Shawn showed her with the babydoll last week...too funny.
Julia is a very spirited little girl and her sense of humor emerges more and more everyday. What a trooper.
Susan
Tuesday, January 5, 2010
Three years ago today.....
Three years ago today. Mark ran into the room with Julia covered in feces, vomit, white as a ghost, eyes looking in opposite directions, body arched, looking like she had died.
I had just gotten out of the shower. I looked at her horrified, and then I went into shock mode. Mark said dial 911. I said, "can't I just take her to the doctor later on my lunch hour"??!?!?!?!(shock). Mercifully he still had his wits about him, unlike myself in that moment, and I did as he asked and called 911. They asked if she was breathing. I couldn't tell. The ambulance arrived (after much confusion about whether it would be the city or county ambulance - REALLY???). They tried rectal valium. Didn't work. They tried getting an IV. Couldn't. They tried to take her temperature figuring this was a febrile seizure - they had no themometer......They loaded her on the ambulance - i went with her, hair still wet from shower, wearing a t shirt and boxers. I called work to tell them I might be "late" that day.(?!?!?!?!?!? shock) Julia was intubated as her oxygen level had dropped extremely low and she wasn't breathing well. Thats when my senses came back and I called my mom. I went into hysterics. My baby was trying to die. I went numb. And in many respects I still am.
She was taken to the nearest hospital - Bethesda in Boynton Beach, Fl. They tried to stabilize her. They were unable to stop her seizures. She was put into a medically induced coma to stop the convulsions, but her brain was still seizing. They did a CT scan. Unremarkable results. They recommended transfer to Boca West Medical (ironically - where she was born). Mark declined this. He wanted her at the best hospital possible. So life flight was called to air transport her to Miami Children's Hospital. The helicopter would be there within the hour. Mark took Jack to Daycare - the hospital was not the place for a three and a half year old. I went home to get some clothes for the trip. I remember racing back to the hospital in the minivan - driving close to 100mph on 35 mph streets. I wanted to be with my baby. I got back. The helicopter arrived. She and I were loaded onto the helicopter - signing waivers (that she may not make it alive to Miami and that we would not hold the helicoptor company responsible, etc...) I signed whatever they put in front of me and off we went. We arrived on Friday afternoon - Friday afternoons are not the best time to arrive in PICU - everyone wants to go home. A neurologist was called in eventually. And then the circus began. "She will be fine in a few days"...."she might not make it"....."we don't know exactly what is wrong"....."were there any toxins"....."it would be VERY unlikely for it to be the vaccine" (and my search began)......"did she have a fever"....."did she fall or suffer a blow to the head"....."its likely a virus" (we now know which virus - MEASLES FROM HER VACCINE).......we will do an MRI "later" when we can"........."go get some rest" (RIGHT).........."the MRI IS NORMAL (said by the nurse)........"we need to talk privately about the MRI (said by the dr) "the results are not good".........the rest is history.
Three years....as I tossed and turned last night I couldn't believe it has only been three years. It feels like 30, or 300. I am serious. Last night I truly couldn't believe how long a time period it seems since all this happened, but three years is just a blink of an eye. This is GREAT because it HAS only been 3 years. Though I feel like we have done soooo much in this three years - we have LOTS of time to do MORE and she has LOTS of time to get better. This morning I was depressed at speech therapy because its been three years of speech therapy and she still has no words...but its ONLY been THREE years! So much time for improvement. SO many different things to try assuming we can find the funding to do so. So, it is a sad day, but hey, its only been three years.
So, enough rambling about it. She is who she is, and I love her. I cannot get back the girl she once was - all I can do is keep trying to make her the best she can be (which, if this is it - so be it - but I don't think so). She has a lot of potential. She is a fighter. She is smart and someday will be able to show all of us everything she knows. AND, someday she will talk our ear off and we will ask....gosh - remember when she COULDN'T TALK!!! I sure hope so!
Lets keep going, Julia...today is just another day - right! And the beginning of a year that has a lot of promise for you!
Susan
I had just gotten out of the shower. I looked at her horrified, and then I went into shock mode. Mark said dial 911. I said, "can't I just take her to the doctor later on my lunch hour"??!?!?!?!(shock). Mercifully he still had his wits about him, unlike myself in that moment, and I did as he asked and called 911. They asked if she was breathing. I couldn't tell. The ambulance arrived (after much confusion about whether it would be the city or county ambulance - REALLY???). They tried rectal valium. Didn't work. They tried getting an IV. Couldn't. They tried to take her temperature figuring this was a febrile seizure - they had no themometer......They loaded her on the ambulance - i went with her, hair still wet from shower, wearing a t shirt and boxers. I called work to tell them I might be "late" that day.(?!?!?!?!?!? shock) Julia was intubated as her oxygen level had dropped extremely low and she wasn't breathing well. Thats when my senses came back and I called my mom. I went into hysterics. My baby was trying to die. I went numb. And in many respects I still am.
She was taken to the nearest hospital - Bethesda in Boynton Beach, Fl. They tried to stabilize her. They were unable to stop her seizures. She was put into a medically induced coma to stop the convulsions, but her brain was still seizing. They did a CT scan. Unremarkable results. They recommended transfer to Boca West Medical (ironically - where she was born). Mark declined this. He wanted her at the best hospital possible. So life flight was called to air transport her to Miami Children's Hospital. The helicopter would be there within the hour. Mark took Jack to Daycare - the hospital was not the place for a three and a half year old. I went home to get some clothes for the trip. I remember racing back to the hospital in the minivan - driving close to 100mph on 35 mph streets. I wanted to be with my baby. I got back. The helicopter arrived. She and I were loaded onto the helicopter - signing waivers (that she may not make it alive to Miami and that we would not hold the helicoptor company responsible, etc...) I signed whatever they put in front of me and off we went. We arrived on Friday afternoon - Friday afternoons are not the best time to arrive in PICU - everyone wants to go home. A neurologist was called in eventually. And then the circus began. "She will be fine in a few days"...."she might not make it"....."we don't know exactly what is wrong"....."were there any toxins"....."it would be VERY unlikely for it to be the vaccine" (and my search began)......"did she have a fever"....."did she fall or suffer a blow to the head"....."its likely a virus" (we now know which virus - MEASLES FROM HER VACCINE).......we will do an MRI "later" when we can"........."go get some rest" (RIGHT).........."the MRI IS NORMAL (said by the nurse)........"we need to talk privately about the MRI (said by the dr) "the results are not good".........the rest is history.
Three years....as I tossed and turned last night I couldn't believe it has only been three years. It feels like 30, or 300. I am serious. Last night I truly couldn't believe how long a time period it seems since all this happened, but three years is just a blink of an eye. This is GREAT because it HAS only been 3 years. Though I feel like we have done soooo much in this three years - we have LOTS of time to do MORE and she has LOTS of time to get better. This morning I was depressed at speech therapy because its been three years of speech therapy and she still has no words...but its ONLY been THREE years! So much time for improvement. SO many different things to try assuming we can find the funding to do so. So, it is a sad day, but hey, its only been three years.
So, enough rambling about it. She is who she is, and I love her. I cannot get back the girl she once was - all I can do is keep trying to make her the best she can be (which, if this is it - so be it - but I don't think so). She has a lot of potential. She is a fighter. She is smart and someday will be able to show all of us everything she knows. AND, someday she will talk our ear off and we will ask....gosh - remember when she COULDN'T TALK!!! I sure hope so!
Lets keep going, Julia...today is just another day - right! And the beginning of a year that has a lot of promise for you!
Susan
Monday, January 4, 2010
tomorrow
so sorry baby julia...tomorrow is a horror in all of our family's mind. I am still with you and will stick with you forever. this year will prove that all will eventually be ok. I miss who you were but, also, love who you are. you are an amazing little girl and i am so glad you survived your fate three years ago tomorrow (or starting tonight....who knows when you started seizing that night.....). I LOVE YOU!!!!
MOM
MOM
Sunday, January 3, 2010
love this quote i saw on facebook.....
When the world says "give up", hope whispers "try it one more time."
Courage and Honor
Just got back from a movie - went by myself - the kids are with their dad, Shawn is at work, so I went to a movie by myself - something I actually enjoy now and then.
The movie was entitled Blind Side - I knew nothing about it except that my mom and my cousin said it was good, and it was playing at a time that worked with my schedule so I went.
Not to give the whole movie away, but towards the end, the main character had to write an essay to pass his English class so he could go on to college with a football scholarship. Academics were not his best, though he did try. He wrote an essay based off of "The Charge of the Light Brigade". It is as follows......
"Courage is a hard thing to figure. You can have courage based on a dumb idea or a mistake, but you’re not supposed to question adults, or your coach, or your teacher because they make the rules. Maybe they know best but maybe they don’t. It all depends on who you are, where you come from. Didn’t at least one of the six hundred guys think about giving up and joining with the other side? I mean, Valley of Death, that’s pretty salty stuff. That’s why courage is tricky. Should you always do what others tell you to do? Sometimes you might not even know why you’re doing something. I mean, any fool can have courage. But honor, that’s the real reason you either do something or you don’t. It’s who you want to be. If you die trying for something important then you have both honor and courage and that’s pretty good. I think that’s what the writer was saying; that you should try for courage and hope for honor. And maybe even pray that the people telling you what to do have some, too."
I like this "essay", though not as eloquently written as it could have been. Haha....
And little Julia - we have both shown that we have the courage to fight through this life we are going through, and thank you for giving me the honor of leading the way on our journey. We WILL make it through this baby girl!
Susan
The movie was entitled Blind Side - I knew nothing about it except that my mom and my cousin said it was good, and it was playing at a time that worked with my schedule so I went.
Not to give the whole movie away, but towards the end, the main character had to write an essay to pass his English class so he could go on to college with a football scholarship. Academics were not his best, though he did try. He wrote an essay based off of "The Charge of the Light Brigade". It is as follows......
"Courage is a hard thing to figure. You can have courage based on a dumb idea or a mistake, but you’re not supposed to question adults, or your coach, or your teacher because they make the rules. Maybe they know best but maybe they don’t. It all depends on who you are, where you come from. Didn’t at least one of the six hundred guys think about giving up and joining with the other side? I mean, Valley of Death, that’s pretty salty stuff. That’s why courage is tricky. Should you always do what others tell you to do? Sometimes you might not even know why you’re doing something. I mean, any fool can have courage. But honor, that’s the real reason you either do something or you don’t. It’s who you want to be. If you die trying for something important then you have both honor and courage and that’s pretty good. I think that’s what the writer was saying; that you should try for courage and hope for honor. And maybe even pray that the people telling you what to do have some, too."
I like this "essay", though not as eloquently written as it could have been. Haha....
And little Julia - we have both shown that we have the courage to fight through this life we are going through, and thank you for giving me the honor of leading the way on our journey. We WILL make it through this baby girl!
Susan
Saturday, January 2, 2010
Happy New Year!
Well, 2010 is here. I can only see positive things going forward this year. As I look back on the last year, I realize how far Julia really has come. It was very evident last night when we celebrated her birthday. On the ride over to the restuarant, she was being silly on purpose loving the reaction she was getting from us. We ate our food, she opened her presents - mostly by herself - and then the CAKE! She was NOT content with just one piece - she pulled the cake over to herself and ate it - alternating between her fingers, her fork and her knife. She was so happy!
I am thankful for her progress and thankful for those of you who have helped her along - her friends and family, her doctors, her therapists, my friends, my new friends in similar situations that keep me sane, and many others. Thanks to all of you!
This is a great link on a story of two Colorado kids who got stem cells and their progress. I wish we could raise enough money to do this.....its close to 20K plus travel to another country, as stem cells are not offered here....
http://www.kdvr.com/videobeta/watch/?watch=d203f619-8239-46bf-813c-a7e5a1e70099&src=front
Please copy and paste!
Talk to you all soon! Julia and Jack are with their dad today - hope they enjoy their time with him this weekend!
Susan
I am thankful for her progress and thankful for those of you who have helped her along - her friends and family, her doctors, her therapists, my friends, my new friends in similar situations that keep me sane, and many others. Thanks to all of you!
This is a great link on a story of two Colorado kids who got stem cells and their progress. I wish we could raise enough money to do this.....its close to 20K plus travel to another country, as stem cells are not offered here....
http://www.kdvr.com/videobeta/watch/?watch=d203f619-8239-46bf-813c-a7e5a1e70099&src=front
Please copy and paste!
Talk to you all soon! Julia and Jack are with their dad today - hope they enjoy their time with him this weekend!
Susan
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