selective dorsal rhizotomy

I'm putting this disclaimer at the beginning my other surgery that I talked about in this post also is part of the reason for my loss of functional ability! This blog has my story and opinion if you don't like it then don't read it! My parents did what they thought was for me and they never left a store unturned! Being in a wheelchair is the card I was dealt and I'm perfectly happy with it! I will NOT TAKE MEAN COMMENTS OR JUDGMENT my family and I do the best we can 

1. Selective dorsal rhizotomy surgery isn't all it cracked up to be! I had a selective dorsal rhizotomy at age 5 or 6 when I had to have the surgery done before age 7 because it was thought back then at 7 certain brain patterns set in so the surgery wouldn't be as effective after age 7. While initial a great success it has now caused me more problems! I had the surgery in I believe June of 2002 I spent a month or more in the hospital doing intensive physical therapy to get myself back to where I was before surgery because they cut my sensory spinal nerves I lost all my  spasticity which is the point of the surgery because if you don't have the spasticity it's easier to control your movements and have more control over your body (your not fighting your own body as much essential) but it also means I lost all my strength because I was using spasticity instead of my actual muscles! After the months of PT and hard work! I was still walking with a crouch. gait so my orthopedic doctor remembered that I should have my hamstrings and heal cords released so I could stand up straighter which was supposed to make walking easier it did at first! Then around 4th grade is when things started to go down hill around the middle of the school year I started having terrible knee pain! At the beginning of 4th grade I was using what I believe is a reverse walk because of the knee pain I was no longer able to support myself while walking so I started to use a rifton pacer gait trainer with arm chest and thigh supports that gave me more support which in turn gave me less knee pain! Then in the beginning  5th grade I began having more pain so I was becoming weaker so I ended up having to use the Rifton gait trainer with every support it came with! Using the gait trainer lasted from 5th grade though 10th grade! At the age of 15 I started out patient PT on top of school based PT (there is difference between those two PT I'm  not exactly sure what so if you want to know more about it you'll have to do your own research) My outside PT was able to get me walk with just a regular walker again but honestly that a whole other post because it's been an roller coaster of ups and downs that I'm still dealing with today! I gave everyone a ton of back story but it's to explain this next part! The reason why I said SDR surgery isn't all it's cracked up to be is because it a me to have a pretty big spinal deformations which can not be surgical fixed because it would involve moving my spinal cord I have the opposite of scoliosis which is called  lordosis basically my curves inward instead of sideways! Having lordosis has made it extremely hard to just sit in a regular wheelchair or anything other then my power wheelchair or a recliner! The other reason is it is supposed to be a permanent solution for spasticity but in my case that isn't the case and I'm currently in the process of getting a baclofen pump which my family wanted to try to avoid that's why I had to SDR surgery 17 years later and I have to get a baclofen pump anyway! Ps. Thought this entire journey I've the most amazing support for family, friends and of coarse my fantastic PT's and OT's! Thanks to everyone who takes the time to read this post! I will do some follow up post as my journey continues!
   

My Artwork examples all done by me!!!!

The process of getting a new power wheelchair part 1 (The trial of different wheelchairs)

Hello everyone,

I'm starting a series of blog posts that will walk everyone though the step by step  process of getting my new power wheelchair.

                     In this post I'm going to tell everyone all about my wheelchair trial on Friday the August 21st 2015!! My wheelchair trail was at 10:00 am I got there at 9:15am you could say I was a little excited!!! The 1st step was my OT supervisor ask a bunch of questions about my current chair and why I didn't like it . Step #2 was she took a bunch on measurements so the chair will fit me just right unlike my current chair that fit me very poorly. Another thing they do during step #2 is she took a very close look at my body to see if i have any deformities that might need custom things on my new chair. I did have so issues that needed to be addressed I have a spinal deformity and some leg a and foot deformities.The next step is the fun part trying out the different wheelchairs. The 1st chair I tried is called the Quickie QM 710 while I liked that chair a little I would have had to get custom seating witch we wanted to try to avoid if at all possible. The next chair i tried is called the Permobil F3 I really liked this chair because it fit me like a glove while their and some thing that need to 

be put on this chair to make it perfect they are relatively simple compared to getting custom seating. The biggest reason why I liked this chair is because my back touched with any added peaces. After testing both chair I came to that conclusion that the Permobil F3 was the right chair for me!!!
In my next post i will talk about the ordering and insurance approval process!!

I'm sitting in the Permobil F3!! 

Not letting my wheelchair stop me from living a regular life

Back in 2012 I met a wonderful lady she was covering one of my classes and we became friends over a TV show! Later in the school year I started to see her on a more regular basis and found out that she was the coach of the varsity girls lacrosse team! A couple weeks later I met one of the girls on the team and became friends with her then  between the coach and her I was asked to join the team! When  I went to my first game I was very excited and scared because I  didn't know what the girls would  think of me because I only knew the coach and one  of the star players it turns out they liked me for who I am. Being  on the lacrosse team let me have the normal high school experience to a point. It made me feel like there's nothing that I can't do! I was on the team for both my Junior and senior year of high school and they were the two best years of my life because I always knew that these girls  were really there me anytime I needed them!! I love being able to say that I am there number one fan!!!

My team at sectional championship

Friendship

I'm going to start  this blog out with the question what does friendship mean to you? Friendship means to me someone that's always there for you no matter what! When I  started school I never thought I would make friends because of the chair and most people just think you're not intelligent when they see the chair. That all changed in 2002 when I met who I thought was going to be my best friend for life I thought. Although we were friends for the seven years we went to the same school in 2009 when we had to leave this school  because it was inhibiting us from reaching our full potential we started to lose contact we kept in contact for about three years after we left the school today I barely talk to this girl. When I started eighth-grade in the mainstream classroomI realized that most people didn't want to be my friend. When I started my freshman year of high school I was back in special-education and I made some friends but not truly best friends and again I don't talk to them anymore. In 2012 when I moved into my new house the house  I am currently living in now I had a lot of trouble making friends that was until February of  2013. On February 4, 2013 I met the girl who is my truly true best friend she's always there for me through thick and thin. The best part about our friendship is that she doesn't see my wheelchair she just sees me for me and encourages me not to be ashamed of my wheelchair and be comfortable in my own skin and the people who truly like me will be friends with me no matter what! In March 2013 I was asked to join the my high school's Girls lacrosse team. I  was on the team for my junior and senior year high school I have also made some very close friends because of that and I love those girls with all my heart. Thank you to everyone mentioned in this post of course I did not use your names but hopefully you know who you are!!!

Two surgeries in less than one month.

Sometime  back in late OctoberI started having trouble seeing and  getting terrible headaches. I told my mom and she made an appointment for me to see my I eye doctor.I went into the appointment just thinking I would need new glasses. The appointment was on November 5th 2014. After doing all the normal things I do for the doctor I heard him tell my mom that he thought my retina in my left eye  was to detached. He wasn't exactly sure so he decided to dilate my eyes so he could look in the back of them to make sure that it was detached . After they put  dilating drops in your  eyes you have to wait 30 minutes for them to actually dilate. Well that 30 minute wait was  probably one of the longest 30 minutes I've ever had to wait! I started to panic because I knew that if it was detached  I would have to have surgery which I did not want to happen. After the 30 minutes was  up we went back and he looked in back of my eye  and found out that indeed my retina was detached . He had another  doctor look to make sure that what was wrong. After  he had another doctor look at it he told me that I needed to go see a retina  specialist that day because I may have to have surgery that night. On my way to the retina specialist office I called my family and friends to tell them that I may have to have surgery  that night. When we got to the retina specialist office they took us rather quickly. To  be honest with you I was hoping that with the other two doctors was not my retina being detached so I would not have to have surgery. He took one look at my eye and knew I would need surgery luckily  I did not have to have surgery that night but I would  have to have it the following Monday. I left the doctors office quite scared! The day of surgery came and I  was very scared because I hadn't had surgery in a very long time! My surgery started at 3:45 PM and ended at 9:15 PM I did not leave the hospital until 1:30 AM needless  to say it was a long day! The next day I went for my one-day postop appointment which is really the same day as I got in the hospital considering I got out at 1:30 in the morning.  Everything  looked good! That same day I started to develop a cough but my mom and I just thought it was because I was under anesthesia for five hours and had a breathing tube down my throat.  A  couple days went by and my cough  didn't get any better and in fact  it got worse so  my mom decided to take me to the emergency room turns out I had pneumonia! My pneumonia wasn't bad enough for me to have to stay in the hospital so they gave me anabiotic's and sent me home I was very happy because the only place I wanted to be was in my own bed. After a few days my pneumonia and eytboth started to get better but then I live  in New York State so I got hit with a big snowstorm in November. I was stuck in my house for five days and I miss my one week postop appointment because I  couldn't get out of my house. I went  the week after I was supposed to and well the doctor was looking at my he just kept looking and looking and looking so mom knew that there was something wrong I didn't think anything  about it turns out now the bottom half of my retina had become detached. The  first time it was the top. That  meant another surgery the following Monday. I was not happy at all. That surgery started at 11:45 AM and ended at 5:15 PM. I don't know what time I get out of the hospital because the surgery was more extensive so I was in a lot more pain and on more pain medication. I really don't remember the next few days after the surgery because of the pain medication I was on. That Friday my mom came to wake me up to see how I was feeling and when I turned over to look at her my eye was bleeding so it freaked her  and me out. She immediately called the doctor and he told  us to come in so  we went in there was  nothing wrong tissue from around my eye was bleeding but not my eye so he sent us home. The following Wednesday I went for my one week postop appointment and finally some good news everything was healing properly!!! I also want back in at the beginning of this month  and everything was still healing the way it should!!!! 

A general overview of the las 19 years.

I was born April 12, 1995 at just 23 weeks gestation. I only weighed1 pound 2.5 ounces. From day one I've been a fighter I came out kicking and screaming and even though I  don't kick and scream anymore I still have quite a bit fight in me. Over the last 19 years I have exasperated  many joys but also many setbacks. I have spastic diplegia cerebral palsy due to a grade 2 brain bleed  three days after birth. My CP mainly affects my legs but it also does affect my right arm quite significantly. My main mode of transportation is a power wheelchair  I can do some walking but it's only for short distances and it is quite difficult. In the last 19 years I had 9 surgery only two related to my others are due to my prematurity. The two surgeries I had related to CP is a selective dorsal rhizotomy and hamstring heel cord releases. I was in general education for kindergarten first and second grade and from the repeated second-grade through my senior high of school I was in special-education with the exception of 8th grade. I graduated high school in June. As for right now I go to a day hab  program which is not  my favorite but I'm working on trying to get a job. This is a general overview of the last 19 years in the post to come I will go more in depth of about something in this post like education and surgeries in posts to come.