Tuesday, April 13, 2010
article on encephalitis......copy and paste....
http://www.cbc.ca/canada/story/2010/04/01/f-encephalitis-research-nervous-system.html
New Pediatrician
Well, i found the ped of my dreams (i think)............i took jack in for his 7 yr check up. Jack is fine - other than some problems with peeing in his pants still - which the dr thinks may be stress induced as they only occur about 3 times a year for about a week.....i thought it was odd that he was only in the 38% in height since his dad is so tall, but he said not to worry. If he doesn't start "sprouting" in height, we will look into it, but he wasn't concerned. He found some issues with his knees, but nothing to worry too much about for now. Likely an inhereted issue that we can't do much about and it isn't bothering him for now. He was able to remove the tube in Jack's ear that has been lingering for 5 years - the last ped wanted me to go to a specialist to get it removed - he got it out in two minutes. Jack (and the new doc) passed his exam with flying colors.
I then mentioned Julia to him, as I have not been that impressed with her former ped. He agreed with the vaccine as the cause of her encephalitis and told me his special interest was developmental delays and wanted her records right away! He attends classes on delays, he is familiar with brain injuries, AND he is familiar with coding, etc, for things with medicaid.
When we left, I got a call on my cell from him, which I missed because i couldn't find my phone, and he said he was leaving the office but wanted me to call him back on HIS CELL PHONE and gave me his number, regarding jack and some meds that might help with his peeing in his pants way to often.
Anyway, very excited about a ped who cares and gets it. He said, "i can understand, to the best ability that I can, what you are going through with julia, but you are the one living it, and i hope i can help you out."
What a great doc! Hard to find these days!
Susan
I then mentioned Julia to him, as I have not been that impressed with her former ped. He agreed with the vaccine as the cause of her encephalitis and told me his special interest was developmental delays and wanted her records right away! He attends classes on delays, he is familiar with brain injuries, AND he is familiar with coding, etc, for things with medicaid.
When we left, I got a call on my cell from him, which I missed because i couldn't find my phone, and he said he was leaving the office but wanted me to call him back on HIS CELL PHONE and gave me his number, regarding jack and some meds that might help with his peeing in his pants way to often.
Anyway, very excited about a ped who cares and gets it. He said, "i can understand, to the best ability that I can, what you are going through with julia, but you are the one living it, and i hope i can help you out."
What a great doc! Hard to find these days!
Susan
Friday, April 9, 2010
Another appointment under our belt!
This afternoon we had yet another refitting for Julia's brace for her left leg.......I think this will be her 7th brace or so since the vaccine injury three years ago....
Anyway, after getting out of work late (really??? how unusual....) I was able to get to the appt early! Julia was a TROOPER this time! Its the first time she actually just sat through the whole casting (well, on my lap) without moving and crying, etc.... She was casted and measured and the new brace should be in within the next three weeks! Good news, it will be a "short" brace, as opposed to the one that went up to her knee that she has had for the last year or so....AND.......NORMAL shoes will (should) fit over it! WOO HOO! Maybe my baby can become a shoe fanatic like her mom! Hopefully shoe shopping will be more fun this time! I would really LOVE for her to be able to wear sandles now and then, especially with summer coming.....
Anyway, I'm real happy with how the appt went.....NO TEARS or accidental cuts on her skin like last time!
susan
Anyway, after getting out of work late (really??? how unusual....) I was able to get to the appt early! Julia was a TROOPER this time! Its the first time she actually just sat through the whole casting (well, on my lap) without moving and crying, etc.... She was casted and measured and the new brace should be in within the next three weeks! Good news, it will be a "short" brace, as opposed to the one that went up to her knee that she has had for the last year or so....AND.......NORMAL shoes will (should) fit over it! WOO HOO! Maybe my baby can become a shoe fanatic like her mom! Hopefully shoe shopping will be more fun this time! I would really LOVE for her to be able to wear sandles now and then, especially with summer coming.....
Anyway, I'm real happy with how the appt went.....NO TEARS or accidental cuts on her skin like last time!
susan
Thursday, April 1, 2010
Success!
Botox and valium at four years old - who would of thunk it....
Everything went fine today - other than I overslept and had 15 minutes to drive to aurora in rush hour! Thankfully, there was little traffice and I was only 15 minutes late....also thankfully, my mother made it on time and let them know I was running behind so they wouldn't cancel her appointment!
The general anesthesia only took about 7 minutes total, and she was up and moving like herself within 45 mintues.....she's a little crankier than normal today, but all in all, pretty much herself!
Now, just the three week wait to see what response we get! I hope it helps some! (A lot). But the doc said not to get too excited too soon - she used very low doses today and it may need to be redone with higher doses depending on how she responds......
Anyway, all in all it went well. Hoping for an early bath and bedtime for all. Stressful day, but all went great!
Susan
Everything went fine today - other than I overslept and had 15 minutes to drive to aurora in rush hour! Thankfully, there was little traffice and I was only 15 minutes late....also thankfully, my mother made it on time and let them know I was running behind so they wouldn't cancel her appointment!
The general anesthesia only took about 7 minutes total, and she was up and moving like herself within 45 mintues.....she's a little crankier than normal today, but all in all, pretty much herself!
Now, just the three week wait to see what response we get! I hope it helps some! (A lot). But the doc said not to get too excited too soon - she used very low doses today and it may need to be redone with higher doses depending on how she responds......
Anyway, all in all it went well. Hoping for an early bath and bedtime for all. Stressful day, but all went great!
Susan
Wednesday, March 31, 2010
Big Day Tomorrow
Well, my mind definately has not been on work today, though I will have been here for 9 hours today. My mind is on tomorrow.
Tomorrow Julia is going in for her Botox injections. How lucky that hers are covered under insurance! Mine aren't!! :) Anyway, just trying to make light of the situation.
Julia is not allowed any food after 10pm tonight, and no liquids after 630am tomorrow. She has to be at the hospital in Aurora at 745am....and her procedure isn't until 945am. Considering we usually appease her crying with snacks and juice, it will be a very loud morning...bring the Ipod! :) Shawn is going to bring his phone so she can watch Dora videos, and hopefully she will stay relatively entertained until anesthesia time.
They are hoping to accomplish anesthesia with just a face mask - but with Julia's sensory issues with things on her face - i do not know how that will go. I KNOW she will have to be held down, arms tied down, legs tied down, to try to accomplish this. If they can't do it this way, she will have to get an IV and be induced. I'm not looking forward to any of it, but luckily she has no idea what is in store for tomorrow.....Well, we will get through it baby girl...mom is always here for you, and Grandma and Shawn will be there tomorrow too. It will be ok. The whole procedure takes maybe 10 minutes - i'm not worried about that part - just the "getting her down" part......
So, say an extra prayer for Julia tonight and tomorrow - mostly that she won't be scared and that she won't have any adverse events during anesthesia, and also that the Botox shots will help her leg!!!!
Susan
Tomorrow Julia is going in for her Botox injections. How lucky that hers are covered under insurance! Mine aren't!! :) Anyway, just trying to make light of the situation.
Julia is not allowed any food after 10pm tonight, and no liquids after 630am tomorrow. She has to be at the hospital in Aurora at 745am....and her procedure isn't until 945am. Considering we usually appease her crying with snacks and juice, it will be a very loud morning...bring the Ipod! :) Shawn is going to bring his phone so she can watch Dora videos, and hopefully she will stay relatively entertained until anesthesia time.
They are hoping to accomplish anesthesia with just a face mask - but with Julia's sensory issues with things on her face - i do not know how that will go. I KNOW she will have to be held down, arms tied down, legs tied down, to try to accomplish this. If they can't do it this way, she will have to get an IV and be induced. I'm not looking forward to any of it, but luckily she has no idea what is in store for tomorrow.....Well, we will get through it baby girl...mom is always here for you, and Grandma and Shawn will be there tomorrow too. It will be ok. The whole procedure takes maybe 10 minutes - i'm not worried about that part - just the "getting her down" part......
So, say an extra prayer for Julia tonight and tomorrow - mostly that she won't be scared and that she won't have any adverse events during anesthesia, and also that the Botox shots will help her leg!!!!
Susan
Sunday, March 28, 2010
Stolen from Suzy's Blog.....how i feel many days.....all us mom's feel this way from time to time......Entitiled "conversation with self"...So glad I have friends who understand, as most never will....
“I want to run away,” I said to Myself.
“Really?” asked Myself to me. “Where do you want to go?”
I answered, “Somewhere. Anywhere. Just as long as it’s far, far away.”
Myself asked, “Why?”
I answered, “Because I’m tired. Physically and mentally. I’m drained.
I want a break from everything. I’m sick of fighting for Suzy to get better. I’m exhausted from worrying about her. I’m tired of therapy and treatments. I’m tired of working my a$$ off. I’m tired of ……suzy.”
Myself said, “That’s a terrible thing to say.”
I said, “I know, and I’m not proud. But sometimes that’s how I feel.”
Myself said, “Well….. you’re entitled to your feelings.”
I said, “I just don’t understand. I thought that if you want something really badly, and you worked very hard, and you were committed and patient, and ‘never gave up’, and ‘stuck with it’, and prayed faithfully to the almighty God..… I thought that you would eventually get it. I thought that was how life was supposed to work. I believed in that theory. I really wanted Suzy to recover, and I have killed myself trying. So - how come it’s not coming true?”
“But she HAS gotten better. She is so much better than when she first woke up from the coma,” Myself said.
“Yes, I agree. But when I look at her I can’t help but see that she is 3 years old; but she has the mind and motor skills of a 6 month old.”
Myself said, “True, but upon waking 2 years ago she was a 0 month old. So, in 2 years she has grown and developed 6 months! That’s a wonderful achievement!”
“Sure, it’s a great achievement for a brain injured child. But, it totally sucks in the real world. She still can’t DO anything! She’s bored and she’s frustrated. She’s cognitive enough to KNOW that she can’t do anything. We’ve tried so many therapies and interventions, and nothing seems to make any significant improvements. Is she not capable of getting much better? Is her brain so damaged that this is the way she will live the rest of her life? Some things have helped a little bit. But I want MORE! I want her future to be rich with possibilities. I want her to be able to entertain herself. I don’t want to entertain her forever. Couldn’t she at LEAST learn to COLOR, for God’s sake?
Myself said, “You sound like you’re not happy with Suzy.”
And I answered, “I am SO happy with her. I wouldn’t trade Suzy for THE WORLD!! I love her more than life itself. But, I would trade in every one of her disabilities.
I am angry at what her brain has done to her. I am angry that her body doesn’t work the way it’s supposed to. I look into her eyes, and I feel that she is hurting. She wants MORE from her brain and her body. She wants me to help her………I am trying so hard......but I just haven’t been able to fix her…..My heart brakes for her and I am disappointed in myself. Mommy is supposed to kiss the boo-boo and make everything ‘all better.’ But this boo-boo is beyond me. I can kiss her, and love her, and keep her healthy and happy. But I am starting to realize that I will NEVER be able to make her 'all better.' And this makes me very sad.
“Really?” asked Myself to me. “Where do you want to go?”
I answered, “Somewhere. Anywhere. Just as long as it’s far, far away.”
Myself asked, “Why?”
I answered, “Because I’m tired. Physically and mentally. I’m drained.
I want a break from everything. I’m sick of fighting for Suzy to get better. I’m exhausted from worrying about her. I’m tired of therapy and treatments. I’m tired of working my a$$ off. I’m tired of ……suzy.”
Myself said, “That’s a terrible thing to say.”
I said, “I know, and I’m not proud. But sometimes that’s how I feel.”
Myself said, “Well….. you’re entitled to your feelings.”
I said, “I just don’t understand. I thought that if you want something really badly, and you worked very hard, and you were committed and patient, and ‘never gave up’, and ‘stuck with it’, and prayed faithfully to the almighty God..… I thought that you would eventually get it. I thought that was how life was supposed to work. I believed in that theory. I really wanted Suzy to recover, and I have killed myself trying. So - how come it’s not coming true?”
“But she HAS gotten better. She is so much better than when she first woke up from the coma,” Myself said.
“Yes, I agree. But when I look at her I can’t help but see that she is 3 years old; but she has the mind and motor skills of a 6 month old.”
Myself said, “True, but upon waking 2 years ago she was a 0 month old. So, in 2 years she has grown and developed 6 months! That’s a wonderful achievement!”
“Sure, it’s a great achievement for a brain injured child. But, it totally sucks in the real world. She still can’t DO anything! She’s bored and she’s frustrated. She’s cognitive enough to KNOW that she can’t do anything. We’ve tried so many therapies and interventions, and nothing seems to make any significant improvements. Is she not capable of getting much better? Is her brain so damaged that this is the way she will live the rest of her life? Some things have helped a little bit. But I want MORE! I want her future to be rich with possibilities. I want her to be able to entertain herself. I don’t want to entertain her forever. Couldn’t she at LEAST learn to COLOR, for God’s sake?
Myself said, “You sound like you’re not happy with Suzy.”
And I answered, “I am SO happy with her. I wouldn’t trade Suzy for THE WORLD!! I love her more than life itself. But, I would trade in every one of her disabilities.
I am angry at what her brain has done to her. I am angry that her body doesn’t work the way it’s supposed to. I look into her eyes, and I feel that she is hurting. She wants MORE from her brain and her body. She wants me to help her………I am trying so hard......but I just haven’t been able to fix her…..My heart brakes for her and I am disappointed in myself. Mommy is supposed to kiss the boo-boo and make everything ‘all better.’ But this boo-boo is beyond me. I can kiss her, and love her, and keep her healthy and happy. But I am starting to realize that I will NEVER be able to make her 'all better.' And this makes me very sad.
Wednesday, March 24, 2010
Appointments, appointments, and more appointments!
So, Julia got her hip X ray done yesterday while at OT and SLT. The tech could not read it, but forwarded it on to Dr Gallagher, so hopefully I will hear back soon - with hopefully good news. I am NOT excited about surgery on Julia's leg.....praying it won't go this route.
The Botox under anesthesia is scheduled for next Thursday morning. They will be doing two to three injections to see if they can loosen up the tight muscles in her leg - and then we will do some pretty intensive PT while the shots are working (about three months) to try to correct her leg and foot position. If this fails.....surgery.
We have an appt friday april 8th for a refitting of her brace for her left foot. The Dr recommended a low brace - just to the ankle, rather than the tall one she has been using. Hope we don't have to go through the 100 pairs of shoes ordeal to try to find one to fit over the brace! That is not real fun. I always pictured Julia and I shoe shopping together, but it turns into a nightmare.....crying, fussing, frustrated - BOTH of us! Haha.
I got a call back from the scheduler for the neuro-psychology department at Children's Rehab. The Dr is out of town until next week, and there is usually a two to three week waiting period to get an appt - so that will be a while. The appt is a 12 hour evaluation. After explaining Julia's situation, the scheduler said we would probably break it into two days for everyone's sanity. So, that's two more "vacation" days I will have to take off from work.
Julia also has a neurology follow up on May 25th. Just a recheck. We may discuss medications to help with attention span, but Dr Gallagher said with brain injuries like Julia's, they don't always work, and may make her more prone to seizures. If this is the case, then, we will not go this route. It was just my thought that if she could concentrate on something for more than 30 seconds, she may be able to learn better. We will see what Dr Parsons thinks in May. We discussed it back in November,and she said that before we considered that, that we try her at the special needs school that I have enrolled her in - she has been there 6 months now, and is somewhat better, but definately not as focused as we all hoped she would get.
I spoke with my boss about all of these appts and evaluations that have been occurring lately - as i have had to take many days "off" for these things. I asked him to let me know if my job was in jeopardy - as all of my "personal" issues are definately affecting my ability to work.....he said I was fine....not to worry about that......and that if it got to that point he would let me know well ahead of time. I am starting to realize why so many mom's of special needs kids do not work full time, or work at all - so many things to do and only so many hours in a day. I hope that someday I am able to go to part time work, but don't see that happening anytime soon. Just trying to schedule all these things on my days off, or just trying to take 1/2 days off to accomplish all this stuff. It is exhausting, but hopefully will be rewarding one day. I love that baby girl.
Susan
The Botox under anesthesia is scheduled for next Thursday morning. They will be doing two to three injections to see if they can loosen up the tight muscles in her leg - and then we will do some pretty intensive PT while the shots are working (about three months) to try to correct her leg and foot position. If this fails.....surgery.
We have an appt friday april 8th for a refitting of her brace for her left foot. The Dr recommended a low brace - just to the ankle, rather than the tall one she has been using. Hope we don't have to go through the 100 pairs of shoes ordeal to try to find one to fit over the brace! That is not real fun. I always pictured Julia and I shoe shopping together, but it turns into a nightmare.....crying, fussing, frustrated - BOTH of us! Haha.
I got a call back from the scheduler for the neuro-psychology department at Children's Rehab. The Dr is out of town until next week, and there is usually a two to three week waiting period to get an appt - so that will be a while. The appt is a 12 hour evaluation. After explaining Julia's situation, the scheduler said we would probably break it into two days for everyone's sanity. So, that's two more "vacation" days I will have to take off from work.
Julia also has a neurology follow up on May 25th. Just a recheck. We may discuss medications to help with attention span, but Dr Gallagher said with brain injuries like Julia's, they don't always work, and may make her more prone to seizures. If this is the case, then, we will not go this route. It was just my thought that if she could concentrate on something for more than 30 seconds, she may be able to learn better. We will see what Dr Parsons thinks in May. We discussed it back in November,and she said that before we considered that, that we try her at the special needs school that I have enrolled her in - she has been there 6 months now, and is somewhat better, but definately not as focused as we all hoped she would get.
I spoke with my boss about all of these appts and evaluations that have been occurring lately - as i have had to take many days "off" for these things. I asked him to let me know if my job was in jeopardy - as all of my "personal" issues are definately affecting my ability to work.....he said I was fine....not to worry about that......and that if it got to that point he would let me know well ahead of time. I am starting to realize why so many mom's of special needs kids do not work full time, or work at all - so many things to do and only so many hours in a day. I hope that someday I am able to go to part time work, but don't see that happening anytime soon. Just trying to schedule all these things on my days off, or just trying to take 1/2 days off to accomplish all this stuff. It is exhausting, but hopefully will be rewarding one day. I love that baby girl.
Susan
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