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Re: [avenues2] Juliet Update

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  • MARK & MARY HEINEN
    Hey Tracy, Yes, we are going to Gillette for a second opionion. I wanted to see Dr Koop but he is booked til October so I begged his scheduler to try and get
    Message 1 of 11 , Jun 21, 2010
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      Hey Tracy,

      Yes, we are going to Gillette for a second opionion. I wanted to see Dr Koop but he is booked til October so I begged his scheduler to try and get us in before that. She said she will try and let us know.

      I'm hesitant to disparage any doctor in a public forum like this so am not going to name the Shriner's doctor. Have to say we have been going there for many years and this was the only bad experience I have ever had there.

      Mary

      ----- Original Message -----

      From: TAHARTT@...

      To: avenues2@yahoogroups.com

      Sent: Mon, 21 Jun 2010 08:47:38 -0400 (EDT)

      Subject: Re: [avenues2] Juliet Update

























































      Mary,





      Who was the surgeon you saw? Henry had his neck fused last year and Dr.


      Grupman was great. He is a little cocky but he is good. I have never met a


      rude doc at Shriners but I haven't met them all (yet!).


      Several of my kids did the bracing - not a huge deal. A little harder on


      the older kids as they needed help to get it on and off and it looks bad


      with tank tops. They spent the time in t-shirts and sweat pants.


      If you think the doc has it wrong you can always get a second opinion from


      one of the spinal specialist at Gillette. That is the nice thing about


      being in MN - the twin cities has more orthos than most places have in the


      entire state!





      Good luck!





      Traci Hart-Thomas


      Mom to 8, 2 with AMC, 3 LPs and 2 micro premies





      [Non-text portions of this message have been removed]

















































      [Non-text portions of this message have been removed]
    • Darrin and Jaime Brown
      Mary, Long time no email!! Dylan and Juliet were just babies the last time we emailed! Dylan is 11 1/2 now and never learned to walk. His back and hips
      Message 2 of 11 , Jun 21, 2010
      • 0 Attachment
        Mary,



        Long time no email!! Dylan and Juliet were just babies the last time we emailed! Dylan is 11 1/2 now and never learned to walk. His back and hips always kept him from that, not to mention his Neurogenic origin. Dylan has been braced almost full time (other than laying or swimming) since he was about 3. I imagine he could have done more without the brace, but Dylan lost most of his motion when he had his bilateral hip extension osteotomies at 3 years. He couldn't long sit after that so he lost his "floor scoot" and thus his floor mobility. Remembering where Dylan and Juliet were back then, they could have been twins, but Dylan had those horrible hip contractures and less muscle tone. Anyway, we braced Dylan about 12 hours per day after his failed surgery (failed becuase his PT broke his leg the day after he got out of his body cast). What a waste, but they said Dylan would loose bowel and bladder function if we didn't do the surgery back then. Come to find out 7-years later he had a tethered spinal cord and maybe we could have saved all that hardship and given so much more. If only doctors were perfect, but they are CERTAINLY NOT!!! (Can you tell I am jaded!!!)



        Now at 11-1/2, Dylan is at 78 degrees. If we don't do spinal surgery this year, they say he will never SIT again. Imagine, after watching his back like it was going to do tricks, we now have to have this surgery NOW or he can't even sit!!! Never, did I think we would be here. DUMB doctors!!! (AGAIN, I am jaded)...



        Dylan will have his surgery September 23 @ DuPont Hospital by Dr. Gabos. I can't believe we waited so long as Dr. Gabos said it is required now! I just have to wonder sometimes!!



        A life in a backbrace just stinks! Dylan's shorts and pants are a size 34 mens when they should be a boys large. His tshirts hang off his to fit over his brace and he has to wear a tshirt under the brace to avoid rashing, so he sweats all the time. I don't want to make you more miserable, but it stinks. On the other hand, it is totally worth it to have your child breath, eat without reflux, and have a normal digestive system. Dylan can't eat without reflux, has trouble peeing, thinks he has to go #2 when he doesn't, and is uncomfortable alot of the time. The surgery is necessary for him now, but it runs alot of consequences and risks. I wish we could just adjust to a brace! Dylan will be fused from his neck to and including his pelvlis. A complete spinal fusion. No movement ever again...How does he recover from that??? I guess we just have to be happy he will still be able to sit, and eat, and pee/poop, and breathe!!! I am dreading the surgery and am mad at the doctors, but I am happy there will be life after the surgery! Dylan is a computer wiz and he can continue on that path once he heals! Bracing is not the end of the world for Juliet and surgery is not the end of the world for Dylan. Life goes on...



        On a happy note, Dylan got his service dog, Codie, from CCI (Canine Companions for Independence) 4 weeks ago. Codie is the best, most awesome, most wonderful dog! She is a black lab and I wouldn't trade the grueling 2 week experience at CCI for ANYTHING in this world (or my house full of dog hair!). It changed Dylan's life and mine too!!! Codie can open and close doors, turn on and off lights (unfortunately ours are too high and we have to get extensions), pick stuff up off the floor, bark on command, she sleeps with Dylan, and has become a great companion for Dylan. We went to CCI Northeast on Long Island. It was BEYOND WONDERFUL!!!


        And now, I am beyond tired, so I am going to close here and hope my email makes sense and doesn't have too many typos without checking it over. Good luck Mary!! And to everyone else...Apply for CCI today!!!!



        Jaime Brown

        (mom to Dylan - 11 1/2 with neurogenic AMC)






        To: avenues2@yahoogroups.com
        From: mmajch94@...
        Date: Sat, 19 Jun 2010 09:23:36 -0400
        Subject: [avenues2] Juliet Update






        Hi All,

        Gosh it has been a long time since I've posted. Few things to share:

        Juliet got her service dog in February. Our 2 week training was an amazing experience. Her new dog Tank is just eh best. He has such a gentle demeanor and love to work. She uses him mostly for picking up items she drops, but I've also taught him how to take off my socks (she was to scared to be the guinea pig and is still a bit afraid he will accidentally bite her. I'm very glad we got Tank even though it was a long wait.

        On another not so good note, Juliet was at Shriner's this week and we were told her scoliosis has worsened considerably and we need to take immediate action. They want her to be braced during the entire day except for sleeping and showers and swimming. This is in hopes of pushing out surgery which they seem to think is inevitable.
        The whole appointment was a disaster. We saw the spine surgeon for the very first time and he did not have a good bedside manner. Juliet ended up in tears and I tried my best not to cry, but wasn't so successful. Juliet already has issues with so many things and the brace will create some huge obstacles for her. Not to mention she is already sensitive about people staring at her and now she knows it will be that much worse. She will likely need all new clothes as well (both pants and shirts from what I understand).

        Has anyone else had to deal with the bracing and please let us know what to expect? I also want to know if anyone has had the back fusion surgery and details. This just sucks so much, I'm in a black place right now.

        Mary

        [Non-text portions of this message have been removed]





        _________________________________________________________________
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      • Patty Clarke
        Hi Mary, it does sound a lot to deal with. Like Juliet, I have no upper body strength from the mid chest up. I do have use of my arms from my elbows down but
        Message 3 of 11 , Jun 21, 2010
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          Hi Mary, it does sound a lot to deal with. Like Juliet, I have no upper body strength from the mid chest up. I do have use of my arms from my elbows down but no shoulder muscles. Limited neck and no upper back muscles. I do remember wondering myself with my balance point would be. I used to fling my arms forward and back to wheel my chair and I would fall forward with the movements. After the surgery I know longer fell forward and wheeling my chair became easier as I trained my arms to move in an upright position. It is amazing how my body adapted with a whole new center of gravity.



          My hips are contracted but I was able to sit since I do not walk at all. These are tough decisions, like now I had one hip replacement and it was not the best outcome and now I am sitting worse and actually curving more and one surgeon says (spine surgeon) get the other hip done and the hip surgeon says it will make no difference in seating!! Who do I believe? I am not sure why this is happening, it seems my ligaments may just be over stretched, but how can I curve more being completely fused?



          I guess all you can do is go with your gut, get more than one opinion and know that whatever decision you make is for the best. Again bodies adapt at such a young age……Keep us all posted, sometimes I wonder if us adults give more fear to you parents but at the same time, I wish for myself and my parents that this list was available (well for that matter that the internet was available…lol). Knowledge is power and gives power and strength to these kids in their future and decision making. I would love to meet all these kids!!! In the job I have, I support people with disabilities in Recreation programs, I have only supported 2 kids with AMC in my 26 years of being in this field. I would love to work with all these amazing kids I read about here on this list…..



          Patty.



          From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf Of MARK & MARY HEINEN
          Sent: June-21-10 1:34 PM
          To: avenues2@yahoogroups.com
          Subject: Re: [avenues2] Juliet Update





          Thanks for the responses. Patti, I really appreciated your feedback on your own experiences. I guess my main concern with Juliet is twofold. First, due to many missing muscles in her upper body, she uses her ability to arch her back to get her arms in front of her for performing tasks and I see the brace and surgery taking that ability from her. Also she has severe hip contractures so falling is always a concern as she cannot land on her butt or catch herself. With no ability to arch her back, I feel her balance will be really thrown out of whack. Her hip contractures also mean she can only sit in a reclined customized chair and sitting has never been very comfortable for her so she spends the vast majority of her day standing up. I'm concerned the weight of the brace might also be a problem with all the standing she does as she is very petite.

          More info on the dog for Gail: The organization we went through is called Canine Companions for Independance. Their website is
          www.cci.org. They are the oldest service dog organization in the nation. They have their own breeding program and primarily breed labs and retrievers. The puppies once they are born are given to volunteer puppy raisers to learn basic commands and manners until they are about 18 months old. At that point, they go to one of the regional centers for 6 months of extensive training where they learn advanced commands such as pulling doors open, tugging drawers open, turning light switches on and off, retrieving a multitude of items, toileting on command, etc. About 4 of 10 dogs will make it through the training and become service dogs. So as you can imagine only the best are given to recipients as service dogs. CCI has 5 or so offices spread around the nation. We are in Minnesota and the closest office to us is their North Central Office in Ohio. You will begin the process by filling out an application and if they deem you may be a good candidate they will send out some additiona l more extensive paperwork for you to fill out including getting a letter from a doctor or therapist. If they still consider you to be a good candidate they will then schedule a phone interview for you. If that goes well, then you will be invited out for an in person interview where you will tour the facility, get a chance to see the dogs in action and try a bit of working with the dogs yourselves. Juliet and I applied as a team, meaning we would both leashed to the dog when out in public areas where certification is necessary. Then they send out a letter to let you know if you have been accepted onto the waiting list. The waiting list is typically around 2 years. We waited just under 2 years from the time we did our personal interview until the time we went out for training. The training period is 2 weeks. It is a group class with other potential participants. It is extremely thorough. You learn all about dog grooming, health , psychology, training and of course you wor k with the dogs each day. We worked with several dogs the first few days and then they assign the dog they think will work best based upon each recipient's unique needs and the personalities of the dogs. From then on that dog is yours to keep at your hotel room until training is complete. You do lots of field trips to public areas to practice commands. There are daily paper homework and tests and a final public access test you need to pass in order to become certified. I can't even tell you what a wonderful experience the training was. The trainers were awesome and the other recipients were such great people that we continue to stay in touch with them. The last day they throw a big graduation ceremoney and you get to meet the your puppy raisers. The puppy raisers travel from far and wide to come to graduation. It is quite incredible what a volunteer corp CCI has. CCI is non profit and does not charge for the dogs. When you get a dog you will become responsible for all o f it's food, grooming,, medical care and all expenses. The dog remains the property of CCI however until it is ready to retire at which point you have first option to adopt it. Guess that was a little long winded but let me know if you have anymore questions. I really cannot recommend CCI highly enough.

          Mary

          ----- Original Message -----

          From: Gail Brookhart

          To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>

          Sent: Sat, 19 Jun 2010 12:50:55 -0400 (EDT)

          Subject: Re: [avenues2] Juliet Update

          Hi

          My son is curious about service dogs and so we'd like to hear more about Tank and where you obtained him.

          Thanks and good to hear from you again!

          Gail Brookhart

          Mom to Alec

          ----- Original Message -----

          From: MARK & MARY HEINEN

          To: Avenues2

          Sent: Saturday, June 19, 2010 9:23 AM

          Subject: [avenues2] Juliet Update

          Hi All,

          Gosh it has been a long time since I've posted. Few things to share:

          Juliet got her service dog in February. Our 2 week training was an amazing experience. Her new dog Tank is just eh best. He has such a gentle demeanor and love to work. She uses him mostly for picking up items she drops, but I've also taught him how to take off my socks (she was to scared to be the guinea pig and is still a bit afraid he will accidentally bite her. I'm very glad we got Tank even though it was a long wait.

          On another not so good note, Juliet was at Shriner's this week and we were told her scoliosis has worsened considerably and we need to take immediate action. They want her to be braced during the entire day except for sleeping and showers and swimming. This is in hopes of pushing out surgery which they seem to think is inevitable.

          The whole appointment was a disaster. We saw the spine surgeon for the very first time and he did not have a good bedside manner. Juliet ended up in tears and I tried my best not to cry, but wasn't so successful. Juliet already has issues with so many things and the brace will create some huge obstacles for her. Not to mention she is already sensitive about people staring at her and now she knows it will be that much worse. She will likely need all new clothes as well (both pants and shirts from what I understand).

          Has anyone else had to deal with the bracing and please let us know what to expect? I also want to know if anyone has had the back fusion surgery and details. This just sucks so much, I'm in a black place right now.

          Mary

          [Non-text portions of this message have been removed]

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        • Patty Clarke
          HI Jaime, wow!! What a journey you and Dylan have been on. Yes I concur about the stinking brace!! It was hot, smelly and hard to breathe, eat etc but at the
          Message 4 of 11 , Jun 21, 2010
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            HI Jaime, wow!! What a journey you and Dylan have been on. Yes I concur
            about the stinking brace!! It was hot, smelly and hard to breathe, eat etc
            but at the same time it was more comfortable for the first few
            hours....because I was so crooked, my curve was almost 120 degrees, I grew 6
            inches after my surgery, it was quite exciting.

            That is so great Dylan has an assist dog, I am thinking of getting one
            myself. I know a few adults with AMC that have one and it is really quite
            remarkable, the improvement in quality of life.

            Patty.

            -----Original Message-----
            From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
            Of Darrin and Jaime Brown
            Sent: June-21-10 7:36 PM
            To: avenues2@yahoogroups.com
            Subject: RE: [avenues2] Juliet Update


            Mary,



            Long time no email!! Dylan and Juliet were just babies the last time we
            emailed! Dylan is 11 1/2 now and never learned to walk. His back and hips
            always kept him from that, not to mention his Neurogenic origin. Dylan has
            been braced almost full time (other than laying or swimming) since he was
            about 3. I imagine he could have done more without the brace, but Dylan lost
            most of his motion when he had his bilateral hip extension osteotomies at 3
            years. He couldn't long sit after that so he lost his "floor scoot" and
            thus his floor mobility. Remembering where Dylan and Juliet were back then,
            they could have been twins, but Dylan had those horrible hip contractures
            and less muscle tone. Anyway, we braced Dylan about 12 hours per day after
            his failed surgery (failed becuase his PT broke his leg the day after he got
            out of his body cast). What a waste, but they said Dylan would loose bowel
            and bladder function if we didn't do the surgery back then. Come to find
            out 7-years
            later he had a tethered spinal cord and maybe we could have saved all that
            hardship and given so much more. If only doctors were perfect, but they are
            CERTAINLY NOT!!! (Can you tell I am jaded!!!)



            Now at 11-1/2, Dylan is at 78 degrees. If we don't do spinal surgery this
            year, they say he will never SIT again. Imagine, after watching his back
            like it was going to do tricks, we now have to have this surgery NOW or he
            can't even sit!!! Never, did I think we would be here. DUMB doctors!!!
            (AGAIN, I am jaded)...



            Dylan will have his surgery September 23 @ DuPont Hospital by Dr. Gabos. I
            can't believe we waited so long as Dr. Gabos said it is required now! I
            just have to wonder sometimes!!



            A life in a backbrace just stinks! Dylan's shorts and pants are a size 34
            mens when they should be a boys large. His tshirts hang off his to fit over
            his brace and he has to wear a tshirt under the brace to avoid rashing, so
            he sweats all the time. I don't want to make you more miserable, but it
            stinks. On the other hand, it is totally worth it to have your child
            breath, eat without reflux, and have a normal digestive system. Dylan can't
            eat without reflux, has trouble peeing, thinks he has to go #2 when he
            doesn't, and is uncomfortable alot of the time. The surgery is necessary
            for him now, but it runs alot of consequences and risks. I wish we could
            just adjust to a brace! Dylan will be fused from his neck to and including
            his pelvlis. A complete spinal fusion. No movement ever again...How does
            he recover from that??? I guess we just have to be happy he will still be
            able to sit, and eat, and pee/poop, and breathe!!! I am dreading the
            surgery and am mad at the do
            ctors, but I am happy there will be life after the surgery! Dylan is a
            computer wiz and he can continue on that path once he heals! Bracing is not
            the end of the world for Juliet and surgery is not the end of the world for
            Dylan. Life goes on...



            On a happy note, Dylan got his service dog, Codie, from CCI (Canine
            Companions for Independence) 4 weeks ago. Codie is the best, most awesome,
            most wonderful dog! She is a black lab and I wouldn't trade the grueling 2
            week experience at CCI for ANYTHING in this world (or my house full of dog
            hair!). It changed Dylan's life and mine too!!! Codie can open and close
            doors, turn on and off lights (unfortunately ours are too high and we have
            to get extensions), pick stuff up off the floor, bark on command, she sleeps
            with Dylan, and has become a great companion for Dylan. We went to CCI
            Northeast on Long Island. It was BEYOND WONDERFUL!!!


            And now, I am beyond tired, so I am going to close here and hope my email
            makes sense and doesn't have too many typos without checking it over. Good
            luck Mary!! And to everyone else...Apply for CCI today!!!!



            Jaime Brown

            (mom to Dylan - 11 1/2 with neurogenic AMC)






            To: avenues2@yahoogroups.com
            From: mmajch94@...
            Date: Sat, 19 Jun 2010 09:23:36 -0400
            Subject: [avenues2] Juliet Update






            Hi All,

            Gosh it has been a long time since I've posted. Few things to share:

            Juliet got her service dog in February. Our 2 week training was an amazing
            experience. Her new dog Tank is just eh best. He has such a gentle demeanor
            and love to work. She uses him mostly for picking up items she drops, but
            I've also taught him how to take off my socks (she was to scared to be the
            guinea pig and is still a bit afraid he will accidentally bite her. I'm very
            glad we got Tank even though it was a long wait.

            On another not so good note, Juliet was at Shriner's this week and we were
            told her scoliosis has worsened considerably and we need to take immediate
            action. They want her to be braced during the entire day except for sleeping
            and showers and swimming. This is in hopes of pushing out surgery which they
            seem to think is inevitable.
            The whole appointment was a disaster. We saw the spine surgeon for the very
            first time and he did not have a good bedside manner. Juliet ended up in
            tears and I tried my best not to cry, but wasn't so successful. Juliet
            already has issues with so many things and the brace will create some huge
            obstacles for her. Not to mention she is already sensitive about people
            staring at her and now she knows it will be that much worse. She will likely
            need all new clothes as well (both pants and shirts from what I understand).


            Has anyone else had to deal with the bracing and please let us know what to
            expect? I also want to know if anyone has had the back fusion surgery and
            details. This just sucks so much, I'm in a black place right now.

            Mary

            [Non-text portions of this message have been removed]





            _________________________________________________________________
            The New Busy is not the old busy. Search, chat and e-mail from your inbox.
            http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:W
            L:en-US:WM_HMP:042010_3

            [Non-text portions of this message have been removed]



            ------------------------------------

            Yahoo! Groups Links
          • TAHARTT@aol.com
            Mary, Email me privately if you think Julliette would like to met or email with Ana. Ana is 12 and she has no muscle in her uppper body (breast bone to finger
            Message 5 of 11 , Jun 22, 2010
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              Mary,

              Email me privately if you think Julliette would like to met or email with Ana. Ana is 12 and she has no muscle in her uppper body (breast bone to finger tips) or knees to toes. Like Juliette she can walk and uses her body position to place her arms. Other than that she is a 12 year old girl - loves reading, twilight and cute boys : ) Oh, and she thinks she knows everything. Just ask her.
              She is on face book under Ana Hart-Thomas - oddly her profile pic. is one of her friends and her pic is on their page (??)

              Take care,

              Traci Hart-Thomas
              mom to 8, 2 w/ AMC, 3 lps & 2 micro premies






              -----Original Message-----
              From: Patty Clarke <pelclarke@...>
              To: avenues2@yahoogroups.com
              Sent: Mon, Jun 21, 2010 11:02 pm
              Subject: RE: [avenues2] Juliet Update




              HI Jaime, wow!! What a journey you and Dylan have been on. Yes I concur
              about the stinking brace!! It was hot, smelly and hard to breathe, eat etc
              but at the same time it was more comfortable for the first few
              hours....because I was so crooked, my curve was almost 120 degrees, I grew 6
              inches after my surgery, it was quite exciting.

              That is so great Dylan has an assist dog, I am thinking of getting one
              myself. I know a few adults with AMC that have one and it is really quite
              remarkable, the improvement in quality of life.

              Patty.

              -----Original Message-----
              From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
              Of Darrin and Jaime Brown
              Sent: June-21-10 7:36 PM
              To: avenues2@yahoogroups.com
              Subject: RE: [avenues2] Juliet Update

              Mary,

              Long time no email!! Dylan and Juliet were just babies the last time we
              emailed! Dylan is 11 1/2 now and never learned to walk. His back and hips
              always kept him from that, not to mention his Neurogenic origin. Dylan has
              been braced almost full time (other than laying or swimming) since he was
              about 3. I imagine he could have done more without the brace, but Dylan lost
              most of his motion when he had his bilateral hip extension osteotomies at 3
              years. He couldn't long sit after that so he lost his "floor scoot" and
              thus his floor mobility. Remembering where Dylan and Juliet were back then,
              they could have been twins, but Dylan had those horrible hip contractures
              and less muscle tone. Anyway, we braced Dylan about 12 hours per day after
              his failed surgery (failed becuase his PT broke his leg the day after he got
              out of his body cast). What a waste, but they said Dylan would loose bowel
              and bladder function if we didn't do the surgery back then. Come to find
              out 7-years
              later he had a tethered spinal cord and maybe we could have saved all that
              hardship and given so much more. If only doctors were perfect, but they are
              CERTAINLY NOT!!! (Can you tell I am jaded!!!)

              Now at 11-1/2, Dylan is at 78 degrees. If we don't do spinal surgery this
              year, they say he will never SIT again. Imagine, after watching his back
              like it was going to do tricks, we now have to have this surgery NOW or he
              can't even sit!!! Never, did I think we would be here. DUMB doctors!!!
              (AGAIN, I am jaded)...

              Dylan will have his surgery September 23 @ DuPont Hospital by Dr. Gabos. I
              can't believe we waited so long as Dr. Gabos said it is required now! I
              just have to wonder sometimes!!

              A life in a backbrace just stinks! Dylan's shorts and pants are a size 34
              mens when they should be a boys large. His tshirts hang off his to fit over
              his brace and he has to wear a tshirt under the brace to avoid rashing, so
              he sweats all the time. I don't want to make you more miserable, but it
              stinks. On the other hand, it is totally worth it to have your child
              breath, eat without reflux, and have a normal digestive system. Dylan can't
              eat without reflux, has trouble peeing, thinks he has to go #2 when he
              doesn't, and is uncomfortable alot of the time. The surgery is necessary
              for him now, but it runs alot of consequences and risks. I wish we could
              just adjust to a brace! Dylan will be fused from his neck to and including
              his pelvlis. A complete spinal fusion. No movement ever again...How does
              he recover from that??? I guess we just have to be happy he will still be
              able to sit, and eat, and pee/poop, and breathe!!! I am dreading the
              surgery and am mad at the do
              ctors, but I am happy there will be life after the surgery! Dylan is a
              computer wiz and he can continue on that path once he heals! Bracing is not
              the end of the world for Juliet and surgery is not the end of the world for
              Dylan. Life goes on...

              On a happy note, Dylan got his service dog, Codie, from CCI (Canine
              Companions for Independence) 4 weeks ago. Codie is the best, most awesome,
              most wonderful dog! She is a black lab and I wouldn't trade the grueling 2
              week experience at CCI for ANYTHING in this world (or my house full of dog
              hair!). It changed Dylan's life and mine too!!! Codie can open and close
              doors, turn on and off lights (unfortunately ours are too high and we have
              to get extensions), pick stuff up off the floor, bark on command, she sleeps
              with Dylan, and has become a great companion for Dylan. We went to CCI
              Northeast on Long Island. It was BEYOND WONDERFUL!!!

              And now, I am beyond tired, so I am going to close here and hope my email
              makes sense and doesn't have too many typos without checking it over. Good
              luck Mary!! And to everyone else...Apply for CCI today!!!!

              Jaime Brown

              (mom to Dylan - 11 1/2 with neurogenic AMC)

              To: avenues2@yahoogroups.com
              From: mmajch94@...
              Date: Sat, 19 Jun 2010 09:23:36 -0400
              Subject: [avenues2] Juliet Update

              Hi All,

              Gosh it has been a long time since I've posted. Few things to share:

              Juliet got her service dog in February. Our 2 week training was an amazing
              experience. Her new dog Tank is just eh best. He has such a gentle demeanor
              and love to work. She uses him mostly for picking up items she drops, but
              I've also taught him how to take off my socks (she was to scared to be the
              guinea pig and is still a bit afraid he will accidentally bite her. I'm very
              glad we got Tank even though it was a long wait.

              On another not so good note, Juliet was at Shriner's this week and we were
              told her scoliosis has worsened considerably and we need to take immediate
              action. They want her to be braced during the entire day except for sleeping
              and showers and swimming. This is in hopes of pushing out surgery which they
              seem to think is inevitable.
              The whole appointment was a disaster. We saw the spine surgeon for the very
              first time and he did not have a good bedside manner. Juliet ended up in
              tears and I tried my best not to cry, but wasn't so successful. Juliet
              already has issues with so many things and the brace will create some huge
              obstacles for her. Not to mention she is already sensitive about people
              staring at her and now she knows it will be that much worse. She will likely
              need all new clothes as well (both pants and shirts from what I understand).

              Has anyone else had to deal with the bracing and please let us know what to
              expect? I also want to know if anyone has had the back fusion surgery and
              details. This just sucks so much, I'm in a black place right now.

              Mary

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