The Light of God surrounds us.
The Love of God enfolds us.
The Power of God protects us.
The Presence of God watches over us.
Wherever we are, God is, and all is well.
Monday, June 29, 2009
Wednesday, June 24, 2009
Therapy today....OUCH!!!
Julia had quite a day in therapy today. First, in PT, her brace (finally) came in. They originally said it would be a short one, but they decided to order the taller one to see how she did with it....if it still rotates her foot in too much, they will cut it down. They brought some shoes to go over the brace, but didn't have the right size....the 8's were too small, and the 10's are HUGE. THey are going to order some 9 wides for her to try....in the 10's she looks like a clown - they are so big, but she did really well with them. She got to ride her favorite bike (Freedom Concepts, I think, makes them). It has a seat with a back that she can be strapped into, and straps to keep her feet on the pedals. She is not real good at pedaling yet......won't use the left leg....but her PT is working on that.........
Then on to OT and Speech. In OT, they casted her right arm today to make a removable cast for "restraint therapy"...where they restrain her right arm and force her to use her left more. Anyway, they put the cast on, let it dry, and then were cutting it off (it will be a removable cast) and they cut her hand pretty good with the cast cutting shears. I knew they did that when she started screaming - they thought she was just fussy because she had to hold still, but I know her cries better than that - she was hurt. They got the cast off, and sure enough, she was bleeding. Not real bad, but I am sure it did hurt. She will be fine, but poor baby. I didn't make too much of a stink about it, as it was an accident and these things happen, but I did feel terrible for her.....
So, starting tomorrow, we're strapping up her left foot and her right hand! She's going to have a happy day in daycare! Sorry Dawn!! :)
I tried reaching Julia's attorney today with some questions regarding a time frame on her settlement, but didn't hear back. The last time we talked he seemed to infer that it would be a while, and that it may be better if we waited even a year or more to settle to see where she is at cognitively as she grows up. Anyway, just waiting to hear back. I want to sign her up at a very structured (and very expensive) school if her settlement will come relatively soon. I will work to pay for it until the settlement if I have to, but just need more info from him. I'm sure I will hear back soon.
Talk to you all later!
Then on to OT and Speech. In OT, they casted her right arm today to make a removable cast for "restraint therapy"...where they restrain her right arm and force her to use her left more. Anyway, they put the cast on, let it dry, and then were cutting it off (it will be a removable cast) and they cut her hand pretty good with the cast cutting shears. I knew they did that when she started screaming - they thought she was just fussy because she had to hold still, but I know her cries better than that - she was hurt. They got the cast off, and sure enough, she was bleeding. Not real bad, but I am sure it did hurt. She will be fine, but poor baby. I didn't make too much of a stink about it, as it was an accident and these things happen, but I did feel terrible for her.....
So, starting tomorrow, we're strapping up her left foot and her right hand! She's going to have a happy day in daycare! Sorry Dawn!! :)
I tried reaching Julia's attorney today with some questions regarding a time frame on her settlement, but didn't hear back. The last time we talked he seemed to infer that it would be a while, and that it may be better if we waited even a year or more to settle to see where she is at cognitively as she grows up. Anyway, just waiting to hear back. I want to sign her up at a very structured (and very expensive) school if her settlement will come relatively soon. I will work to pay for it until the settlement if I have to, but just need more info from him. I'm sure I will hear back soon.
Talk to you all later!
Monday, June 22, 2009
Songs for my baby girl............
1-5-2007, the day we "lost" our original daughter:
Alan Jackson - Sissy's Song
http://www.youtube.com/watch?v=CQy_k3J3rKY
Why did she have to go
So young I just don't know why
Things happen half the time
Without reason without rhyme
Lovely, sweet young woman
Daughter, wife and mother
Makes no sense to me
I just have to believe
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
Loved ones she left behind
Just trying to survive
And understand the why
Feeling so lost inside
Anger shot straight at God
Then asking for His love
Empty with disbelief
Just hoping that maybe
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
It's hard to say goodbye
Her picture in my mind
They'll always be of times I'll cherish
And I won't cry 'cause
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
Don't worry 'bout me
And Today, For the daughter we "gained":
Martina McBride - In My Daughters Eyes
http://www.youtube.com/watch?v=eLS0Y40WwlA
In my daughter's eyes, I am a hero.
I am strong an' wise,
And I know no fear.
But the truth is plain to see:
She was sent to rescue me,
I see who I wanna be, in my daughter's eyes.
In my daughter's eyes, everyone is equal,
Darkness turns to light,
And the world is at peace.
This miracle God gave to me,
Gives me strength when I am weak.
I find reason to believe, in my daughter's eyes.
An' when she wraps her hand around my finger,
Oh, it puts a smile in my heart.
Everything becomes a little clearer.
I realise what life is all about.
It's hangin' on when your heart has had enough;
It's givin' more when you feel like givin' up.
I've seen the light: it's in my daughter's eyes.
In my daughter's eyes, I can see the future.
A reflection of who I am,
An' what will be.
An' though she'll grow an', some day, leave:
Maybe raise a family,
When I'm gone, I hope you'll see,
How happy she made me,
For I'll be there, in my daughter's eyes.
Alan Jackson - Sissy's Song
http://www.youtube.com/watch?v=CQy_k3J3rKY
Why did she have to go
So young I just don't know why
Things happen half the time
Without reason without rhyme
Lovely, sweet young woman
Daughter, wife and mother
Makes no sense to me
I just have to believe
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
Loved ones she left behind
Just trying to survive
And understand the why
Feeling so lost inside
Anger shot straight at God
Then asking for His love
Empty with disbelief
Just hoping that maybe
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
It's hard to say goodbye
Her picture in my mind
They'll always be of times I'll cherish
And I won't cry 'cause
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
Don't worry 'bout me
And Today, For the daughter we "gained":
Martina McBride - In My Daughters Eyes
http://www.youtube.com/watch?v=eLS0Y40WwlA
In my daughter's eyes, I am a hero.
I am strong an' wise,
And I know no fear.
But the truth is plain to see:
She was sent to rescue me,
I see who I wanna be, in my daughter's eyes.
In my daughter's eyes, everyone is equal,
Darkness turns to light,
And the world is at peace.
This miracle God gave to me,
Gives me strength when I am weak.
I find reason to believe, in my daughter's eyes.
An' when she wraps her hand around my finger,
Oh, it puts a smile in my heart.
Everything becomes a little clearer.
I realise what life is all about.
It's hangin' on when your heart has had enough;
It's givin' more when you feel like givin' up.
I've seen the light: it's in my daughter's eyes.
In my daughter's eyes, I can see the future.
A reflection of who I am,
An' what will be.
An' though she'll grow an', some day, leave:
Maybe raise a family,
When I'm gone, I hope you'll see,
How happy she made me,
For I'll be there, in my daughter's eyes.
Saturday, June 20, 2009
Bill of Rights!
"Borrrowed from my friend Pam's Website.....its great and so true!
Several weeks ago another mother posted on her blog a request for parents of children with special needs:
"Lisa got me thinking about a Bill of Rights we, as parents of kids with special needs, are entitled to. I'll start it—please add your "amendments" in comments, and I will put the whole thing together and re-post it. Then we can all print it out, stick it on the fridge and live by it! Or something like that."
This is what she compiled! I think it is great!!!! Both for parents of kiddos with special needs and for those who do not, for a bit of understanding! This is right on! This came from many parents and it is amazing how similar ALL of our thoughts where!!
We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.
Several weeks ago another mother posted on her blog a request for parents of children with special needs:
"Lisa got me thinking about a Bill of Rights we, as parents of kids with special needs, are entitled to. I'll start it—please add your "amendments" in comments, and I will put the whole thing together and re-post it. Then we can all print it out, stick it on the fridge and live by it! Or something like that."
This is what she compiled! I think it is great!!!! Both for parents of kiddos with special needs and for those who do not, for a bit of understanding! This is right on! This came from many parents and it is amazing how similar ALL of our thoughts where!!
We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.
Friday, June 19, 2009
Jack and Julia are back from their visit with their dad. Jack said they had fun. I am glad Jack and Julia got to spend a little time with their dad while he was here in CO visiting his girlfriend, Natalie. Their dad will be here a couple more days, but is busy with Natalie and her graduation. Hopefully he will be available to visit with them again in the next few months. I am thankful Jack got to have a "sleepover" with him, as he talks about wanting to do that all the time. Thank you Mark and Natalie for finding time to see them during your time together.
Susan
Susan
Wednesday, June 17, 2009
Julia had a good session at OT and ST today. Her ST was very excited at Julia's babbling, as she doesn't do this very often. She kept doing her "blah blah bleh bleh blah" thing for Elizabeth. She was quite a character today with both Elizabeth and Erica - we all had a few good laughs.
Julia is excited to see her father tomorrow (she hasn't said so, but when I told her daddy was coming from florida to see her, she grabbed his picture.....) which she later stepped on and broke the glass...but at least she still knows who her dad is! :) I hope she and Jack have a good time tomorrow and friday.
Julia is excited to see her father tomorrow (she hasn't said so, but when I told her daddy was coming from florida to see her, she grabbed his picture.....) which she later stepped on and broke the glass...but at least she still knows who her dad is! :) I hope she and Jack have a good time tomorrow and friday.
Tuesday, June 16, 2009
Again, in shock...
This blog was originally started for close friends and family, and now when you search encephalitis and Julia, and even Autsim, it immediately comes up. I had no idea that my telling my close friends and family about Julia's concession, that all of my most personal issues would soon be out for all to see. I am ok with it, for the most part, as I think Julia's story is important for people to hear. However, there are several internet stories published in which the facts of the case have been twisted around. I am requesting that if you are planning on publishing something, to please get permission from ME first, so that I can approve what you are writing and get the facts straight. I likely will not approve anything at this time, as her case has yet to be settled. This is a very important time for Julia and her family to fight for HER and I will let nothing stand in the way of this. Thank you for your consideration.
To those of you just enjoying her blog and maybe getting something out of it pertinant for your families situation- continue to enjoy! Her story is important and will hopefully help some of you out and bring those of us going through this together.
Thanks
Susan and Julia
To those of you just enjoying her blog and maybe getting something out of it pertinant for your families situation- continue to enjoy! Her story is important and will hopefully help some of you out and bring those of us going through this together.
Thanks
Susan and Julia
Sunday, June 14, 2009
Still in shock....
I am still in shock at the governments decision. I am very thankful, but again, very sad to know that it truly was the vaccine that caused her injury. My emotions go back and forth on an hourly basis. Of course I always "knew" it was the vaccine, even when all the doctors said it was extremely unlikely, even when I would get "the look" from other people I told her story to, strangers, even some friends - I could see they thought I was reaching and just trying to blame her condition on something...anything....but I was not. I have been vindicated. Julia will be supported. My financial life has a chance of coming back from a very bad place.
I also have noticed that her story has been posted on the internet in several areas saying her case was an Autism case that was won. All I can say is that she was never given a diagnosis of Autism. I do not want this to be misunderstood. Her case was decided as an ENCEPHALITIS with resultant brain damage and epilepsy case. I do feel for all of you out there with the Autism diagnosis - I really do, and I hope that Julia's case, in some way will help all of your cases. I will do anything I can to help support your cause. I just do not want her concession to be misunderstood.
Thank you all.
Susan
I also have noticed that her story has been posted on the internet in several areas saying her case was an Autism case that was won. All I can say is that she was never given a diagnosis of Autism. I do not want this to be misunderstood. Her case was decided as an ENCEPHALITIS with resultant brain damage and epilepsy case. I do feel for all of you out there with the Autism diagnosis - I really do, and I hope that Julia's case, in some way will help all of your cases. I will do anything I can to help support your cause. I just do not want her concession to be misunderstood.
Thank you all.
Susan
Friday, June 12, 2009
AMAZING DAY! A MIRACLE HAS HAPPENED!
JULIA WON HER LAWSUIT WITH THE VACCINE INJURY COMPENSATION PROGRAM! THE GOVERNMENT CONCEDED! This means that they agreed that the MMR vaccine caused her encephalitis and resultant brain damage (I mean Marvelous Mind - right Howard!!). This is such a huge, huge, huge help for Julia and my family. The government will reimburse all of her past medical expenses (to her, not to us, which I find a little odd, but OK!) and will pay for all future medical expenses that she incurs from her vaccine injury. I will update as I find out more. Her attorney (Ron Homer and/or Kevin Conway) will be flying out here this summer to evaluate her and her needs with a "life planner" to try to determine what her needs will be. This is HUGE! HUGE! The VICP rarely concedes.....almost never......but they did for her! AMAZING!
Another funny thing to go along with this.....I had just the day before changed my ringtone on my phone to "Its the end of the world as we know it....and I feel fine" trying to find a positive ringtone - accepting the loss of the world as i knew it before she got sick, before my divorce, before i lost my house, and moving forward - and being fine with it....AND NOW - ITS THE END OF THE WORLD AS I KNOW IT - AND I REALLY FEEL FINE! SHE has HELP!!!!! Our struggle is going to be lessened!!!!
Another funny thing to go along with this.....I had just the day before changed my ringtone on my phone to "Its the end of the world as we know it....and I feel fine" trying to find a positive ringtone - accepting the loss of the world as i knew it before she got sick, before my divorce, before i lost my house, and moving forward - and being fine with it....AND NOW - ITS THE END OF THE WORLD AS I KNOW IT - AND I REALLY FEEL FINE! SHE has HELP!!!!! Our struggle is going to be lessened!!!!
Subscribe to:
Posts (Atom)
