Post by legbraces on Apr 22, 2020 16:17:06 GMT
the Big Day
The Day arrived it was the day I get my brace because of scoliosis, the brace that'll wear for three years 23 hrs a day is a Milwaukee brace.
I arrived at the clinic early, the Dr called me into the room and told me to strip down to my underwear. he then told me I will need to put on
a compression suit that'll be warn under my brace. the suit goes from my shoulders to just above my knees. after that was put on the brace
was next he then opened the brace in front of me and put it on me, he strapped me in then adjusted the throat mold and neck ring to stretch my
neck where I couldn't move it. they then told me to get dressed and go out to get used to the brace then come back for final adjustments. We
went to the mall to get stuff to cover the brace as much as we could. that hour went by fast. We went back to the clinic and the Dr. had final
adjustments done. He sent me home with seven pairs of compression suits for the brace. they had to be warn under the brace, summer will be
interesting that's coming soon.
Three months since I got the brace it's now summer time and when I'm home I wear nothing over the brace because it's to hot all I have on
is the compression suit if I go outside I need to be in the shade because it's to warm in the brace. when I go out to eat or be with friends I
wear light weight cloths to help with the heat. After a while I had to cheat a little and not wear the brace do to the heat of the summer
I just wear it at night and without the suit. I did that for three months until my checkup.
Three months later six months with the brace is my checkup. I went to the clinic and the Dr saw me, he wasn't pleased he noted I wasn't wearing
the brace and compression suit all the time. this time he told me to strip down after taking the brace off. he had to put me in a body cast
the cast goes from my neck to the waist. He said it will need to be on for six months. I was told the casting room was ready, they told me to get
into the wheelchair we aren't allowed to walk to the casting room. I was then helped into the casting frame then they sedated me so they can stretch
me easily. three hours later I woke up in the recovery room I couldn't move an inch, the Dr came in and said I'll be in this for six months and
wants me to lay flat for the first month so they will prescribe me a custom molded prone cart that fits me and the cast perfectly I'll need to be
I will be in this cart for the first month. They strapped me in from feet to head. after that they loaded me into an ambulance to bring me home
when I got home they wheeled me to my room and gave me prism glasses so I can see in front of me. I couldn't move at all do to the straps
I will need to be fed the first month. the next day I was wheeled outside for fresh air it was winter so I had layers of blankets on me to keep
me warm. a month later the Dr called and said I can be released from the cart they sent an unbalance to bring me back to the clinic they needed
special tools to unstrap me from the cart. after I was unstrapped I was then helped out and into a wheelchair to head to therapy to help me re gain
my ability to walk. I will need to go three times a week for the next month so I can learn to move about with the body cast. They give me a wheelchair
for use while I regain my ability to walk
Therapy consisted of walking with weights and parallel bars for that month, I was able to walk normal a month later it was almost time to be out of
the cast, the Dr called and said come in early he wanted to give me an upgrade. we drove to the clinic and went in for the new surprise. they asked me
to get into the chair and they wheeled me to the casting room to be cut out of the cast. after that I was able to shower. they Dr called me to the exam
room and said time to strip completely this time. then wheeled in a cart that had a cover on it. he told me time for the surprise. He started building
around my body starting with the hips and screwed the brace together then added a bar in the front and back and put a neck ring on, then he started
to build around my ribs and back as well as shoulders. he said my body will take shape and will need monthly adjustments for the next year, this brace
won't come off and it's waterproof so I can shower in it, The brace was made with carbon fiber and other light materials. he told me once a month
I will need adjustments. and gave me a diet so I wouldn't gain to much weight in the brace.
after a few months in the brace and adjustments my body is stiffer and straight from the last time I was first put into this brace. It's now six months in
and I adjusted to it wall I can easily hide it and it's not noticeable under cloths. but when I'm home I only wear shorts because the brace is to hot in
the summer. Hopefully the next time I see the specialist I can get the brace off for good. and given a night brace.
One year later back at the orthosist clinic. the Dr took the brace off but had bad news, he said my back was so weak because of the brace and will need a new
one that will need to be on longer. He also noticed my walking got bad so he had me fitted for leg braces that will be attached to the brace 24/7 and was told
I'll need a wheelchair for the new brace and the prone cart. I was wheeled into the casting room to be casted for the new brace, this cast went from head to
toes then I was cut out after it dried and put back into my brace and we ordered my power chair it will have straps for my feet legs torso and head.
He said my back was collapsing and he will need to have me in a new brace as well as leg braces, for now he wants me to use a manual chair until the power chair comes
in that'll be ready before the brace. a week later we went to get the wheelchair at the clinic I was sitting there and then they called me in to the room
I was wheeled in and then helped into the new chair and strapped in. I was shown how things work and this will be used for daytime use the prone cart
will be night time use for now. I was taken home in a van and then wheeled into my house using the new ramp that was put in a week earlier.
three months after getting the wheelchair we headed back to the clinic for my new brace. they lifted me out of my chair and onto the bed and undid
the old brace. and started assembling the new one starting with the leg braces, they're riveted together so they can't come off then the hip part was added
then they sat me up and held me up to do the next part, they added carbon fiber panels that fit my body firmly they cover my chest and back and were glued
together and riveted, they then went up my neck and around my head and clapped on, they said the head part can be changed if needed it can come off so I
can get a hair cut and shave. I had to trip my hair short to fit the head part. they then lifted me off the bed after the brace was applied then back into
the wheelchair and strapped in. The new brace held me straight and held my head straight I couldn't move my upper body at all, the brace was made with
carbon fiber and covered everything but mt face and between my legs the leg braces had hinges at the knees and hips they also were made of carbon fiber
ans cover every inch of my legs. the Wheelchair had straps for my ankles and legs as well as a lap strap and a chest strap as well as a head strap
I can control the chair with my right hand, my arms aren't braced for now.
A week later we went out to eat it was my first time in the wheelchair and new braces in public. we found a nice restaurant and ate there and then went
to the sea side to watch the sun set. that night I was put into the prone cart and the legs were locked at zero degrees and I was strapped in for the night.
The next morning I woke up and decided to stay in the cart since I wasn't going anywhere. I was wheeled outside for fresh air. after that I was wheeled back in
and ate lunch then decided to take a nap. I'm getting used to not being independent my condition could get worse if I was walking freely. I'm immobile from head to
toe at least I can bend my legs to sit in the wheelchair, the heaving bracing on my body is pushing and pulling on my spine to keep it straight and my neck and
head are fixed in one direction. the head part can be changed as well as the lower park, the ortho designed it that way in case I needed to be fully straight.
a Year later the Dr called and wanted a checkup, I was laying in my prone cart strapped in like I do for the evenings, the Dr asked if I was in the cart still
I said yes, he said come in on the cart. we loaded the cart into the van with me strapped to it, when we got to the clinic we went in and waited the Dr came out
and wheeled me into the room he said he wanted me in the cart because there will be upgrades to my brace that will require the cart, they took the leg braces and
hip braces off and then they came pack with a leg braces and hip combo that can be riveted to my body brace. I will need to be strapped to the cart 24/7
they also added straps to the cart and made them so they couldn't be taken off without a tool. I was wheeled back to the waiting room I was wheeled out to the van
and put in it for the ride home. They added monitors so I could see where I was with the cameras on the cart and one for me to connect to my TV to watch TV. They
also gave me a a blanket that can be cooled or heated to be draped over me. we have the blanket cooled for the summers to keep be cool and heated for the winters
to keep me warm.
One year later the Dr called and asked how things were going and if I had any issues. I said things are going well but would love to be able to site normal again.
He said come in and bring the wheelchair. we loaded the chair and me in the prone cart into the van for the ride to the clinic. We got there and the dr was waiting already
he said we're going to take you out of the cart and put you into the wheelchair again. they wheeled me in to the room then undid the straps on the cart
and lifted me out of the cart with a lift and onto the bed. they took the leg braces off and then modified the leg braces and turned them into AFOs that
would require cast shoes to walk. they lifted me into the wheelchair still in my heavy body brace they said we'll have you go try to walk this afternoon. We went
to the therapy room and they had me park the chair in front of a treadmill. they then helped me into a harness on the treadmill and started helping me walk, they
said this will probably take a few weeks before I could walk but will need the wheelchair for long distances and prone cart for nighttime.
Three weeks later we went to therapy and I was able to walk with the help of AFO braces and forearm crutches this time, When my muscles regain control they'll have
me wear the AFOs a night along with my Permanent body brace. a month later I was able to walk without the crutches but still needed the wheelchair for long
distances, the AFOs were modified into night braces as well they looked like casts but they were made of carbon fiber and had straps ti hold them on. they told me
that they'll see me in two years and to continue to use the wheelchair if needed and still need the prone cart for night only.
Now that I am a little more independent I was able to go out more, but brought the chair to use while roaming the mall because it's still a lot of walking
I don't use the chair at home though. the Body brace still goes from my waist to my head, they were going to reduce it but realized my body adapted to the brace
and my body wouldn't support my weight without the brace.
six months later I woke up and my legs and arms were tingling so I called the Dr and he said come in right away and stay in the cart if I'm in it. we went to
the clinic and he met me there, and told me I will need to be put back into a body cast this time cover all my limbs, I also noted my breathing wasn't well so they
decided to do an emergency tracheotomy, in the recovery room I'm on a ventilator, they said my lungs couldn't take the strain of the brace anymore
after a few weeks of recovering I was wheeled to the casting room and they began to take the brace off for the body cast, they asked me what color I'd want
since it'll be on me for a while, I chose blue to try to blend into the blue prone cart they began casting me starting with my feet then legs, and then they
casted my torso and shoulders as well as arms and hands, then they did my neck leaving room for the trach and then wrapped casting around my head keeping
my mouth and nose open. after four hours in the casting room, I laid in my hospital bed to let the cast set, after it dried they moved me to my cart, and strapped
me in and re connected me to a portable ventilator on the cart, they also put a NG feeding tube down my nose on both sides, I will need to be fed my this way at night
only. after that I was sent home and told to see them in six months.
Three months into being in a full body cast and trached and being fed my NG tube at night and my my nurse during the day I've come to the realization this will be
life I'll have to live. My nurse takes me outside in the yard in the mornings and then in the afternoon I spend the time watching tv while the nurse checks my vitals
every hour. I also need assistance going to the bathroom I'm using a catheter for that, and a dieper, my prone cart has new straps on it that are medal and firmly
connected as well as locked 24/7. I don't go out that much because it's a lot of work with the cart I'm on and it takes up more room than the chair. I usually
take naps now because it's so exhorting with the trach breathing for me. I forgot what it was like to put a pair of shorts on and a shirt, I had all my cloths
donated to good will because I wouldn't need them with the body cast that they plan on changing every six months for at least a year.
Time to go see the Dr and get my cast changed as well as be measured and fitted for a special body brace that will cover my entire body from head to toe and a new
procedure to be done. This time we needed an ambulance to bring me because I needed extra care. they brought me to the clinic ans wheeled me in, the Dr said we'll take
the bod cast off and put a compression suit on for the evening before my sugary for the G-Tube. the compression suit will help keep my muscles relaxed as well
as muscle relaxer. the next morning I was helped out of the compression suit and prepped for sugary, they wheeled me into the OR and began getting me ready
for the G-Tube placement. Two hours later I was in recovery form the sugary and was already hooked up to nutrtants with the G-Tube, they then told me I will not
be able to eat by mouth anymore or drink, they also said the next brace will require a bite plate to be placed 24/7 and asked if I want my mouth part closed on the
beace because of that, I said might as well, they're also going to get me a communications device that'll be used my eye sight because my arms will be useless with the new brace. A few days later I was wheeled into the casting room for the cast for the brace that will be covering all of my body including mouth and nose now that I'm breathing with a trach, they'll keep the eye slots open because I'll need them for the communication device. after the cast for the brace dried I was cut out and put into the compression suit. I was told see you in a hour for the cast, in that hour I was placed into my wheelchair and strapped in, this time my hands and arms were strapped in too. They had me control the chair my mouth. We went to the ortodontist next door to get impressions for the bit plate that'll be glued in for the foreseeable
future. after the appointment we went back to the clinic for the casting processes. I was moved from the chair to the casting frame then had the compression suit taken off
they started casting me like the last time beginning at the feet and up to my torso they left a spot open for the G-Tube then up my neck leaving a spot for the trach
they then went around my head like before but covered the skull this time. three hours later the cast was dry and I was ready to be put into the prone cart again.
After that I was loaded into the ambulance for the ride home. I'll be six months until I see the brace.
Six months later it was time for the brace and a new prone cart. The ambulance came to take me to the clinic. When we arrived I was brought straight to the casting
room to get the cast removed after that I was cleaned up and put onto a new prone cart that had even more straps and monitors. first they put the bite plate in and
glued it into place. then they wheeled me to the ortho room. my brace was out and ready it was carbon fiber and also had rivets and clamps to keep it on me it was also
a tighter fit they said because it will need to be in place for the rest of my life, because my condition isn't curable. they lifted me up and put me in the back half
and positioned my legs and hands firmly then they started building the top half starting with the feet and legs they also had a spot for the G-Tube when they got to my torso
the brace then went around my head mouth and nose only keeping a spot open for my trach, eyes, and ears. They then began clamping it shut. it was so tight but I would
get used ot it after a while. they then lifted me up and put me onto my cart and strapped me down multiple straps they were made of rust proof medal and fit
my carbon fiber brace perfectly. no need for cloths now because the brace isn't see through. after everything was set the ambulance came to take me home.
Three months into the new brace I've gotten used to not being able to move and I'm learning the communication device well. I take muscle relaxers daily and am fed
by the G-Tube twice a day and at night I'm fed with a special diet and in it is meds to help me sleep, I usually get taken outside in the mornings and sometimes
go for walks with my nurse pushing me. It;'s been two years since I was able to walk and three years since my diagnosis out severe scoliosis. my back is fully straight
but needs to be immobilized 24/7 to stay that way. I've been able to go out with the assistance of the nurse and get fresh air, I've now mastered the communications device
the dr called and said he will need to see me once a year to see if there are any improvements. he wants to get me back into a wheelchair eventually but that's up to
my body if it can handle it since I've been lying flat on my back for over a year now between casts and braces.
After being in the cart for four years now it's time to go see the Dr. at the clinic and see what is next. I was loaded into the van and we went to the clinic
when I arrived I was wheeled to the exam room they then undid the straps on the cart and unplugged the vent and re attached it to the one they have. The Dr took
X-Rays and said that I will need to stay in the Brace he didn't see any improvements, but they'll upgrade the chart this time they gave us a cart that can be tilted
to a 45 degree angle and had even more straps to accommodate that. they lifted me off the bed and onto the new cart this time it had form fit foam encasing my back half
and foam with straps covering my body except my trach and head, I still have a head strap bit with the new cart and foam fit design I'm now covered my the foam and strapped
down. they then plugged me up to the vent and my G-Tube was plugged in also. They then tested the cart and I was able to see from a different angle for the first time in
years, they then remounted the screams for my communication device. they then said I could head home. I was loaded back into the fan and we went home.
Now in the new cart it's easier for me to see my surroundings when at a 45 degree angle, that is only done when I'm stationary at night I lay flat. I've been in some sort of
brace for six years now and my body has completely going accustom to it. I've been able to adapt to not being able to move or walk but this was needed in order for the scoliosis
not to get worse. the Dr has no idea how long I will need to be like this but it's what I'll have to deal with for the foreseeable future. I have setting into a schedule
the nurse gets me up in the morning and feeds me, then we go outside for fresh air and then she'll bring me out for a walk by pushing me after the walk we go
back to my house for lunch and then I usually take a nap and then watch TV, I'll be set at the 45 degree angle when watching TV. She changes my Trach once a day to keep it clean
I also take muscle relaxers twice a day because of my body being immobile and has been for several years. If I'm let out of the Body Brace I will meed to be in a wheelchair for
the rest of my life so I find it easier to be in the body brace and strapped to the cart full-time. sometimes we go out but not that much because the cart is a lot of work
to move around crowded places.
A year later the Dr called and asked if we can come to the office for a checkup, I was loaded into the van and we went to the clinic. We arrived for the non appointment
I was wheeled to the exam room, this room was different than the one I used to be in at other checkups I was unstrapped from the cart then was lifted onto a
exam table, they told me that they're planning to take the body brace off to examine my body, they had to temporary unhook my trach and G-Tube, they then undid the clamps
that held the brace on me and re attached the trach they then lifted me up in a sling to take the back half out and put me back on the table, this was the first time I was out
of the ridged brace in for seven years. they then checked my weight and all the important stuff. they told me they want to get me back into a wheelchair and a standard
CTLSO brace but the brace would be on me 24/7 not able to come off, and I would need to be wheelchair bound while I gain my muscles back, they started the casting right away
. They tightly wrapped plaster around my abdomen and went up around mt shoulders and around my neck with a spot for the trach and up the back of my head and around the front
after it dried I was cut out of it and then cleaned up, and they then did my legs for the HKAFOs that would be warm during the day only after those were made I was
then placed back int the full body brace and hooked back up to my vent and G-Tube and was told see you in three weeks then I was put back into the cart and strapped in
they said the bite plate will come out when I get the brace as well. I was loaded into the van and headed back home. I'lll used the cart for night but the wheelchair
during the day, they decided to get me anew chair one that will be needed to be controlled by mouth. it will also recline and have added straps as well as a place for
the ventilator.
Three weeks later was the big day I've been waiting for for seven years, the day that I got to be able to be in a wheelchair again and hopefully soon walking again
I was up early because the appointment was a 9 AM appointment and we'd be there for half the day. I was loaded into the van for the ride to the clinic I was there
early but they took me right away, first they unclipped the body brace then they unhooked the vent and G-Tube took the top half off and hooked the trach back up
they lifted me out of the bottom half and onto the bed, they said putting the new brace on will take about two hours it have to be secured on with no removable clamps
and rivets. they started at the hips and then put a metal bar in the front and one in the back and started connecting carbon fiber pieces to my body and then went up
over my shoulders and around my neck they then re hooked my vet and then continued up and around my head, they then had the orthodontist come and remove the bite plate and put
retainers in that can be removed for eating, I'll only use the G-Tube for medication to keep my weight in balance for the brace but I'll get to eat real food for the
first time in seven years, I'll need to learn to talk again and will need help eating at first. the brace is made of carbon fiber and rust proof steal. they then put my new
HKAFOs on and connected them to the new brace they can be removed but prefer them to be on 24/7 as well, they get put my hands in to thumb spicas that went to my elbows.
after they checked things over they lifted me up and put me into my new wheelchair they chair can recline and stay normal they strapped my ankles in waist in body harness on
and head strap as well as strapping my hands on the arm rests, they then showed me how to move the chair by mouth. I was then told they want to try to get me walking
in three months. and scheduled me to stay at a rehab place when that time comes.
It's been a month since I was out of the full Body brace and in the CTLSO and leg braces as well back into the Wheelchair and I've been able to go out more than I used to
still need a Trach because my body now has been accustom to it so that'll probably be in place from now on as well as the G-Tube, at-least I can eat some real food again
I've been able to go out with friends a lot more now, I still get put into the cart for the night but the chair is used during the day. soon I will know when I'll have to
go to rehab to learn to walk again. I'll have to use the chair for long distance though because of the trach. I'm in the Wheelchair 12 hours a day and the Cart 11 hours a day
the one hour is for the shower. my schedule usually has me in the cart two hours before I go to bed and about an hour after I wake up. they nurse then uses a lifted to put me
in my chair.
It's been three months since I was out of the body cast and it was time to go to rehab so I can learn to walk again. My dr called me and told me to stay in the cart for
the ride to rehab. the ambulance came to pick me up and the van followed with my chair. two hours later I was at the rehab center and was unloaded and wheeled in and then taken
to my room. They kept me in the cart and said the next day I will start trying to walk on a treadmill. the next day I was woken up and was moved to my chair and was taken
to therapy, they lifted me up and put me in a harness and moved me to a treadmill. they started with the treadmill because my muscles were weak from in activity and needed assistance
at first, they said that the plan is to get me walking in three months, and to learn to walk with the CTLSO and leg braces. the first month I was on the treadmil with assistance.
the second month they wanted me to try parallel bars, I was able to walk with holding onto the bars at first but as time went on I started to walk without touching them
they said they want to try forearm crutches next and they had me walk with them, I was able to do a small distance with them. I've been in rehab for two months now and I'm
almost able to walk freely with the assistance of leg braces. they said by the time I'm done here they hope I don't need leg braces attached to the CTLSO.
Three months later they took the leg braces off and had me walk without them but with crutches, it was hard at first but then got easy as the time went on. They then wanted me
to learn to get in and out of bed, they did that for a few weeks and then wanted me to try walking without crutches. I was able to do that. It was time for me to go home after three months
I was able to walk out pushing my wheelchair, they also noted I was able to get around without the trach in so that'll be used for night time use still but they want to take it out soon.
It's been a month since my braces were reduced to the CTLSO and it was time for me to get my trach removed my lungs have regained their strength and they're not worried about my back collapsing
because of the brace. they also want to remove the G-Tube. I headed back to the clinic and they took me in and then began removing the trach and G-Tube. after that was done
the Dr said that everything looks good and was able to head home I now don't need the cart but still used the wheelchair if I need to go long distances.
The chair now has hand controls but when I'm home I move freely in my house. I've gone out a lot now that I'm independent but I know I'll be in this brace for life.
The Day arrived it was the day I get my brace because of scoliosis, the brace that'll wear for three years 23 hrs a day is a Milwaukee brace.
I arrived at the clinic early, the Dr called me into the room and told me to strip down to my underwear. he then told me I will need to put on
a compression suit that'll be warn under my brace. the suit goes from my shoulders to just above my knees. after that was put on the brace
was next he then opened the brace in front of me and put it on me, he strapped me in then adjusted the throat mold and neck ring to stretch my
neck where I couldn't move it. they then told me to get dressed and go out to get used to the brace then come back for final adjustments. We
went to the mall to get stuff to cover the brace as much as we could. that hour went by fast. We went back to the clinic and the Dr. had final
adjustments done. He sent me home with seven pairs of compression suits for the brace. they had to be warn under the brace, summer will be
interesting that's coming soon.
Three months since I got the brace it's now summer time and when I'm home I wear nothing over the brace because it's to hot all I have on
is the compression suit if I go outside I need to be in the shade because it's to warm in the brace. when I go out to eat or be with friends I
wear light weight cloths to help with the heat. After a while I had to cheat a little and not wear the brace do to the heat of the summer
I just wear it at night and without the suit. I did that for three months until my checkup.
Three months later six months with the brace is my checkup. I went to the clinic and the Dr saw me, he wasn't pleased he noted I wasn't wearing
the brace and compression suit all the time. this time he told me to strip down after taking the brace off. he had to put me in a body cast
the cast goes from my neck to the waist. He said it will need to be on for six months. I was told the casting room was ready, they told me to get
into the wheelchair we aren't allowed to walk to the casting room. I was then helped into the casting frame then they sedated me so they can stretch
me easily. three hours later I woke up in the recovery room I couldn't move an inch, the Dr came in and said I'll be in this for six months and
wants me to lay flat for the first month so they will prescribe me a custom molded prone cart that fits me and the cast perfectly I'll need to be
I will be in this cart for the first month. They strapped me in from feet to head. after that they loaded me into an ambulance to bring me home
when I got home they wheeled me to my room and gave me prism glasses so I can see in front of me. I couldn't move at all do to the straps
I will need to be fed the first month. the next day I was wheeled outside for fresh air it was winter so I had layers of blankets on me to keep
me warm. a month later the Dr called and said I can be released from the cart they sent an unbalance to bring me back to the clinic they needed
special tools to unstrap me from the cart. after I was unstrapped I was then helped out and into a wheelchair to head to therapy to help me re gain
my ability to walk. I will need to go three times a week for the next month so I can learn to move about with the body cast. They give me a wheelchair
for use while I regain my ability to walk
Therapy consisted of walking with weights and parallel bars for that month, I was able to walk normal a month later it was almost time to be out of
the cast, the Dr called and said come in early he wanted to give me an upgrade. we drove to the clinic and went in for the new surprise. they asked me
to get into the chair and they wheeled me to the casting room to be cut out of the cast. after that I was able to shower. they Dr called me to the exam
room and said time to strip completely this time. then wheeled in a cart that had a cover on it. he told me time for the surprise. He started building
around my body starting with the hips and screwed the brace together then added a bar in the front and back and put a neck ring on, then he started
to build around my ribs and back as well as shoulders. he said my body will take shape and will need monthly adjustments for the next year, this brace
won't come off and it's waterproof so I can shower in it, The brace was made with carbon fiber and other light materials. he told me once a month
I will need adjustments. and gave me a diet so I wouldn't gain to much weight in the brace.
after a few months in the brace and adjustments my body is stiffer and straight from the last time I was first put into this brace. It's now six months in
and I adjusted to it wall I can easily hide it and it's not noticeable under cloths. but when I'm home I only wear shorts because the brace is to hot in
the summer. Hopefully the next time I see the specialist I can get the brace off for good. and given a night brace.
One year later back at the orthosist clinic. the Dr took the brace off but had bad news, he said my back was so weak because of the brace and will need a new
one that will need to be on longer. He also noticed my walking got bad so he had me fitted for leg braces that will be attached to the brace 24/7 and was told
I'll need a wheelchair for the new brace and the prone cart. I was wheeled into the casting room to be casted for the new brace, this cast went from head to
toes then I was cut out after it dried and put back into my brace and we ordered my power chair it will have straps for my feet legs torso and head.
He said my back was collapsing and he will need to have me in a new brace as well as leg braces, for now he wants me to use a manual chair until the power chair comes
in that'll be ready before the brace. a week later we went to get the wheelchair at the clinic I was sitting there and then they called me in to the room
I was wheeled in and then helped into the new chair and strapped in. I was shown how things work and this will be used for daytime use the prone cart
will be night time use for now. I was taken home in a van and then wheeled into my house using the new ramp that was put in a week earlier.
three months after getting the wheelchair we headed back to the clinic for my new brace. they lifted me out of my chair and onto the bed and undid
the old brace. and started assembling the new one starting with the leg braces, they're riveted together so they can't come off then the hip part was added
then they sat me up and held me up to do the next part, they added carbon fiber panels that fit my body firmly they cover my chest and back and were glued
together and riveted, they then went up my neck and around my head and clapped on, they said the head part can be changed if needed it can come off so I
can get a hair cut and shave. I had to trip my hair short to fit the head part. they then lifted me off the bed after the brace was applied then back into
the wheelchair and strapped in. The new brace held me straight and held my head straight I couldn't move my upper body at all, the brace was made with
carbon fiber and covered everything but mt face and between my legs the leg braces had hinges at the knees and hips they also were made of carbon fiber
ans cover every inch of my legs. the Wheelchair had straps for my ankles and legs as well as a lap strap and a chest strap as well as a head strap
I can control the chair with my right hand, my arms aren't braced for now.
A week later we went out to eat it was my first time in the wheelchair and new braces in public. we found a nice restaurant and ate there and then went
to the sea side to watch the sun set. that night I was put into the prone cart and the legs were locked at zero degrees and I was strapped in for the night.
The next morning I woke up and decided to stay in the cart since I wasn't going anywhere. I was wheeled outside for fresh air. after that I was wheeled back in
and ate lunch then decided to take a nap. I'm getting used to not being independent my condition could get worse if I was walking freely. I'm immobile from head to
toe at least I can bend my legs to sit in the wheelchair, the heaving bracing on my body is pushing and pulling on my spine to keep it straight and my neck and
head are fixed in one direction. the head part can be changed as well as the lower park, the ortho designed it that way in case I needed to be fully straight.
a Year later the Dr called and wanted a checkup, I was laying in my prone cart strapped in like I do for the evenings, the Dr asked if I was in the cart still
I said yes, he said come in on the cart. we loaded the cart into the van with me strapped to it, when we got to the clinic we went in and waited the Dr came out
and wheeled me into the room he said he wanted me in the cart because there will be upgrades to my brace that will require the cart, they took the leg braces and
hip braces off and then they came pack with a leg braces and hip combo that can be riveted to my body brace. I will need to be strapped to the cart 24/7
they also added straps to the cart and made them so they couldn't be taken off without a tool. I was wheeled back to the waiting room I was wheeled out to the van
and put in it for the ride home. They added monitors so I could see where I was with the cameras on the cart and one for me to connect to my TV to watch TV. They
also gave me a a blanket that can be cooled or heated to be draped over me. we have the blanket cooled for the summers to keep be cool and heated for the winters
to keep me warm.
One year later the Dr called and asked how things were going and if I had any issues. I said things are going well but would love to be able to site normal again.
He said come in and bring the wheelchair. we loaded the chair and me in the prone cart into the van for the ride to the clinic. We got there and the dr was waiting already
he said we're going to take you out of the cart and put you into the wheelchair again. they wheeled me in to the room then undid the straps on the cart
and lifted me out of the cart with a lift and onto the bed. they took the leg braces off and then modified the leg braces and turned them into AFOs that
would require cast shoes to walk. they lifted me into the wheelchair still in my heavy body brace they said we'll have you go try to walk this afternoon. We went
to the therapy room and they had me park the chair in front of a treadmill. they then helped me into a harness on the treadmill and started helping me walk, they
said this will probably take a few weeks before I could walk but will need the wheelchair for long distances and prone cart for nighttime.
Three weeks later we went to therapy and I was able to walk with the help of AFO braces and forearm crutches this time, When my muscles regain control they'll have
me wear the AFOs a night along with my Permanent body brace. a month later I was able to walk without the crutches but still needed the wheelchair for long
distances, the AFOs were modified into night braces as well they looked like casts but they were made of carbon fiber and had straps ti hold them on. they told me
that they'll see me in two years and to continue to use the wheelchair if needed and still need the prone cart for night only.
Now that I am a little more independent I was able to go out more, but brought the chair to use while roaming the mall because it's still a lot of walking
I don't use the chair at home though. the Body brace still goes from my waist to my head, they were going to reduce it but realized my body adapted to the brace
and my body wouldn't support my weight without the brace.
six months later I woke up and my legs and arms were tingling so I called the Dr and he said come in right away and stay in the cart if I'm in it. we went to
the clinic and he met me there, and told me I will need to be put back into a body cast this time cover all my limbs, I also noted my breathing wasn't well so they
decided to do an emergency tracheotomy, in the recovery room I'm on a ventilator, they said my lungs couldn't take the strain of the brace anymore
after a few weeks of recovering I was wheeled to the casting room and they began to take the brace off for the body cast, they asked me what color I'd want
since it'll be on me for a while, I chose blue to try to blend into the blue prone cart they began casting me starting with my feet then legs, and then they
casted my torso and shoulders as well as arms and hands, then they did my neck leaving room for the trach and then wrapped casting around my head keeping
my mouth and nose open. after four hours in the casting room, I laid in my hospital bed to let the cast set, after it dried they moved me to my cart, and strapped
me in and re connected me to a portable ventilator on the cart, they also put a NG feeding tube down my nose on both sides, I will need to be fed my this way at night
only. after that I was sent home and told to see them in six months.
Three months into being in a full body cast and trached and being fed my NG tube at night and my my nurse during the day I've come to the realization this will be
life I'll have to live. My nurse takes me outside in the yard in the mornings and then in the afternoon I spend the time watching tv while the nurse checks my vitals
every hour. I also need assistance going to the bathroom I'm using a catheter for that, and a dieper, my prone cart has new straps on it that are medal and firmly
connected as well as locked 24/7. I don't go out that much because it's a lot of work with the cart I'm on and it takes up more room than the chair. I usually
take naps now because it's so exhorting with the trach breathing for me. I forgot what it was like to put a pair of shorts on and a shirt, I had all my cloths
donated to good will because I wouldn't need them with the body cast that they plan on changing every six months for at least a year.
Time to go see the Dr and get my cast changed as well as be measured and fitted for a special body brace that will cover my entire body from head to toe and a new
procedure to be done. This time we needed an ambulance to bring me because I needed extra care. they brought me to the clinic ans wheeled me in, the Dr said we'll take
the bod cast off and put a compression suit on for the evening before my sugary for the G-Tube. the compression suit will help keep my muscles relaxed as well
as muscle relaxer. the next morning I was helped out of the compression suit and prepped for sugary, they wheeled me into the OR and began getting me ready
for the G-Tube placement. Two hours later I was in recovery form the sugary and was already hooked up to nutrtants with the G-Tube, they then told me I will not
be able to eat by mouth anymore or drink, they also said the next brace will require a bite plate to be placed 24/7 and asked if I want my mouth part closed on the
beace because of that, I said might as well, they're also going to get me a communications device that'll be used my eye sight because my arms will be useless with the new brace. A few days later I was wheeled into the casting room for the cast for the brace that will be covering all of my body including mouth and nose now that I'm breathing with a trach, they'll keep the eye slots open because I'll need them for the communication device. after the cast for the brace dried I was cut out and put into the compression suit. I was told see you in a hour for the cast, in that hour I was placed into my wheelchair and strapped in, this time my hands and arms were strapped in too. They had me control the chair my mouth. We went to the ortodontist next door to get impressions for the bit plate that'll be glued in for the foreseeable
future. after the appointment we went back to the clinic for the casting processes. I was moved from the chair to the casting frame then had the compression suit taken off
they started casting me like the last time beginning at the feet and up to my torso they left a spot open for the G-Tube then up my neck leaving a spot for the trach
they then went around my head like before but covered the skull this time. three hours later the cast was dry and I was ready to be put into the prone cart again.
After that I was loaded into the ambulance for the ride home. I'll be six months until I see the brace.
Six months later it was time for the brace and a new prone cart. The ambulance came to take me to the clinic. When we arrived I was brought straight to the casting
room to get the cast removed after that I was cleaned up and put onto a new prone cart that had even more straps and monitors. first they put the bite plate in and
glued it into place. then they wheeled me to the ortho room. my brace was out and ready it was carbon fiber and also had rivets and clamps to keep it on me it was also
a tighter fit they said because it will need to be in place for the rest of my life, because my condition isn't curable. they lifted me up and put me in the back half
and positioned my legs and hands firmly then they started building the top half starting with the feet and legs they also had a spot for the G-Tube when they got to my torso
the brace then went around my head mouth and nose only keeping a spot open for my trach, eyes, and ears. They then began clamping it shut. it was so tight but I would
get used ot it after a while. they then lifted me up and put me onto my cart and strapped me down multiple straps they were made of rust proof medal and fit
my carbon fiber brace perfectly. no need for cloths now because the brace isn't see through. after everything was set the ambulance came to take me home.
Three months into the new brace I've gotten used to not being able to move and I'm learning the communication device well. I take muscle relaxers daily and am fed
by the G-Tube twice a day and at night I'm fed with a special diet and in it is meds to help me sleep, I usually get taken outside in the mornings and sometimes
go for walks with my nurse pushing me. It;'s been two years since I was able to walk and three years since my diagnosis out severe scoliosis. my back is fully straight
but needs to be immobilized 24/7 to stay that way. I've been able to go out with the assistance of the nurse and get fresh air, I've now mastered the communications device
the dr called and said he will need to see me once a year to see if there are any improvements. he wants to get me back into a wheelchair eventually but that's up to
my body if it can handle it since I've been lying flat on my back for over a year now between casts and braces.
After being in the cart for four years now it's time to go see the Dr. at the clinic and see what is next. I was loaded into the van and we went to the clinic
when I arrived I was wheeled to the exam room they then undid the straps on the cart and unplugged the vent and re attached it to the one they have. The Dr took
X-Rays and said that I will need to stay in the Brace he didn't see any improvements, but they'll upgrade the chart this time they gave us a cart that can be tilted
to a 45 degree angle and had even more straps to accommodate that. they lifted me off the bed and onto the new cart this time it had form fit foam encasing my back half
and foam with straps covering my body except my trach and head, I still have a head strap bit with the new cart and foam fit design I'm now covered my the foam and strapped
down. they then plugged me up to the vent and my G-Tube was plugged in also. They then tested the cart and I was able to see from a different angle for the first time in
years, they then remounted the screams for my communication device. they then said I could head home. I was loaded back into the fan and we went home.
Now in the new cart it's easier for me to see my surroundings when at a 45 degree angle, that is only done when I'm stationary at night I lay flat. I've been in some sort of
brace for six years now and my body has completely going accustom to it. I've been able to adapt to not being able to move or walk but this was needed in order for the scoliosis
not to get worse. the Dr has no idea how long I will need to be like this but it's what I'll have to deal with for the foreseeable future. I have setting into a schedule
the nurse gets me up in the morning and feeds me, then we go outside for fresh air and then she'll bring me out for a walk by pushing me after the walk we go
back to my house for lunch and then I usually take a nap and then watch TV, I'll be set at the 45 degree angle when watching TV. She changes my Trach once a day to keep it clean
I also take muscle relaxers twice a day because of my body being immobile and has been for several years. If I'm let out of the Body Brace I will meed to be in a wheelchair for
the rest of my life so I find it easier to be in the body brace and strapped to the cart full-time. sometimes we go out but not that much because the cart is a lot of work
to move around crowded places.
A year later the Dr called and asked if we can come to the office for a checkup, I was loaded into the van and we went to the clinic. We arrived for the non appointment
I was wheeled to the exam room, this room was different than the one I used to be in at other checkups I was unstrapped from the cart then was lifted onto a
exam table, they told me that they're planning to take the body brace off to examine my body, they had to temporary unhook my trach and G-Tube, they then undid the clamps
that held the brace on me and re attached the trach they then lifted me up in a sling to take the back half out and put me back on the table, this was the first time I was out
of the ridged brace in for seven years. they then checked my weight and all the important stuff. they told me they want to get me back into a wheelchair and a standard
CTLSO brace but the brace would be on me 24/7 not able to come off, and I would need to be wheelchair bound while I gain my muscles back, they started the casting right away
. They tightly wrapped plaster around my abdomen and went up around mt shoulders and around my neck with a spot for the trach and up the back of my head and around the front
after it dried I was cut out of it and then cleaned up, and they then did my legs for the HKAFOs that would be warm during the day only after those were made I was
then placed back int the full body brace and hooked back up to my vent and G-Tube and was told see you in three weeks then I was put back into the cart and strapped in
they said the bite plate will come out when I get the brace as well. I was loaded into the van and headed back home. I'lll used the cart for night but the wheelchair
during the day, they decided to get me anew chair one that will be needed to be controlled by mouth. it will also recline and have added straps as well as a place for
the ventilator.
Three weeks later was the big day I've been waiting for for seven years, the day that I got to be able to be in a wheelchair again and hopefully soon walking again
I was up early because the appointment was a 9 AM appointment and we'd be there for half the day. I was loaded into the van for the ride to the clinic I was there
early but they took me right away, first they unclipped the body brace then they unhooked the vent and G-Tube took the top half off and hooked the trach back up
they lifted me out of the bottom half and onto the bed, they said putting the new brace on will take about two hours it have to be secured on with no removable clamps
and rivets. they started at the hips and then put a metal bar in the front and one in the back and started connecting carbon fiber pieces to my body and then went up
over my shoulders and around my neck they then re hooked my vet and then continued up and around my head, they then had the orthodontist come and remove the bite plate and put
retainers in that can be removed for eating, I'll only use the G-Tube for medication to keep my weight in balance for the brace but I'll get to eat real food for the
first time in seven years, I'll need to learn to talk again and will need help eating at first. the brace is made of carbon fiber and rust proof steal. they then put my new
HKAFOs on and connected them to the new brace they can be removed but prefer them to be on 24/7 as well, they get put my hands in to thumb spicas that went to my elbows.
after they checked things over they lifted me up and put me into my new wheelchair they chair can recline and stay normal they strapped my ankles in waist in body harness on
and head strap as well as strapping my hands on the arm rests, they then showed me how to move the chair by mouth. I was then told they want to try to get me walking
in three months. and scheduled me to stay at a rehab place when that time comes.
It's been a month since I was out of the full Body brace and in the CTLSO and leg braces as well back into the Wheelchair and I've been able to go out more than I used to
still need a Trach because my body now has been accustom to it so that'll probably be in place from now on as well as the G-Tube, at-least I can eat some real food again
I've been able to go out with friends a lot more now, I still get put into the cart for the night but the chair is used during the day. soon I will know when I'll have to
go to rehab to learn to walk again. I'll have to use the chair for long distance though because of the trach. I'm in the Wheelchair 12 hours a day and the Cart 11 hours a day
the one hour is for the shower. my schedule usually has me in the cart two hours before I go to bed and about an hour after I wake up. they nurse then uses a lifted to put me
in my chair.
It's been three months since I was out of the body cast and it was time to go to rehab so I can learn to walk again. My dr called me and told me to stay in the cart for
the ride to rehab. the ambulance came to pick me up and the van followed with my chair. two hours later I was at the rehab center and was unloaded and wheeled in and then taken
to my room. They kept me in the cart and said the next day I will start trying to walk on a treadmill. the next day I was woken up and was moved to my chair and was taken
to therapy, they lifted me up and put me in a harness and moved me to a treadmill. they started with the treadmill because my muscles were weak from in activity and needed assistance
at first, they said that the plan is to get me walking in three months, and to learn to walk with the CTLSO and leg braces. the first month I was on the treadmil with assistance.
the second month they wanted me to try parallel bars, I was able to walk with holding onto the bars at first but as time went on I started to walk without touching them
they said they want to try forearm crutches next and they had me walk with them, I was able to do a small distance with them. I've been in rehab for two months now and I'm
almost able to walk freely with the assistance of leg braces. they said by the time I'm done here they hope I don't need leg braces attached to the CTLSO.
Three months later they took the leg braces off and had me walk without them but with crutches, it was hard at first but then got easy as the time went on. They then wanted me
to learn to get in and out of bed, they did that for a few weeks and then wanted me to try walking without crutches. I was able to do that. It was time for me to go home after three months
I was able to walk out pushing my wheelchair, they also noted I was able to get around without the trach in so that'll be used for night time use still but they want to take it out soon.
It's been a month since my braces were reduced to the CTLSO and it was time for me to get my trach removed my lungs have regained their strength and they're not worried about my back collapsing
because of the brace. they also want to remove the G-Tube. I headed back to the clinic and they took me in and then began removing the trach and G-Tube. after that was done
the Dr said that everything looks good and was able to head home I now don't need the cart but still used the wheelchair if I need to go long distances.
The chair now has hand controls but when I'm home I move freely in my house. I've gone out a lot now that I'm independent but I know I'll be in this brace for life.