I know I have not updated on this blog, and I will soon, but I have updated my new blog today. The followup post to the first post last week, just in case anyone is interested.
http://lifebeginsanewtoday.blogspot.com/
Friday, December 9, 2016
Sunday, December 4, 2016
Started a new blog
I began a new blog:
http://lifebeginsanewtoday.blogspot.com/
with a similar focus on change, but wanted to start fresh (don't we all). I will continue this Life in Transformation blog as I get back into my weight transformation and my other life transformations, which has taken a back seat to so many other things, and hope to soon get back to posting on a regular basis, both here and on my new blog.
Please visit me there while I get back into blogging, and don't forget to keep an eye out for more posts here as well!
http://lifebeginsanewtoday.blogspot.com/
with a similar focus on change, but wanted to start fresh (don't we all). I will continue this Life in Transformation blog as I get back into my weight transformation and my other life transformations, which has taken a back seat to so many other things, and hope to soon get back to posting on a regular basis, both here and on my new blog.
Please visit me there while I get back into blogging, and don't forget to keep an eye out for more posts here as well!
Sunday, February 21, 2016
Starting Over...again...
I have met people in the past whose lives seem to follow a linear progression, at least on the outside. They had a reasonably stable home life growing up, with a middle class income, meaning their needs were always met, they had decent vehicles that they could afford to keep in good working order, and they sometimes got to do or have some the fun things that they wanted as a family. They finished high school, went to college with only a small amount of student loans when coming out, got a job in their chosen field, met a people to share their life with who was a pretty good match, bought a house, raised a family in a reasonably stable home life, with a reasonably stable career. Actually, no I don't think I actually know anyone who has lived that...
Somewhere there is always a hiccup, a stuck point on a repeat cycle, or just those fantastic times when life changes your perspective so you change your life....
Since beginning this blog many years ago, I have realized some of my :stuck points that are on repeat. Anyone who has followed my blog for a long times probably is saying"it took you this long to see them?!?!" Well, no (and yes, but no), many of them I have been aware of for a long time. And one of my limiting beliefs is that I do not have enough time to "fix" them, the other thing that keeps me stuck is I keep trying to "fix" them.
So, instead of focusing on fixing "them" (as I picked up a huge number of prescriptions from the pharmacy today), I am going to stop focusing on "them". Stop focusing on the problems, and truly start focusing on what I want , which is to feel GOOD. So for my Health:
Instead of focusing on being overweight, having diabetes, blood pressure issues, headaches, feeling hungry all the time (with diabetes, you brain is screaming for food because it is starving because the sugar in your blood can not enter the cells in your body and brain, so your brain is sending hunger signals all the time because it literally is not getting any nourishment, which is one of the reason many people with diabetes are overweight and why it is so hard to lose weight, the body chemistry is screwed up) and all of the other challenging things that my body seems to be doing. I am going to focus on what helps me feel better.
1) What can I DO that gives me more energy? Taking a 5 minute walk; Getting the right amount of sleep; Taking my medications on schedule; Eating well planned meals and snacks; drinking enough water; etc...
2) What can I do that makes me feel less hungry? Eating on a schedule; Eating fiber filled food like fruits, vegetables, chia seeds, whole grains; Drinking a mix of water with 2TBS Apple Cider Vinegar and 1 TBS Honey, sipping it throughout the day (amazing how much it helps control hunger signals); balancing protein with carbs for everything I eat; soup or broth as or with meal and snacks
3) What reduces my pain levels? Walking and or stretching for 5 minutes; having my feet raised when sitting; changing position (sit to stand to walk to laying) frequently; reaching my arms over my head periodically;
4) What clears my head? Reducing time spent in front of a screen (15 minutes on, 15 minutes off doing dished, dusting, organizing, playing with the dog, playing with the kids); focusing on positive ideas or finding the positive aspects of situations; stepping outside to just breathe for a few minutes;
Somewhere there is always a hiccup, a stuck point on a repeat cycle, or just those fantastic times when life changes your perspective so you change your life....
Since beginning this blog many years ago, I have realized some of my :stuck points that are on repeat. Anyone who has followed my blog for a long times probably is saying"it took you this long to see them?!?!" Well, no (and yes, but no), many of them I have been aware of for a long time. And one of my limiting beliefs is that I do not have enough time to "fix" them, the other thing that keeps me stuck is I keep trying to "fix" them.
So, instead of focusing on fixing "them" (as I picked up a huge number of prescriptions from the pharmacy today), I am going to stop focusing on "them". Stop focusing on the problems, and truly start focusing on what I want , which is to feel GOOD. So for my Health:
Instead of focusing on being overweight, having diabetes, blood pressure issues, headaches, feeling hungry all the time (with diabetes, you brain is screaming for food because it is starving because the sugar in your blood can not enter the cells in your body and brain, so your brain is sending hunger signals all the time because it literally is not getting any nourishment, which is one of the reason many people with diabetes are overweight and why it is so hard to lose weight, the body chemistry is screwed up) and all of the other challenging things that my body seems to be doing. I am going to focus on what helps me feel better.
1) What can I DO that gives me more energy? Taking a 5 minute walk; Getting the right amount of sleep; Taking my medications on schedule; Eating well planned meals and snacks; drinking enough water; etc...
2) What can I do that makes me feel less hungry? Eating on a schedule; Eating fiber filled food like fruits, vegetables, chia seeds, whole grains; Drinking a mix of water with 2TBS Apple Cider Vinegar and 1 TBS Honey, sipping it throughout the day (amazing how much it helps control hunger signals); balancing protein with carbs for everything I eat; soup or broth as or with meal and snacks
3) What reduces my pain levels? Walking and or stretching for 5 minutes; having my feet raised when sitting; changing position (sit to stand to walk to laying) frequently; reaching my arms over my head periodically;
4) What clears my head? Reducing time spent in front of a screen (15 minutes on, 15 minutes off doing dished, dusting, organizing, playing with the dog, playing with the kids); focusing on positive ideas or finding the positive aspects of situations; stepping outside to just breathe for a few minutes;
Saturday, February 6, 2016
After a long hiatus...
Well, it has been a long time since I have blogged!
UPdate on personal life stuff that I have previously mentioned on this blog:
J is doing well following his surgery a year and a half ago. He was in the spica cast for 6 weeks, then confined to his wheelchair for six months. Finally in late Spring 2015, he was able to start putting weight on his legs again. Bu summer he was running with his walker again. His balance has improved considerably. He can actually stand for over 2 minutes (prior to surgery his record was 18 seconds). His legs are straight for the first time in his life, and his toes point outwards. So it is an amazing improvement. The surgery has increased his standing and walking, however it has created some small problems. He now can not bend his knees all the way, he has lost the ability to crawl and to be independent if he is on the floor. So getting from the floor to stand is a much harder and longer process. If he falls, he often needs help getting back up, which he did not before. And while his ability to stand and walk is much better, his independent mobility (due to lack of ability to move easily while not standing) has lessened. But he is no longer in danger of his hip popping out of joint, and his feet both face forward instead of the left foot pointing behind the right heel when he walked. He also is working on using arm crutches which will open up more places to him than using a walker. He still can not do long distances, so he uses his power wheelchair for things like going for a walk in the neighborhood, going to fairs or zoos, and going to anything that requires a lot of walking. My hope is that by the end of the year, with his improved balance, he may be able to retire the walker and be walking exclusively with the arm crutches. Also arm crutches will be easier to attach to his wheelchair than trying to bring two large pieces of equipment like the walker.
Married life has had a lot of ups and downs. My spouse is battling alcohol addiction which got very bad during the first year after we got married. We are now separated temporarily while my spouse goes through the needed help of rehab. Already finished 2 inpatient stays with some hard times in between, and now going through an intensive outpatient program. It is helping greatly, and just has been taking time to get focused fully on recovery. It is not an easy step for a person to jump from full blown addiction to recovery, but she is now committed to walking the path, and after some sober time and time of self-discovery, we will work with a counselor to heal the wounds that addiction and addictive behavior did to our relationship.
Other things that have happened since my last post 16 months ago, I took a full time job working as a teaching assistant at the same school that my son attends. I work in the preschool building, while J is in the school age building, so we rarely cross paths. I greatly enjoy the work--helping children with special needs has grown into a large passion of mine over the past 10 years. I work in a room where the kids primarily have social/emotional/behavioral challenges that are severe enough to restrict them from being in a regular preschool or even a head start or integrated preschool. So while I deal with many aggressive and disruptive behaviors all day, I love working with the kids. They have so much to offer, and helping them learn how to calm themselves and increasing their impulse control so that they can shine is very rewarding. While some will go on to integrated kindergartens, most will still need more support as they reach school age. So everything we can do to help them at this age can set the stage for them to start their school careers off better.
Alos, during the holiday season the boys and I moved much closer to work. While it was a hard decision, the 60 mile commute (one way, so 120 miles a day!) combined with the roof (horrible leaks that were destroying the ceiling too) and plumbing problems at the house that I could not afford to fix really pushed me to make the move. I still have the house, after all we put so much time, effort and money into the house that I am trying to figure out what to do with it now. Hoping to be able to afford repairs and rent it out The place we moved into is a rental, a duplex. We live in the smaller side, but it is still 3 bedrooms. It is 2 floors, so thankfully, J's new balance allows him to climb stairs, and it is helping to strengthen his legs a lot. The bedrooms and bathroom are upstairs and the living room, dining room and kitchen are downstairs. It is not handicap accessible, though we are trying to get a ramp up the outside steps as there is no railing on the outside steps. It is not ideal, but the benefits to living here outweigh the difficulties. The distance to work saves us all both a lot of time and a lot of money. School is much closer for both of the kids, as neither of them could go to the school in our own community because it was very rural and sis not have the special education programs that the boys needed, so J used to go 60 miles each way to school and G went 25 miles to school each way. Now J and I are only 7 miles from work and school, and G's school is less than 2 miles from the house. We are closer to everything (the nearest grocery store to our old house was 40 miles away and the nearest discount store even further, now they are right in the same town. Doctors, pharmacies, everything is much closer here. Also the neighbors who rent the other side are great. She is my coworker at the school and had told me about this opening up, so it is nice to have a friend right next door. Her husband has helped with getting J off the bus as I work later than the school lets out, and they have been all around helpful and enjoyable neighbors. We are also only 20 miles from my ex, so the kids have a 25-30 minute ride to get there and not and hour and a half.
Many more things happened this year--massive fire that destroyed my father's home (the home I grew up in), someone I love dearly who attempted suicide 4 times in 6 months, proms, graduations, new jobs, and many other things going on in the family, my best friend's wedding, many camping trips, seeing old friends that I have not seen in a long time, so many things that life brings to each of us---many blessings, many challenges to help us grow, and way too much to blog about. Welcome back to my life of transformation.
UPdate on personal life stuff that I have previously mentioned on this blog:
J is doing well following his surgery a year and a half ago. He was in the spica cast for 6 weeks, then confined to his wheelchair for six months. Finally in late Spring 2015, he was able to start putting weight on his legs again. Bu summer he was running with his walker again. His balance has improved considerably. He can actually stand for over 2 minutes (prior to surgery his record was 18 seconds). His legs are straight for the first time in his life, and his toes point outwards. So it is an amazing improvement. The surgery has increased his standing and walking, however it has created some small problems. He now can not bend his knees all the way, he has lost the ability to crawl and to be independent if he is on the floor. So getting from the floor to stand is a much harder and longer process. If he falls, he often needs help getting back up, which he did not before. And while his ability to stand and walk is much better, his independent mobility (due to lack of ability to move easily while not standing) has lessened. But he is no longer in danger of his hip popping out of joint, and his feet both face forward instead of the left foot pointing behind the right heel when he walked. He also is working on using arm crutches which will open up more places to him than using a walker. He still can not do long distances, so he uses his power wheelchair for things like going for a walk in the neighborhood, going to fairs or zoos, and going to anything that requires a lot of walking. My hope is that by the end of the year, with his improved balance, he may be able to retire the walker and be walking exclusively with the arm crutches. Also arm crutches will be easier to attach to his wheelchair than trying to bring two large pieces of equipment like the walker.
Married life has had a lot of ups and downs. My spouse is battling alcohol addiction which got very bad during the first year after we got married. We are now separated temporarily while my spouse goes through the needed help of rehab. Already finished 2 inpatient stays with some hard times in between, and now going through an intensive outpatient program. It is helping greatly, and just has been taking time to get focused fully on recovery. It is not an easy step for a person to jump from full blown addiction to recovery, but she is now committed to walking the path, and after some sober time and time of self-discovery, we will work with a counselor to heal the wounds that addiction and addictive behavior did to our relationship.
Other things that have happened since my last post 16 months ago, I took a full time job working as a teaching assistant at the same school that my son attends. I work in the preschool building, while J is in the school age building, so we rarely cross paths. I greatly enjoy the work--helping children with special needs has grown into a large passion of mine over the past 10 years. I work in a room where the kids primarily have social/emotional/behavioral challenges that are severe enough to restrict them from being in a regular preschool or even a head start or integrated preschool. So while I deal with many aggressive and disruptive behaviors all day, I love working with the kids. They have so much to offer, and helping them learn how to calm themselves and increasing their impulse control so that they can shine is very rewarding. While some will go on to integrated kindergartens, most will still need more support as they reach school age. So everything we can do to help them at this age can set the stage for them to start their school careers off better.
Alos, during the holiday season the boys and I moved much closer to work. While it was a hard decision, the 60 mile commute (one way, so 120 miles a day!) combined with the roof (horrible leaks that were destroying the ceiling too) and plumbing problems at the house that I could not afford to fix really pushed me to make the move. I still have the house, after all we put so much time, effort and money into the house that I am trying to figure out what to do with it now. Hoping to be able to afford repairs and rent it out The place we moved into is a rental, a duplex. We live in the smaller side, but it is still 3 bedrooms. It is 2 floors, so thankfully, J's new balance allows him to climb stairs, and it is helping to strengthen his legs a lot. The bedrooms and bathroom are upstairs and the living room, dining room and kitchen are downstairs. It is not handicap accessible, though we are trying to get a ramp up the outside steps as there is no railing on the outside steps. It is not ideal, but the benefits to living here outweigh the difficulties. The distance to work saves us all both a lot of time and a lot of money. School is much closer for both of the kids, as neither of them could go to the school in our own community because it was very rural and sis not have the special education programs that the boys needed, so J used to go 60 miles each way to school and G went 25 miles to school each way. Now J and I are only 7 miles from work and school, and G's school is less than 2 miles from the house. We are closer to everything (the nearest grocery store to our old house was 40 miles away and the nearest discount store even further, now they are right in the same town. Doctors, pharmacies, everything is much closer here. Also the neighbors who rent the other side are great. She is my coworker at the school and had told me about this opening up, so it is nice to have a friend right next door. Her husband has helped with getting J off the bus as I work later than the school lets out, and they have been all around helpful and enjoyable neighbors. We are also only 20 miles from my ex, so the kids have a 25-30 minute ride to get there and not and hour and a half.
Many more things happened this year--massive fire that destroyed my father's home (the home I grew up in), someone I love dearly who attempted suicide 4 times in 6 months, proms, graduations, new jobs, and many other things going on in the family, my best friend's wedding, many camping trips, seeing old friends that I have not seen in a long time, so many things that life brings to each of us---many blessings, many challenges to help us grow, and way too much to blog about. Welcome back to my life of transformation.
Monday, November 10, 2014
Following J's surgery
J's surgery went well.
He had a little trouble with slow wake up after the anesthesia and vomiting from the anesthesia. But overall the surgery went well, the bone in his leg has been cut and re-positioned with a plate and screws, the hamstrings and hip abductors on both legs were cut and lengthened.
He is now dealing with his cast (from armpits to toes) by playing with various electronics, such as the new DS handheld game that his aunt got for him, the wii, the computer (I cannibalized two old, ailing laptops to make one working one for him). Goign to the bathroom is difficult for him, we use a handheld urinal for urine, and the hospital sent us home with a bedside commode for him to use. He is uncomfortable, but here we are 12 days since surgery and he has not had heavy duty pain meds for 3 days, and only ibuprofen at night as that is when his discomfort is highest. The itchy skin as started, and he has a small rash on the bum where the cast edge is (they leave the privates area open so that he be toileted).
Overall, though he is doing well and just waiting for the special reclining wheelchair that he needs in order to return to school (thankfully he goes to a special school and they can handle his needs while in the cast). They said it would take a week, but alas, it is taking longer than expected to arrive. he will be happy to return to his friends and get out of the house!
Even if the wheelchair were here, we would not be able to take him out as the handicap accessible van that we were blessed with (and the blessing of all the donations that helped fund the repairs for the van) had a major problem on the way to the surgery. The transmission died!! So, we have it in a shop thanks to two friends who came out to Syracuse with a car trailer and they took it up to a friend of their who is a transmission specialist. To replace it with a new transmission would be about $2500. To find and replace with a used transmission would be around $1100. And to rebuild the transmission is a steal at about $600. So they are in the process of rebuilding the transmission. And we are trying to come up with the funds for that. Over all though, the van is a great gift in that buying a used one would have been over $15,000. And so far we have put only about $1500 into the van, so another $600 to rebuild the transmission so we can have a way to transport Josiah and his chair (both the rented reclining one while in the cast and his motorized one after the cast comes off) is really a good deal. If you would like to donate to the repair the van fund, please feel free to check out the story of the van here.
He is now dealing with his cast (from armpits to toes) by playing with various electronics, such as the new DS handheld game that his aunt got for him, the wii, the computer (I cannibalized two old, ailing laptops to make one working one for him). Goign to the bathroom is difficult for him, we use a handheld urinal for urine, and the hospital sent us home with a bedside commode for him to use. He is uncomfortable, but here we are 12 days since surgery and he has not had heavy duty pain meds for 3 days, and only ibuprofen at night as that is when his discomfort is highest. The itchy skin as started, and he has a small rash on the bum where the cast edge is (they leave the privates area open so that he be toileted).
Overall, though he is doing well and just waiting for the special reclining wheelchair that he needs in order to return to school (thankfully he goes to a special school and they can handle his needs while in the cast). They said it would take a week, but alas, it is taking longer than expected to arrive. he will be happy to return to his friends and get out of the house!
Even if the wheelchair were here, we would not be able to take him out as the handicap accessible van that we were blessed with (and the blessing of all the donations that helped fund the repairs for the van) had a major problem on the way to the surgery. The transmission died!! So, we have it in a shop thanks to two friends who came out to Syracuse with a car trailer and they took it up to a friend of their who is a transmission specialist. To replace it with a new transmission would be about $2500. To find and replace with a used transmission would be around $1100. And to rebuild the transmission is a steal at about $600. So they are in the process of rebuilding the transmission. And we are trying to come up with the funds for that. Over all though, the van is a great gift in that buying a used one would have been over $15,000. And so far we have put only about $1500 into the van, so another $600 to rebuild the transmission so we can have a way to transport Josiah and his chair (both the rented reclining one while in the cast and his motorized one after the cast comes off) is really a good deal. If you would like to donate to the repair the van fund, please feel free to check out the story of the van here.
Tuesday, October 28, 2014
Surgery and six weeks in a SPICA cast (armpits to ankles)...
So, blogging has not been high on my priority list lately, as there has been so much going on. My big focus lately is on my now 8 year old son, J. He is going in for surgery in two days to manage some damage to his legs from his cerebral palsy. His femur has twisted due to the tension in his legs and it has caused the femur (bone int he the thigh) and his tibia (shin bone) to grow twisted. his left foot now faces his right foot. This is putting a lot of pressure on his hip and it is in danger of dislocating and destroying the hip joint. So they are going to have to cut the femur, turn it, re-angle it into the hip socket, and then put it back together with plates and screws to hold it in its new position.
They also will be cutting his hamstrings and hip abductors as well as a third set of tendons on both legs to lengthen the tendons and hopefully relieve pressure on both hips. The right leg is not as bed so they are just doing the tendons and not the bone work, and on the left leg they are going to leave the tibia for now, as they believe he will need extensive surgery on the foot at a later date, and want to see how this surgery corrects some of the issues before they make decisions a bout what to do with the lower part of the leg and the foot. The primary reason for the surgery is to save the hip and prevent traumatic dislocation. The hopeful additional benefit will be that he will have more control over his legs with the added flexibility, and that he will be able to walk better.
The cutting of the hamstrings will allow him to actually stretch out his legs at the knee (something he has not done in years), and maybe even stand up straight by dealing with the tendons both the hamstrings and the tendons at the hips. The tension in the tendons has caused him to become more and more bent at the hips and legs, so it will be a new experience for him to walk upright (he walks with a walker now but always on his tip toes with knees and hips bent). If he can straighten his legs, he may be able to walk on his feet, and this have better balance and more ability towards independent mobility. He will still need his wheelchair for any distance walking as it is the combination of his physical challenges and his lung/respiratory issues that make him unable to walk long distances like going shopping, going to the zoo, fair, or amusement park, or for walks more than 1/2 a mile.
The surgery is always a risk, as he does have medical challenges with his lungs, and the surgery will have under anesthesia for a few hours, so my first concern is the life and death risk of anesthesia. But we have put off the surgery for as long as we possibly dare to, as he is in pain often due to the pressure on his hips...his legs and back hurt often, and he is danger of dislocation, which would be so much more complicated and difficult and may destroy his ability to walk completely depending on how much damage is caused by it). So we are here, at the edge of surgery, and with a long recovery for him. He will be in a full Spica cast (often called a body cast) from armpits to ankles for 6-8 weeks.
We have been rearranging the house, getting his video games and books and toys ready, modifying our schedules and so on in preparation for his next few weeks. Once the pain subsides and the need for pain meds is no longer (the doctor says should only be the first week), then he will be stuck in this cast and unable to do things. Hopefully he will develop a greater appreciation for the abilities he DOES have now, as he gets so angry and frustrated that he can not run and move like other kids (Josiah is triplegic--or a combination of left hemiplegia and para paraplegia--so his left side is affected, and his lower body (both legs and core muscles)). So even with his walker, he struggles, and he can not hold on to things like most kids, and he is so acutely aware of his challenges. So he has become a perfectionist which gets int eh way even more, as he melts down when he can not be the best or do things exactly perfect. Even if he is winning in a game, if he misses a score he gets so angry at himself. I am not sure where all this comes from, though the neuropsychologist believes some of it stems from his brain damage, as many people with brain damage feel out of control of their lives and so try to be prefect, but with damage to the frontal lobe, have less control over their emotions. So it creates big issues in emotional challenges and behavioral outbursts.
In some ways I am hoping that being so drastically restricted in motion by this cast, that it will help him lay new brain pathways that help him be more comfortable with himself and his abilities. He is such a talented and amazing kid with so much to offer both himself and the world around him, I am hoping he can learn to shift his focus from this obsession with what he can not do, to a focus on what he CAN do. So who knows, maybe this surgery will have some added benefits that are more indirect than the reasons for the surgery itself.
I am still very nervous about it, so we could use some prayers and good vibes and energy being sent his way--focusing on a successful surgery with no complications, clear, strong breathing coming out of anesthesia and his body's ability to handle the anesthesia and the stress on his body, minimal pain and good pain medications for him, speedy healing and maximum benefit--both physically and mentally, and patience during the long recovery in the cast. I will try to post again a few times throughout his recovery, as I will be having to start working from home again as I do need an income during this time period, but he needs me to be here with him and available, so back to trying to find assignment based articles again, and getting back to writing my book and hopefully self-publishing by the end of the year.
They also will be cutting his hamstrings and hip abductors as well as a third set of tendons on both legs to lengthen the tendons and hopefully relieve pressure on both hips. The right leg is not as bed so they are just doing the tendons and not the bone work, and on the left leg they are going to leave the tibia for now, as they believe he will need extensive surgery on the foot at a later date, and want to see how this surgery corrects some of the issues before they make decisions a bout what to do with the lower part of the leg and the foot. The primary reason for the surgery is to save the hip and prevent traumatic dislocation. The hopeful additional benefit will be that he will have more control over his legs with the added flexibility, and that he will be able to walk better.
The cutting of the hamstrings will allow him to actually stretch out his legs at the knee (something he has not done in years), and maybe even stand up straight by dealing with the tendons both the hamstrings and the tendons at the hips. The tension in the tendons has caused him to become more and more bent at the hips and legs, so it will be a new experience for him to walk upright (he walks with a walker now but always on his tip toes with knees and hips bent). If he can straighten his legs, he may be able to walk on his feet, and this have better balance and more ability towards independent mobility. He will still need his wheelchair for any distance walking as it is the combination of his physical challenges and his lung/respiratory issues that make him unable to walk long distances like going shopping, going to the zoo, fair, or amusement park, or for walks more than 1/2 a mile.
The surgery is always a risk, as he does have medical challenges with his lungs, and the surgery will have under anesthesia for a few hours, so my first concern is the life and death risk of anesthesia. But we have put off the surgery for as long as we possibly dare to, as he is in pain often due to the pressure on his hips...his legs and back hurt often, and he is danger of dislocation, which would be so much more complicated and difficult and may destroy his ability to walk completely depending on how much damage is caused by it). So we are here, at the edge of surgery, and with a long recovery for him. He will be in a full Spica cast (often called a body cast) from armpits to ankles for 6-8 weeks.
We have been rearranging the house, getting his video games and books and toys ready, modifying our schedules and so on in preparation for his next few weeks. Once the pain subsides and the need for pain meds is no longer (the doctor says should only be the first week), then he will be stuck in this cast and unable to do things. Hopefully he will develop a greater appreciation for the abilities he DOES have now, as he gets so angry and frustrated that he can not run and move like other kids (Josiah is triplegic--or a combination of left hemiplegia and para paraplegia--so his left side is affected, and his lower body (both legs and core muscles)). So even with his walker, he struggles, and he can not hold on to things like most kids, and he is so acutely aware of his challenges. So he has become a perfectionist which gets int eh way even more, as he melts down when he can not be the best or do things exactly perfect. Even if he is winning in a game, if he misses a score he gets so angry at himself. I am not sure where all this comes from, though the neuropsychologist believes some of it stems from his brain damage, as many people with brain damage feel out of control of their lives and so try to be prefect, but with damage to the frontal lobe, have less control over their emotions. So it creates big issues in emotional challenges and behavioral outbursts.
In some ways I am hoping that being so drastically restricted in motion by this cast, that it will help him lay new brain pathways that help him be more comfortable with himself and his abilities. He is such a talented and amazing kid with so much to offer both himself and the world around him, I am hoping he can learn to shift his focus from this obsession with what he can not do, to a focus on what he CAN do. So who knows, maybe this surgery will have some added benefits that are more indirect than the reasons for the surgery itself.
I am still very nervous about it, so we could use some prayers and good vibes and energy being sent his way--focusing on a successful surgery with no complications, clear, strong breathing coming out of anesthesia and his body's ability to handle the anesthesia and the stress on his body, minimal pain and good pain medications for him, speedy healing and maximum benefit--both physically and mentally, and patience during the long recovery in the cast. I will try to post again a few times throughout his recovery, as I will be having to start working from home again as I do need an income during this time period, but he needs me to be here with him and available, so back to trying to find assignment based articles again, and getting back to writing my book and hopefully self-publishing by the end of the year.
Monday, July 7, 2014
Wedding day, Ice Cream Shop, and Family visits...oh my!!
SO the past couple of months have been crazy with multiple trips to specialists for the boys, some over 3 hours away, planning and having our wedding day June 29th--yes, I am a legally married woman now!
AND my mother and step-father opened an ice cream shop in my front yard on July 3rd---so wow, it has been crazy busy on about a million different fronts.
I am working 40 hours a week at the ice cream shop...talk about working from home right, my commute is about 50 feet from my front door (and we put a privacy fence between the parking lot and house so that people are not peeking in the windows or stepping on the flowers, or freaking out the dogs, or getting in the way of the kids....). So I have a job for the summer. Still working out the kinks with childcare as my SPOUSE is watching them on days off, but begins the summer season at the BBQ this weekend. I have a couple of people lined up, but think I might be relying in my Dad more than I planned to mind the boys. At least Josiah is in summer school for the next 6 weeks, and Gonzo can hang out with me or even in the house by himself...he is 11 after all, so it is mainly afternoon, evenings, and weekends I have to figure out a couple days a week.
We also had a visit from my new sister-in-law and her fiance who live in Florida last week, and my sister and her husband and kids who live in South Carolina are here this week. So a lot of visiting and talking and having family dinners with extended family...a great time, but exhausting as part of the larger way too busy picture!!
Now that life is settling in to a new normal after all of the changes of the past few months, I can start focusing again on my health transformation (so many other transforming events have been taking place, it really has taken the back burner). I will get back to posting more often hopefully, but wanted to do a quick update for my readers to let you know I did NOT disappear off the face of the earth, just going through some very time and energy consuming transformations in various parts of my life.
Blessings to one and all!
AND my mother and step-father opened an ice cream shop in my front yard on July 3rd---so wow, it has been crazy busy on about a million different fronts.
I am working 40 hours a week at the ice cream shop...talk about working from home right, my commute is about 50 feet from my front door (and we put a privacy fence between the parking lot and house so that people are not peeking in the windows or stepping on the flowers, or freaking out the dogs, or getting in the way of the kids....). So I have a job for the summer. Still working out the kinks with childcare as my SPOUSE is watching them on days off, but begins the summer season at the BBQ this weekend. I have a couple of people lined up, but think I might be relying in my Dad more than I planned to mind the boys. At least Josiah is in summer school for the next 6 weeks, and Gonzo can hang out with me or even in the house by himself...he is 11 after all, so it is mainly afternoon, evenings, and weekends I have to figure out a couple days a week.
We also had a visit from my new sister-in-law and her fiance who live in Florida last week, and my sister and her husband and kids who live in South Carolina are here this week. So a lot of visiting and talking and having family dinners with extended family...a great time, but exhausting as part of the larger way too busy picture!!
Now that life is settling in to a new normal after all of the changes of the past few months, I can start focusing again on my health transformation (so many other transforming events have been taking place, it really has taken the back burner). I will get back to posting more often hopefully, but wanted to do a quick update for my readers to let you know I did NOT disappear off the face of the earth, just going through some very time and energy consuming transformations in various parts of my life.
Blessings to one and all!
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