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
Wednesday, March 31, 2010
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
Thursday, March 18, 2010
So, Jack is sitting here learning how to use Julia's Talker! That is great! He is so smart, he will be able to help her use it once he catches on, which will be in about an hour....he is so great with her! he said he was very excited about the talker because he wanted to use it so he doesn't have to talk anymore.....i think if this is the case - that computer voice might drive me mental and the 8Kish device would be thrown out into the snow! haha! totally kidding......
We had an appt with our new physiatrist today - susan gallagher at childrens.....we are going to schedule some botox injections in her leg (two or three spots) to see what kind of response we get - under general anesthesia (well - gas mask if possible)......probably in the next couple of weeks. It is supposed to loosen up her tight muscles which are causing an internal rotation of her leg which may lead to necessary surgical correction of her hip and tibia (knee). Going the botox route first before major surgery is considered. Hip x ray is ordered....just have to schedule it. She is also going to be evaluated by neuro-psych for behavioral issues and learning ability assessment...will let you know when I get her in there. She also has to get refitted for a new brace soon. Will let you all know how all that goes.
Thanks for your continued support........this is tough stuff.....but i had a real nice conversation with two of my co-workers today (can you believe there are THREE of us with brain injured children in the same vet hospital?? amazing....people are brought together for a reason)....I don't feel so alone in some of the feelings i have - as these two other mom's shared many of my sorrows and sentiments....thank you to Shana and Laticia......you guys have done this longer than me - especially, you, Laticia - 21 years....wow....and still sane! :) And, Shana - I think you get where I am coming from. We LOVE those kids.
susan
We had an appt with our new physiatrist today - susan gallagher at childrens.....we are going to schedule some botox injections in her leg (two or three spots) to see what kind of response we get - under general anesthesia (well - gas mask if possible)......probably in the next couple of weeks. It is supposed to loosen up her tight muscles which are causing an internal rotation of her leg which may lead to necessary surgical correction of her hip and tibia (knee). Going the botox route first before major surgery is considered. Hip x ray is ordered....just have to schedule it. She is also going to be evaluated by neuro-psych for behavioral issues and learning ability assessment...will let you know when I get her in there. She also has to get refitted for a new brace soon. Will let you all know how all that goes.
Thanks for your continued support........this is tough stuff.....but i had a real nice conversation with two of my co-workers today (can you believe there are THREE of us with brain injured children in the same vet hospital?? amazing....people are brought together for a reason)....I don't feel so alone in some of the feelings i have - as these two other mom's shared many of my sorrows and sentiments....thank you to Shana and Laticia......you guys have done this longer than me - especially, you, Laticia - 21 years....wow....and still sane! :) And, Shana - I think you get where I am coming from. We LOVE those kids.
susan
Tuesday, March 16, 2010
A new beginning...
This post is from Shawn...
So, we have now settled in the new home. It has been a very long, challenging and interesting journey - and not just the house moving! But as tough and furstrating as it can be and has been, it is equally rewarding. We are still busy unpacking and wrapping up things at me and Susans' previous residences, but we are finally making a home for our family. I want to thank everyone who helped make this happen; it was very hard. But I really want to say thank you to Susan, Jack, and Julia. They have taught me more about patience, strength, and love in 2 years than I think I learned in my previous 36. I feel truly blessed and as though my life has such an amazing purpose and path. Julia's progress over the last 2 years has convinced me that there are miracles and that the Lord does indeed work in mysterious ways. Love and God Bless, Shawn
So, we have now settled in the new home. It has been a very long, challenging and interesting journey - and not just the house moving! But as tough and furstrating as it can be and has been, it is equally rewarding. We are still busy unpacking and wrapping up things at me and Susans' previous residences, but we are finally making a home for our family. I want to thank everyone who helped make this happen; it was very hard. But I really want to say thank you to Susan, Jack, and Julia. They have taught me more about patience, strength, and love in 2 years than I think I learned in my previous 36. I feel truly blessed and as though my life has such an amazing purpose and path. Julia's progress over the last 2 years has convinced me that there are miracles and that the Lord does indeed work in mysterious ways. Love and God Bless, Shawn
Thursday, March 11, 2010
BIG DAY TODAY!
Please pray for my family today - its a big day.
Today at 10am, I am going to court against my former landlord who owes me close to $10K for not returning my deposit when I moved out of Parker almost two years ago. I have learned of many bad things this person has done to others in the last week or so, and really hope my contempt of court charge goes through today - not only for what he has done to me and my family, but also for what he has done to those in Arizona and to the 75 creditors listed in his bankruptcy papers that I just received a week ago - though he did not list me as a creditor. We will see. I may have no recourse because of the bankruptcy, but at least today I will know if this is OVER - i have been fighting this since Jan 2, 2009.
THEN, much more importantly, the Life Care Planners from the government are coming out today. We have a lot of talking to do. They are meeting us here at the house at 2pm-4pm, then we are all going to meet with Julia's Physical Therapist at 5pm. Then tomorrow, we are all going to Julia's special needs preschool so they can observe her interactions and abilities. Afterwards, we will meet with Julia's Augmentative Communication therapist. Lots to discuss there as well. After the visit, Julia's Life Care Planner, Roberta will go back and forth with the governments Life Care Planner, and they will come to some agreement on Julia's future needs and funds for these needs. This is it - folks. What I have been fighting for and preparing for for three years now. Today.
After the visit with the government is over, its time to MOVE! We are moving into a new rental house (with a possible lease purchase - depending on what happens to my credit with the whole foreclosure vs short sale thing on the house is Florida). We can start moving the big stuff tomorrow and should be in the new home by Sunday night. Lots to do! The house was picked out primarily for Julia and her needs. It has a large study area downstairs that is going to be turned into her "therapy room" where we can put all her equipment she should get from the settlement and set it up so that she can do her therapy at home, rather than having me and others drive her here and there weekly for hours of treatments. Jack is very excited about his new room - the colors - well, lets just say it is a "boys room" and HE loves it! I do feel bad for him, though, as he will have to change schools again once second grade comes around. Mercifuly he is a very resiliant child and will adjust quickly I am sure.
Well, time to get my documents together for court, then get the kids to the sitters, then meet with the Life Care Planners. Wish us luck and blessings. Never thought this is where my life would end up - but it is what it is and I am lucky to have as much as I do - especially the support of most of my family and friends.
GO JULIA! Today - its all about YOU!
LOVE YOU GIRL!
mom
Today at 10am, I am going to court against my former landlord who owes me close to $10K for not returning my deposit when I moved out of Parker almost two years ago. I have learned of many bad things this person has done to others in the last week or so, and really hope my contempt of court charge goes through today - not only for what he has done to me and my family, but also for what he has done to those in Arizona and to the 75 creditors listed in his bankruptcy papers that I just received a week ago - though he did not list me as a creditor. We will see. I may have no recourse because of the bankruptcy, but at least today I will know if this is OVER - i have been fighting this since Jan 2, 2009.
THEN, much more importantly, the Life Care Planners from the government are coming out today. We have a lot of talking to do. They are meeting us here at the house at 2pm-4pm, then we are all going to meet with Julia's Physical Therapist at 5pm. Then tomorrow, we are all going to Julia's special needs preschool so they can observe her interactions and abilities. Afterwards, we will meet with Julia's Augmentative Communication therapist. Lots to discuss there as well. After the visit, Julia's Life Care Planner, Roberta will go back and forth with the governments Life Care Planner, and they will come to some agreement on Julia's future needs and funds for these needs. This is it - folks. What I have been fighting for and preparing for for three years now. Today.
After the visit with the government is over, its time to MOVE! We are moving into a new rental house (with a possible lease purchase - depending on what happens to my credit with the whole foreclosure vs short sale thing on the house is Florida). We can start moving the big stuff tomorrow and should be in the new home by Sunday night. Lots to do! The house was picked out primarily for Julia and her needs. It has a large study area downstairs that is going to be turned into her "therapy room" where we can put all her equipment she should get from the settlement and set it up so that she can do her therapy at home, rather than having me and others drive her here and there weekly for hours of treatments. Jack is very excited about his new room - the colors - well, lets just say it is a "boys room" and HE loves it! I do feel bad for him, though, as he will have to change schools again once second grade comes around. Mercifuly he is a very resiliant child and will adjust quickly I am sure.
Well, time to get my documents together for court, then get the kids to the sitters, then meet with the Life Care Planners. Wish us luck and blessings. Never thought this is where my life would end up - but it is what it is and I am lucky to have as much as I do - especially the support of most of my family and friends.
GO JULIA! Today - its all about YOU!
LOVE YOU GIRL!
mom
Tuesday, March 2, 2010
Scary Talk
Today I spoke with Julia's PT and SLT about the attorneys' visit and the "opposing" life care planner that is coming out. I explained how the whole process works to the best of my knowledge. Julia's PT is thrilled with a lot of the stuff she has been doing lately, but today she did mention some of the things that might come up in the future. She metioned that as Julia grows, it is a real possibility that she will need hip surgery, especially if we cannot correct her gate with her braces. She mentioned she might need Botox injections in her ankle if we can't get it positioned correctly with the brace. She mentioned a couple of different surgical techniques that might have to happen in the future. She mentioned a lot of things she is going to talk to the attorneys and life care planner about and I think just wanted to give me a forewarning so I don't "freak out" while they are talking. I wouldn't have publicly "freaked", as I have heard these things before - but not for a long time - so I guess it kinda hurts to know these surgeries, etc, are a real possibility in the future. I just don't want my baby to hurt.
I then spoke with the SLT - language therapist - who is working on the talker with her. She explained to me what she would be saying to the life care planner - and said that, honestly, we DON'T KNOW if Julia will ever speak on her own. She is going to talk to the attorneys about upgrades that will likely be necessary in the future for her talking machines, computers, etc. The good news is that her therapist REALLY thinks Julia is smart. So, other than the nonverbal issue and lack of attention span - it is possible that she could somehow become a "productive" member of society some day. That is good - especially with our friend (haha) Obama in office - especially considering her settlement is in the governments hands...frightening..... I hope she can work somewhere someday doing anything that makes her happy. A doctor, a lawyer - probably not (but maybe!), but even just a job at Walmart or Target stocking shelves....if she enjoys it and is able to earn a "living" for herself I think would really help her self esteem as she gets older. I hope so I hope so!!!!!!!!!
Anyway, enough rambling.....
Julia's favorite thing at therapy today was "What Up" and she throws her head back.
Susan
I then spoke with the SLT - language therapist - who is working on the talker with her. She explained to me what she would be saying to the life care planner - and said that, honestly, we DON'T KNOW if Julia will ever speak on her own. She is going to talk to the attorneys about upgrades that will likely be necessary in the future for her talking machines, computers, etc. The good news is that her therapist REALLY thinks Julia is smart. So, other than the nonverbal issue and lack of attention span - it is possible that she could somehow become a "productive" member of society some day. That is good - especially with our friend (haha) Obama in office - especially considering her settlement is in the governments hands...frightening..... I hope she can work somewhere someday doing anything that makes her happy. A doctor, a lawyer - probably not (but maybe!), but even just a job at Walmart or Target stocking shelves....if she enjoys it and is able to earn a "living" for herself I think would really help her self esteem as she gets older. I hope so I hope so!!!!!!!!!
Anyway, enough rambling.....
Julia's favorite thing at therapy today was "What Up" and she throws her head back.
Susan
Monday, March 1, 2010
Talker~!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Julia's talker arrived at 715 this morning............I was irritated with the early doorbell ring and frickin dog barking, but IT WAS HER TALKER!!!!!!!!!!!!!!!!!!!!!!!!!!! I brought it to work and tried to figure it out today in between appts..........she has therapy tomorrow!!!!!!!!!!!!Its going to happen - we just have to learn..................I will meet her and shawn at speech tomorrow after I drop my car off to get fixed after my car wreck a week ago!!!!!!!!!!!!!! Who cares about the car wreck - WE GOT A TALKER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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