Happy birthday to you, happy birthday to you, happy biiirrrtthhhddaaayy to Julia, happy birthday to you!
Can't wait to see you tonight! Hope you are having a good time with your dad and brother and natalie! I know you were excited to see him - it had been a long while!
You've come a long way baby girl - so much in the last year. When I look at pictures from last christmas to this one, i can see your spark coming back. Its a long slow ride we are on, but we will get you back the best we can and will love you no matter what.
I love you baby girl.
Mom
Monday, December 28, 2009
Saturday, December 26, 2009
Three years ago today...my apologies julia....
I know many of you just want to hear positive stuff on Julia's blog. This post is not going to be positive. It is not negative either. It is the reality of what happened this day three years ago today. I have to get it out.
I recall Christmas 2006 not being a really great day. I recall the kid's father and I fighting most of the day - mostly just "cabin fever", "young loud kids" kinda stuff, but I remember it was not the best Christmas either of us had ever had. I remember going to bed upset. I remember waking the next day, having taken the day off work because Julia needed her one year "Wellness" check up and Jack needed a recheck on his ear infection he had just been treated for.
I remember packing them both into the car and driving them to the Doctor's Office - Pediatric Associates in Boynton Beach, Fl. I remember Julia crying in the car - as she never was a great traveler. I remember the headache I had. I remember arriving in the Dr office parking lot, and all the spots in Lot A were full so I had to drive to Lot C to get a spot. I remember pushing Julia in her stroller and holding Jacks hand as we went into the office. I remember checking in and sitting down and waiting. I remember wondering if I should sit in the "sick" waiting area because of Jack's ear, or the "well" waiting area because Julia was fine. I chose the "well" area. I recall the nurse - very attractive, but not friendly - calling us into the back. I remember walking down the hallway to the third room on the left. I recall the conversation the nurse had started as we walked toward the room - she said, "well, we can do julia's wellness exam today, but not her shots as it is two days too early". I remember getting irritated. I remember I was tired, still grumpy from the day before, headache from the car ride over there, irritated about the parking lot. I subtley "snapped" in my mind and told the nurse I would speak to the dr about the vaccines, as I took the day off to bring them both in, and yes, if the dr said it was ok, the vaccines would be given that day.
The nurse exited the room, obviously pissed at me and my attitude towards her (I was suprised at my attitude too! I had never spoken that way to any professional - I don't know what got into me - tired, grumpy, and anxious, as I always disliked holding my children down for their shots, and I had emotionally worked myself up to just doing it and getting it over with.) The dr, Dr Pedro Jakos, entered the room. Very nice man. He checked jack's ear which was fine. He then did julia's wellness exam. She was 100% fine. Meeting all milestones, saying Ah Oh to the dr, saying "ack" to jack all during the appointment. I discussed the vaccine issue with the dr and told him I was a little short with the nurse and apologized to him, but explained that I really didn't think two days would make much difference. Dr Jakos agreed and sent the nurse back in with the vaccines. She spoke no words to me. She gave the hepatitis vaccine first. Julia screamed. Jack came over and rubbed her head. Then the nurse got the MMR-V vaccine, and I swear, jabbed that thing into her left arm so hard that I wanted to push her away. Julia SCREAMED. Jack cried. I cried. The nurse left the room. We all calmed down and off we went. Drove home, put her down for her nap, and assumed all would be fine in the next day or so....likely just a sore arm and a fever from the shots - you know, "normal" reactions.
And then life went on as usual until January 5th.
Julia still has a lump in her arm from where the MMR-V was given. I feel it everyday.
Thanks for listening....just had to get it out...I keep having the visions of it over and over again today. I really hate this day.
I am so sorry Julia. I was just trying to keep you healthy. I didn't know. I am so sorry.
Susan
I recall Christmas 2006 not being a really great day. I recall the kid's father and I fighting most of the day - mostly just "cabin fever", "young loud kids" kinda stuff, but I remember it was not the best Christmas either of us had ever had. I remember going to bed upset. I remember waking the next day, having taken the day off work because Julia needed her one year "Wellness" check up and Jack needed a recheck on his ear infection he had just been treated for.
I remember packing them both into the car and driving them to the Doctor's Office - Pediatric Associates in Boynton Beach, Fl. I remember Julia crying in the car - as she never was a great traveler. I remember the headache I had. I remember arriving in the Dr office parking lot, and all the spots in Lot A were full so I had to drive to Lot C to get a spot. I remember pushing Julia in her stroller and holding Jacks hand as we went into the office. I remember checking in and sitting down and waiting. I remember wondering if I should sit in the "sick" waiting area because of Jack's ear, or the "well" waiting area because Julia was fine. I chose the "well" area. I recall the nurse - very attractive, but not friendly - calling us into the back. I remember walking down the hallway to the third room on the left. I recall the conversation the nurse had started as we walked toward the room - she said, "well, we can do julia's wellness exam today, but not her shots as it is two days too early". I remember getting irritated. I remember I was tired, still grumpy from the day before, headache from the car ride over there, irritated about the parking lot. I subtley "snapped" in my mind and told the nurse I would speak to the dr about the vaccines, as I took the day off to bring them both in, and yes, if the dr said it was ok, the vaccines would be given that day.
The nurse exited the room, obviously pissed at me and my attitude towards her (I was suprised at my attitude too! I had never spoken that way to any professional - I don't know what got into me - tired, grumpy, and anxious, as I always disliked holding my children down for their shots, and I had emotionally worked myself up to just doing it and getting it over with.) The dr, Dr Pedro Jakos, entered the room. Very nice man. He checked jack's ear which was fine. He then did julia's wellness exam. She was 100% fine. Meeting all milestones, saying Ah Oh to the dr, saying "ack" to jack all during the appointment. I discussed the vaccine issue with the dr and told him I was a little short with the nurse and apologized to him, but explained that I really didn't think two days would make much difference. Dr Jakos agreed and sent the nurse back in with the vaccines. She spoke no words to me. She gave the hepatitis vaccine first. Julia screamed. Jack came over and rubbed her head. Then the nurse got the MMR-V vaccine, and I swear, jabbed that thing into her left arm so hard that I wanted to push her away. Julia SCREAMED. Jack cried. I cried. The nurse left the room. We all calmed down and off we went. Drove home, put her down for her nap, and assumed all would be fine in the next day or so....likely just a sore arm and a fever from the shots - you know, "normal" reactions.
And then life went on as usual until January 5th.
Julia still has a lump in her arm from where the MMR-V was given. I feel it everyday.
Thanks for listening....just had to get it out...I keep having the visions of it over and over again today. I really hate this day.
I am so sorry Julia. I was just trying to keep you healthy. I didn't know. I am so sorry.
Susan
Friday, December 25, 2009
Wednesday, December 23, 2009
Almost Merry Christmas!
Its almost here....just two more days!! Santa, Shawn, Grandma, and many others have loaded her up with loot - lots of things i think she will enjoy and will also be therapeutic in a round about way. Still hoping she gets some donations for Hippotherapy at Saddle Up - but we will see. If not, I will continue to send her twice monthly - as she really does enjoy it. Thank you Nora for taking her there on a pretty regular basis, and even rearranging your schedule to make it work for her. Hopefully after the holidays this will continue!
I received a phone call from Julia's school director today regarding an issue that I will not discuss here, as it is the holidays, and the issue is ludicrous(something to do with an "artist" attorney......an artist attorney and special needs school - i don't get it......) but I am glad to have spoken to the director, as the positive side of the conversation negated the stupidity of the reason he called in the first place. He said that he and Julia's teachers and her therapists see Julia as such a joy to work with. She has fit in so well, and is able to participate in most of the activities right along with the other kids! Even her therapist at Children's Hospital commented on how "on" Julia has been during her last 3 weekly sessions that we take her to on tuesdays! I do contribute most of this to the great job Mark Graham and The Rise School are doing for Julia. I am so happy to have found them.
Julia has an appointment for the ABM method this coming Tuesday. It is another alternative treatment that I am hoping to sign her up for - I have heard great things about this! I sent several of you all the link, and my links don't work here - but you can google it http://www.highlandshealthandhealing.com/Anat.htm
She has her initial eval on tuesday, and then we will try to set up some kind of schedule for this - of course the clinic is in denver....so maybe we could set it up after her school lets out at 2:30 if she gets a good nap at school. We will figure it all out......i just hope it helps!
Anyway, Merry Merry to everyone. And a great New Year, too!
Susan
I received a phone call from Julia's school director today regarding an issue that I will not discuss here, as it is the holidays, and the issue is ludicrous(something to do with an "artist" attorney......an artist attorney and special needs school - i don't get it......) but I am glad to have spoken to the director, as the positive side of the conversation negated the stupidity of the reason he called in the first place. He said that he and Julia's teachers and her therapists see Julia as such a joy to work with. She has fit in so well, and is able to participate in most of the activities right along with the other kids! Even her therapist at Children's Hospital commented on how "on" Julia has been during her last 3 weekly sessions that we take her to on tuesdays! I do contribute most of this to the great job Mark Graham and The Rise School are doing for Julia. I am so happy to have found them.
Julia has an appointment for the ABM method this coming Tuesday. It is another alternative treatment that I am hoping to sign her up for - I have heard great things about this! I sent several of you all the link, and my links don't work here - but you can google it http://www.highlandshealthandhealing.com/Anat.htm
She has her initial eval on tuesday, and then we will try to set up some kind of schedule for this - of course the clinic is in denver....so maybe we could set it up after her school lets out at 2:30 if she gets a good nap at school. We will figure it all out......i just hope it helps!
Anyway, Merry Merry to everyone. And a great New Year, too!
Susan
Friday, December 11, 2009
Early Christmas Present!
Julia has been approved for some in home care in the evenings a few nights a week! WOO HOO! Thank you so much Accent on Independence! She will start receiving these services next week! Basically they come into the home, help with her evening therapies, prepare her meals, feed her, bathe her, and get her to bed! This leave me some time to spend with Jack one on one and to get things done that I normally cannot - like filing these mountains of paperwork sitting on my table! Need to get everything organized for the attorney's visit which should be coming in January or February!!!
ALSO, the day after her birthday - 12-29-09, she starts getting free diapers from medicaid! I know this sounds small and silly, but diapers for four years have become very expensive!! This will free up a little money for me to hopefully be able to continue her hippotherapy - maybe only twice monthly instead of every week - but that's better than nothing considering how much she loves it! Her donations are running out from the fund raiser Shawn put together for her last year....I was surprised they didn't run out sooner, but everyone was so generous last year - we made it from february to december! Thanks SaddleUp Foundation for working with her so well - she loves her time with you! Thank you all again!
Julia has been doing great lately at school. She sits in circle time for minutes at a time. She eats at a table without being restrained. She naps on a mat like all the other kids. I am so thankful she is there and hope her progress continues!
Susan
ALSO, the day after her birthday - 12-29-09, she starts getting free diapers from medicaid! I know this sounds small and silly, but diapers for four years have become very expensive!! This will free up a little money for me to hopefully be able to continue her hippotherapy - maybe only twice monthly instead of every week - but that's better than nothing considering how much she loves it! Her donations are running out from the fund raiser Shawn put together for her last year....I was surprised they didn't run out sooner, but everyone was so generous last year - we made it from february to december! Thanks SaddleUp Foundation for working with her so well - she loves her time with you! Thank you all again!
Julia has been doing great lately at school. She sits in circle time for minutes at a time. She eats at a table without being restrained. She naps on a mat like all the other kids. I am so thankful she is there and hope her progress continues!
Susan
Friday, December 4, 2009
T'was the Night Before Christmas....
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure she gets
Just from flapping her hands.
"She needs discipline," they say
"Just a well-needed smack,
You must learn to parent…"
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's like
To live with her conditions...
The struggles and triumphs
Achievements, regressions…
But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
She signed "hello"
She ate something green!
She "told" her first lie!
She did not cause a scene!
She sat on the potty
Who cares if she's four,
She stopped saying the same thing
More, more and more!
Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don't see
Is the joy we can't hide
When our children with brian injuries
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with brain damage
Bring simplicity.
We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with brain damage
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at us
With respect, even shock.
You will realize
What it is we go through
And the next time you judge
We can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that we did
When the tables were turned…….
Written, not by me, but found on an autism website and a little modified......
Susan
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure she gets
Just from flapping her hands.
"She needs discipline," they say
"Just a well-needed smack,
You must learn to parent…"
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's like
To live with her conditions...
The struggles and triumphs
Achievements, regressions…
But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
She signed "hello"
She ate something green!
She "told" her first lie!
She did not cause a scene!
She sat on the potty
Who cares if she's four,
She stopped saying the same thing
More, more and more!
Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don't see
Is the joy we can't hide
When our children with brian injuries
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with brain damage
Bring simplicity.
We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with brain damage
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at us
With respect, even shock.
You will realize
What it is we go through
And the next time you judge
We can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that we did
When the tables were turned…….
Written, not by me, but found on an autism website and a little modified......
Susan
Tuesday, December 1, 2009
In Home Care
The meeting went really well, I think! The nurse seemed impressed with the caregivers that I have found to help with Julia in the evenings and is going to let me know in the next week or so how many hours and how many days Julia qualifies for. One of the caregivers is going to her class on the 9th, which means, starting the 10th, I might have some help around here!! The other two can't get to the class that soon, so I will have to rely on one for a while....but hey, even one night a week to cook, clean, do laundry, play with JACK, watch a movie, etc, is very much welcomed! Julia loves all three of these people and is familiar with them, so it shouldn't be any problem for her either! Woo Hoo! Good for everyone involved!! :)
Dentist
Well, we survived the dentist! Woo Hoo!
The wait in the lobby was interesting. A lady there was trying to have a conversation on her cell phone (sounded like she was talking to her ex-husband to me) and she kept giving Julia, and especially me, the "stink eye" because julia would not stop crying or moving and kept pushing her son (who was about 10 yrs old) away from the video game. I tried to stop all that, but those of you who spend time with Julia, realize that is futile at times. So the lady thought I was a bad parent who couldn't discipline her child, but I knew better and didn't let it get to me too much. So, that was the waiting room episode.
We then went into the room. Julia got on the little chair for about 12 seconds and was then ready to move.....It took me and another assistant to hold her down and restrain her for the dental hygienist to look in her mouth and then polish her teeth. She said from what she could see they look real good! That is great since I can't brush them very well! Then the dentist came in and looked around. He wasn't able to use his instruments to poke at the teeth to look for soft spots, but said from what he could see, they looked good - all things considered. He did say if she ever needed a cavity filled or anything like that - she would need heavy sedation or general anesthesia. Good to know this now as far as her settlement goes - it won't cover routine care, but if anesthesia is required due to her behavior that comes with the brain injury, it will be covered. So, i got that documented today.
It is painful to watch these sorts of things....holding her down like a poorly-behaved dog - that is what I felt like today - i felt like I was at work - and could have used some of my well trained vet techs today! This is stuff I don't think some people understand. Most families take their kid to the dentist and they are done. I have to hold my kid down (and she has to be held down), i have to listen to her scream (and she has to scream because she is scared), and I have to watch her cry and struggle because she is scared and doesn't understand what is going on. It is painful to watch and to have to participate in this sort of thing on a regular basis. Not a pity party here, just a reality that isn't pleasant for me or more importantly HER! Its times like this that sometimes I wish I could just "write a check" and have someone else deal with all of it. But, then again, I would never do that - I will never leave Julia. She needs me to help her through these times - when it was over she grabbed my leg and hung on and it made it better for both of us.
Will let you know how the home health care thing goes later.
Susan
The wait in the lobby was interesting. A lady there was trying to have a conversation on her cell phone (sounded like she was talking to her ex-husband to me) and she kept giving Julia, and especially me, the "stink eye" because julia would not stop crying or moving and kept pushing her son (who was about 10 yrs old) away from the video game. I tried to stop all that, but those of you who spend time with Julia, realize that is futile at times. So the lady thought I was a bad parent who couldn't discipline her child, but I knew better and didn't let it get to me too much. So, that was the waiting room episode.
We then went into the room. Julia got on the little chair for about 12 seconds and was then ready to move.....It took me and another assistant to hold her down and restrain her for the dental hygienist to look in her mouth and then polish her teeth. She said from what she could see they look real good! That is great since I can't brush them very well! Then the dentist came in and looked around. He wasn't able to use his instruments to poke at the teeth to look for soft spots, but said from what he could see, they looked good - all things considered. He did say if she ever needed a cavity filled or anything like that - she would need heavy sedation or general anesthesia. Good to know this now as far as her settlement goes - it won't cover routine care, but if anesthesia is required due to her behavior that comes with the brain injury, it will be covered. So, i got that documented today.
It is painful to watch these sorts of things....holding her down like a poorly-behaved dog - that is what I felt like today - i felt like I was at work - and could have used some of my well trained vet techs today! This is stuff I don't think some people understand. Most families take their kid to the dentist and they are done. I have to hold my kid down (and she has to be held down), i have to listen to her scream (and she has to scream because she is scared), and I have to watch her cry and struggle because she is scared and doesn't understand what is going on. It is painful to watch and to have to participate in this sort of thing on a regular basis. Not a pity party here, just a reality that isn't pleasant for me or more importantly HER! Its times like this that sometimes I wish I could just "write a check" and have someone else deal with all of it. But, then again, I would never do that - I will never leave Julia. She needs me to help her through these times - when it was over she grabbed my leg and hung on and it made it better for both of us.
Will let you know how the home health care thing goes later.
Susan
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