Hi all,
I'm going to do something with this blog today that I've never done and I hope anyone who reads this understands and isn't offended in any way by this. That is not my intent.
As I am writing this, I am writing through constant tears, the lump in the throat that makes it hard to breath and so much anger, like everything has just come to a breaking point today. I can't remember ever feeling quite like this in 16 1/2 years. In fact, I almost never get angry anymore, really. I actually work very hard at "keeping my anger in check" and keeping myself centered and "even". I actually feel that being this angry will help no one and serve no purpose but I just can't help it today. I NEVER tell anyone these feelings when I do have them except my husband, Greg, because I don't want my friends, family, etc. to feel they have to "walk on eggshells around me" or feel they can't tell me things. Plus, I never wanted to be the angry, bitter parent of a child with a disability that I witnessed so often in the past 16 1/2 years. It's funny, that I even REALLY understood and empathized with these parents but I have never been kind enough to myself to let myself "go there". I don't know why, really. I just know I DON'T want to be this angry person I am right now, I don't like it at all.
It started with just one small thing today and it is as if hundreds of things that have made me this hurt and angry over the years has come to the surface and I can't control my emotions. So, I'm writing about it because I am not brave enough to go to anyone and talk to anyone about it, except husband Greg. (Poor Greg, LOL through tears!)
Forgive me please for writing this. BUT, it makes me hurt and angry when people I know don't appreciate their healthy, non-disabled kids, when they take for granted the things their kids can do on their own (like taking a shower, getting dressed, brushing their teeth without choking themselves, putting their shoes on, ETC. on and on.......), when people who have kids who are more physically challenged than Nick tell us how "lucky" we are as if they get a "gold star" because their kids are "more disabled" than Nick. (and yes, we do feel lucky, but COME ON!) When my friend called me and asked me why I couldn't talk because I was bathing my adolescent son and she told me to "just tell him to go take a shower!" as if he could do that, and friends that complain about having to spend money on a pair of eyeglasses for their kids. Are you kidding me? Just thinking of the times we have spent over $10,0000, out of pocket, that we didn't have, on average per year, for things Nick needs like hearing aids, Segway, co-pays for AFOs and wheelchairs, special software for his computer, FM systems, on and on and on and ON, and $130 for special driving school PLUS the cost of the regular driving classroom instruction, therapies that are not covered by insurance. I can't even begin to tell people the financial problems we have had and the countless month we choose to get the things Nick needs over paying the mortgage on time or going to the dentist or doctor ourselves, etc. We don't thing twice about doing this but the stress in indescribable. I've had to leave jobs to care for Nick and miss a lot of work. Family first but employers aren't always understanding. I get so angry and we never tell anyone how stressed we've been at times over these things. It is so hurtful and makes us so angry that people tell us how "lucky" we are to have an IEP and special educational services for Nick and the "handicapped parking sticker in our car". I want to scream, REALLY? Do you want to trade situations? Just have a disabled kid and you can get these great benefits too! (sarcasm if you can't tell!) Then they hand out handicapped parking stickers like candy now, to people without disabilities and who have health problems due to their life choices, as if you can "choose" to have a disability. Then we can never find a handicapped parking spot when we do go out because so many people have these and then we won't even go into the people that abuse it and don't have any sticker and feel they can park there anyhow. That is a whole other issue for another time. All of these things make me so hurt and angry and I can't even talk to anyone about it because I don't want to "turn people off". This often results in me isolating myself, I stay in the house and don't contact friends or go out with them because I can't face then with this anger and these feelings.
One small thing brought all of this out today. I hate being around negative people or people who whine and complain so please understand how difficult it was for me to "vent" in this way, to this extent. It's out there now. And, I feel a little better. I don't have any resolution or answers. The situation hasn't changed but I'm going to go back now to taking it one hour, one day at a time and try to scoop up a positive attitude again. I know it's in me somewhere! This was a very inexpensive and self-indulgent release for me, so if you could stomach reading it, I hope you understand and will let me have this small moment of anger. Thanks. One thing I do know for sure is I wouldn't want anyone else for a son than Nick or a daughter than Bella. I love them EXACTLY the way they are and everything we do for them is worth it, worth everything. I know that for sure, every minute of every day, no matter how I'm feeling.
Blessings:)
Amy
Tuesday, March 23, 2010
Monday, March 22, 2010
Local updates for GTCLL and Field of Dreams Drive-In Info.
Hi everyone,
I'm including parts of an e-mail I received from someone with the Greater Toledo Challenger Little League (http://www.gtcll.com/) with some information regarding a fundraiser in Toledo tomorrow, March 23rd at Wendy's on Monroe St. in Toledo, and some other items. One of the items includes information for a Drive-In that I actually know the owners of. I should have posted this information sooner than now, but a family I know who has a son with cerebral palsy, the Saunders Family of Liberty Center, Ohio have a Drive-In Movie theatre on their property and I regretfully have not yet been but it is a definite goal of mine to go this year. Anyhow, they open this month and their web site is http://www.fieldofdreamsdrivein.com/ which you can visit for more info. and details. Please check it out. I think it is wonderful they are doing this and it is a great family activity which Team Hyndman plans to do this year. I miss the days of drive-in movies in the summer!
Below is part of the e-mail I received with more info. for GTCLL:
Hello everyone! I hope you had a great weekend! Here are some upcoming events for ball!
1. Don't worry if you were not able to attend open house last week! You still can register for ball with you coaches. If they haven't sent you a registration form yet, you should be receiving one soon!
2. Tuesday is Wendy's night. Same place same time! (5-8pm on Monroe St.)
3. April 23rd the Jaguars will be having a spaghetti dinner at the Maumee Senior Center! There will be dine in or take out! Food is being donated by Coach Carol Rambo and Churchill's (Billie Kwiatosi's friend). We will have the best sauce around! Compliments of Coach Carol's friend. So bring empty stomach and all your friends! We are going to see how many dishes Big Bubba Lanning can wash! Does anyone want to sponsor him for each dish he washes??? It will be alot of fun!!
4. Also in May the Jaguars will be have a McDonalds lunch fundraiser. That will be at the Perrysburg McDonalds on Dixie Highway! Time and date will be provided at a later time.
5. Field of Dreams Drive In will be opening up on March 26th. Coach Anileada ran into the owners of this place which is located on V602 County Rd 6, Liberty Center, Ohio. Phone is 419-966-2988. web address: www.fieldofdreamsdrivein.com Anyway, they said that they would admit one free adult with anyone specials needs child/adult. What a fun way to make some fun family and friends memories!!! (end of e-mail)
I'll be posting more soon!
Blessings:)
Amy
I'm including parts of an e-mail I received from someone with the Greater Toledo Challenger Little League (http://www.gtcll.com/) with some information regarding a fundraiser in Toledo tomorrow, March 23rd at Wendy's on Monroe St. in Toledo, and some other items. One of the items includes information for a Drive-In that I actually know the owners of. I should have posted this information sooner than now, but a family I know who has a son with cerebral palsy, the Saunders Family of Liberty Center, Ohio have a Drive-In Movie theatre on their property and I regretfully have not yet been but it is a definite goal of mine to go this year. Anyhow, they open this month and their web site is http://www.fieldofdreamsdrivein.com/ which you can visit for more info. and details. Please check it out. I think it is wonderful they are doing this and it is a great family activity which Team Hyndman plans to do this year. I miss the days of drive-in movies in the summer!
Below is part of the e-mail I received with more info. for GTCLL:
Hello everyone! I hope you had a great weekend! Here are some upcoming events for ball!
1. Don't worry if you were not able to attend open house last week! You still can register for ball with you coaches. If they haven't sent you a registration form yet, you should be receiving one soon!
2. Tuesday is Wendy's night. Same place same time! (5-8pm on Monroe St.)
3. April 23rd the Jaguars will be having a spaghetti dinner at the Maumee Senior Center! There will be dine in or take out! Food is being donated by Coach Carol Rambo and Churchill's (Billie Kwiatosi's friend). We will have the best sauce around! Compliments of Coach Carol's friend. So bring empty stomach and all your friends! We are going to see how many dishes Big Bubba Lanning can wash! Does anyone want to sponsor him for each dish he washes??? It will be alot of fun!!
4. Also in May the Jaguars will be have a McDonalds lunch fundraiser. That will be at the Perrysburg McDonalds on Dixie Highway! Time and date will be provided at a later time.
5. Field of Dreams Drive In will be opening up on March 26th. Coach Anileada ran into the owners of this place which is located on V602 County Rd 6, Liberty Center, Ohio. Phone is 419-966-2988. web address: www.fieldofdreamsdrivein.com Anyway, they said that they would admit one free adult with anyone specials needs child/adult. What a fun way to make some fun family and friends memories!!! (end of e-mail)
I'll be posting more soon!
Blessings:)
Amy
Saturday, March 13, 2010
March 13, 2010 updates (speaking, driving, etc.)
Hi all,
Today I am home by myself on a rainy Saturday nursing quite a headache. Greg, Nick, and Bella are in Bowling Green, Ohio for the youth Olympics as Nick and Coach Boggs are the guest speakers for both sessions. Isabella is competing in the afternoon. The Olympics is put on the the Wood County Prosecutors Office for 4th and 5th graders from all of Wood County, Ohio. For us, it started when Greg got a call a few weeks ago from the Wood County Prosecutor. Greg said, "why would the Prosecutor be calling me?!!! What did I do??? LOL!" Greg called him back and he spoke to Dave Hackenberg, the Toledo Blade reporter who wrote the story in January about Nick and his wrestling. Anyhow, then he asked if Nick and Coach Boggs would speak for the morning and afternoon sessions and of course, Nick said yes. I'm sure they'll all do great and Greg is video-taping Nick and Bella for me. So, I have a rainy afternoon to myself. After this, I may even take a nap, a definite luxury:)
Updates on Team Hyndman, let's see..........Bella and Nick got all A's and B's on their grade cards. Nick made the recognition roll at PHS. Isabella was student of the month in February for demonstrating responsibility and got a pizza lunch with the principal. We are so proud of them both. Nick is finally done with wrestling and we're looking into driving now.
Speaking of driving, Nick had an extensive OT evaluation at UT Medical Center last year which indicated he can drive without many modifications, just a ball on the steering wheel. His reactions times were great, everything. He's got his temps and has practiced with us and his Papa Jagel too. We kind of put it on hold during wrestling. SO, Greg called UT Medical Center as they have started a new driving school for individuals with physical disabilities. We definitely want Nick to do it there. It is $130 an HOUR for driving and then you have to sign up with a regular driving school and pay for the classroom instruction part as UT Medical Center only does the driving part. $130 an hour!!!!! (LUMP in the throat!) We contacted the Rehabilitation Services Commission/Bureau of Vocational Rehabilitation (RSC/BVR) for help. We had a meeting with a school liaison for transitioning Nick also. BVR is supposed to assign us a counselor by April and we'll take it from there and see if they can help us with the driving and college for Nick after high school. (he'll be a senior next year!) It's just going to take awhile but in the mean time, Nick is practicing driving more with Greg and his Papa. Nothing is ever a simple, easy process when you have a disability. There is always extra time, extra steps to take, more paperwork, meeting, and hoops to jump through. I get frustrated at times when other people don't understand this and take their healthy life/kids for granted. I know that sounds bitter. It's NOT at all. I'm just trying to share honestly how I feel at times (not all of the time!) as I have a feeling I'm not the only one who has these feelings from time to time. I of course don't wish this on anyone, I just get frustrated with others who don't understand it or take it for granted. It feels like a punch in the gut sometimes.
Greg, Nick, Bella, and I, Team Hyndman, are speaking on Monday for the staff (all of the staff) from the Sandusky County Board of DD for their staff in-service. We are excited and it should be a great experience for all of us. We hope to share some good information and perspective, and not put anyone to sleep:) LOL!
My work at Hospice is still going GREAT. I love it and it changes the entire way I view life. I don't even entertain the small and petty stuff lately. I think this is going to be the best job I've had so far in many ways. Also, I have just a few more weeks until my deadline to submit an article to Exceptional Parent Magazine so I need to get to writing this week and finish it up! Greg is still working hard and we are looking forward to the kids' spring break the week after Easter. Have some things planned but not a BIG trip, as we hope to take a big trip over Xmas break this year, we'll see........
Finally, I met the Aunt of a 25- year old East Toledo man last night named Ernie Berry (http://www.ernieberry.com/). Ernie is blind and a wheelchair user, has a service dog, is a professor at UT and works for city government, a Masters degree (and more) and just wrote a book titled, "Tried, Tested, and Being Approved". He has a website, which I listed above and he's on Facebook as well. You can buy the book at Amazon.com, Borders, and I think Barnes and Noble. I just ordered it and can't wait to read it and meet him sometime soon I hope. Nick plans to contact him as it sounds like (from talking to his Aunt) like they have similar personalities and sense of humor, etc. So, check it out:)
Blessings:)
Amy
PS- Here is a short description of Ernie's book from his website:
In this autobiography,Tried, Tested, and Being Approved, Ernie Berry speaks candidly of the physical, psychological, and emotional issues involved in living with and overcoming two acute debilitating handicaps. This book is intended to inspire, encourage, and edify readers in all situations by relaying the message that overwhelming success can be achieved when driven by goals and dreams that they cannot achieve through their own efforts. (www.ernieberry.com)
Today I am home by myself on a rainy Saturday nursing quite a headache. Greg, Nick, and Bella are in Bowling Green, Ohio for the youth Olympics as Nick and Coach Boggs are the guest speakers for both sessions. Isabella is competing in the afternoon. The Olympics is put on the the Wood County Prosecutors Office for 4th and 5th graders from all of Wood County, Ohio. For us, it started when Greg got a call a few weeks ago from the Wood County Prosecutor. Greg said, "why would the Prosecutor be calling me?!!! What did I do??? LOL!" Greg called him back and he spoke to Dave Hackenberg, the Toledo Blade reporter who wrote the story in January about Nick and his wrestling. Anyhow, then he asked if Nick and Coach Boggs would speak for the morning and afternoon sessions and of course, Nick said yes. I'm sure they'll all do great and Greg is video-taping Nick and Bella for me. So, I have a rainy afternoon to myself. After this, I may even take a nap, a definite luxury:)
Updates on Team Hyndman, let's see..........Bella and Nick got all A's and B's on their grade cards. Nick made the recognition roll at PHS. Isabella was student of the month in February for demonstrating responsibility and got a pizza lunch with the principal. We are so proud of them both. Nick is finally done with wrestling and we're looking into driving now.
Speaking of driving, Nick had an extensive OT evaluation at UT Medical Center last year which indicated he can drive without many modifications, just a ball on the steering wheel. His reactions times were great, everything. He's got his temps and has practiced with us and his Papa Jagel too. We kind of put it on hold during wrestling. SO, Greg called UT Medical Center as they have started a new driving school for individuals with physical disabilities. We definitely want Nick to do it there. It is $130 an HOUR for driving and then you have to sign up with a regular driving school and pay for the classroom instruction part as UT Medical Center only does the driving part. $130 an hour!!!!! (LUMP in the throat!) We contacted the Rehabilitation Services Commission/Bureau of Vocational Rehabilitation (RSC/BVR) for help. We had a meeting with a school liaison for transitioning Nick also. BVR is supposed to assign us a counselor by April and we'll take it from there and see if they can help us with the driving and college for Nick after high school. (he'll be a senior next year!) It's just going to take awhile but in the mean time, Nick is practicing driving more with Greg and his Papa. Nothing is ever a simple, easy process when you have a disability. There is always extra time, extra steps to take, more paperwork, meeting, and hoops to jump through. I get frustrated at times when other people don't understand this and take their healthy life/kids for granted. I know that sounds bitter. It's NOT at all. I'm just trying to share honestly how I feel at times (not all of the time!) as I have a feeling I'm not the only one who has these feelings from time to time. I of course don't wish this on anyone, I just get frustrated with others who don't understand it or take it for granted. It feels like a punch in the gut sometimes.
Greg, Nick, Bella, and I, Team Hyndman, are speaking on Monday for the staff (all of the staff) from the Sandusky County Board of DD for their staff in-service. We are excited and it should be a great experience for all of us. We hope to share some good information and perspective, and not put anyone to sleep:) LOL!
My work at Hospice is still going GREAT. I love it and it changes the entire way I view life. I don't even entertain the small and petty stuff lately. I think this is going to be the best job I've had so far in many ways. Also, I have just a few more weeks until my deadline to submit an article to Exceptional Parent Magazine so I need to get to writing this week and finish it up! Greg is still working hard and we are looking forward to the kids' spring break the week after Easter. Have some things planned but not a BIG trip, as we hope to take a big trip over Xmas break this year, we'll see........
Finally, I met the Aunt of a 25- year old East Toledo man last night named Ernie Berry (http://www.ernieberry.com/). Ernie is blind and a wheelchair user, has a service dog, is a professor at UT and works for city government, a Masters degree (and more) and just wrote a book titled, "Tried, Tested, and Being Approved". He has a website, which I listed above and he's on Facebook as well. You can buy the book at Amazon.com, Borders, and I think Barnes and Noble. I just ordered it and can't wait to read it and meet him sometime soon I hope. Nick plans to contact him as it sounds like (from talking to his Aunt) like they have similar personalities and sense of humor, etc. So, check it out:)
Blessings:)
Amy
PS- Here is a short description of Ernie's book from his website:
In this autobiography,Tried, Tested, and Being Approved, Ernie Berry speaks candidly of the physical, psychological, and emotional issues involved in living with and overcoming two acute debilitating handicaps. This book is intended to inspire, encourage, and edify readers in all situations by relaying the message that overwhelming success can be achieved when driven by goals and dreams that they cannot achieve through their own efforts. (www.ernieberry.com)
Saturday, March 6, 2010
Pain and Growth Spurts
Hi all,
I am posting below a reader's e-mail to me about her young son with CP's pain during a growth spurt. For anyone that doesn't know, a growth spurt for an individual with CP is not a good thing! When you have CP, brain damage that causes problems with muscle tone and coordination, your muscles do not have "muscle memory" and the person with CP will experience regression usually of their functioning and have to have physical therapy to "catch up" again after they growth spurt ends. For Nick, he would fall more, be less coordinated, have more trouble moving, walking with his walker, anything physical, be in more pain, have muscle spasms, etc. It is a tough thing to deal with EVERY time they grow! Anyhow, I e-mailed this reader to give her some suggestions from our experience with Nick, but if anyone else has anything to suggest to this mother, please post it and I can make sure to share it with her if she doesn't catch it on the blog. Thanks!
Blessings:)
Amy
PS-I'm sure there is a more accurate "medical/technical" explanation for this but I am just describing it from our experience with Nick and what we were told by his doctors and physical therapist in terms we could understand it!
Here is the e-mail:
Danielle,
Oh, I was reading your e-mail and just feeling what you are going through. It took me right there. I know EXACTLY what you are talking about, we went through it many times, MANY. I know it's tough and I'm sorry to hear Braden is going through that.
I'm going to be honest, there isn't one perfect answer. BUT, there were times we just had to take Nick's casts off (we used the casts to immobilize him, Nick has low tone, so it's a little different, but it's the same in a lot of ways too) when it go too bad. It was harder when Nick was in school, especially Jr. high and high school because if he missed school from not sleeping and being in pain, and he missed a lot, it made it tough on him to keep up and we had to deal with the school and get the doctor to write notes, etc. We did use Motrin, and warm baths before bed, heating pads, and sometimes Motrin PM, but ultimately, Nick had to take pain meds (Valium) which Dr. Munk prescribed or his pediatrician (or I'm sure Dr. Miller could) for bedtime. We just had to when it was really bad to get through the growth spurt and pain, or he wouldn't sleep well, miss school, etc. Even with the Valium, I'm sorry to say, at times it was still bad and he still missed a lot of school. I KNOW the worst thing as a parent is to see your child in pain. I know it and I'm so sorry, I wish I could give you a "magic" answer. Most people who don't go through this personally or with their kids don't understand. (Nick has SEVERE GI reflux too, vomits most mornings, and this is an issue with sleep and school too for us) The best thing I can tell you is we have learned to do what we have to do to get through the growth spurt and to manage the pain. It's always about weighing which option is worse, and neither option is great, but what will get you through it and be able to function best. I am not saying we did the "right" thing with the pain meds, baths, etc., but we did what managed Nick's pain best because the pain he experiences is what impacts him the most in the most areas of his life. He still has a lot of pain from growth (jr. high and high school is the biggest growth time) but also from nerve damage from surgery he had and just from working so hard physically. I think pain is always something he'll need to manage. Nick feels warm water works best for him, soaking in a hot tub or jacuzzi (we don't have one but my parents do!) and when he did water therapy, that really helped.
Danielle, I hope this helps a little. I know it isn't the most positive answer but I wanted to be honest and tell you too, that it all does work out. For us anyhow, missing a night or two when it was REALLY BAD without the immobilizers was worth a good night sleep and less pain, and we never found a "perfect" balance, but you can't beat yourself up about that. You have to get through each day and do the best for that day. That's just what we've found works for us. We still question what we should do at times, but we're more comfortable when Nick is more comfortable and Nick has his own strong opinions about the pain, which has helped us see how much that negatively affected him and how important his quality of life is. It's a tough balance at times but it will be OK, really, however it turns out.
We'll keep you all in our thoughts and prayers and I will post this (you said you didn't mind, if that changes, just let me know!) and if anyone else then has any suggestions for you, I'll let you know too:)
Take Care and please let me know how things turn out.
Amy
Amy L. Hyndman
10312 Scarlet Oak Dr.
Perrysburg, Ohio 43551
419-872-7522
amyhyndman@buckeye-express.com
"It's all for the Journey"
--- sndgandee@aol.com wrote:
From: sndgandee@aol.com
To: amyhyndman@buckeye-express.com
Subject: quick question about night time muscle discomfort
Date: Thu, 04 Mar 2010 14:57:10 -0500
Hi Amy! How are things?
Braden is going through a growth spurt right now and having a hard time sleeping because he is in so much discomfort and pain due to the tightness. I have him sleeping all night in his knee immobilizers and don't want to give that up because in the long run it'll make things worse. But right now it's bad. It's been about ten days and he tenses up his whole body and whimpers all night. He wakes often crying a lot. I talked to Ann about it and she recommended Motrin before bed and moist heat. She said you guys went through similar things and maybe you would have some ideas...? I know we can call Dr Miller and have him put on either a pain med or something to reduce the tone but I really don't want to start that at such a young age unless we have to.
Please let me know anything that has worked for you guys so we can give it a shot.
Thanks,
Danielle
sndgandee@aol.com
I am posting below a reader's e-mail to me about her young son with CP's pain during a growth spurt. For anyone that doesn't know, a growth spurt for an individual with CP is not a good thing! When you have CP, brain damage that causes problems with muscle tone and coordination, your muscles do not have "muscle memory" and the person with CP will experience regression usually of their functioning and have to have physical therapy to "catch up" again after they growth spurt ends. For Nick, he would fall more, be less coordinated, have more trouble moving, walking with his walker, anything physical, be in more pain, have muscle spasms, etc. It is a tough thing to deal with EVERY time they grow! Anyhow, I e-mailed this reader to give her some suggestions from our experience with Nick, but if anyone else has anything to suggest to this mother, please post it and I can make sure to share it with her if she doesn't catch it on the blog. Thanks!
Blessings:)
Amy
PS-I'm sure there is a more accurate "medical/technical" explanation for this but I am just describing it from our experience with Nick and what we were told by his doctors and physical therapist in terms we could understand it!
Here is the e-mail:
Danielle,
Oh, I was reading your e-mail and just feeling what you are going through. It took me right there. I know EXACTLY what you are talking about, we went through it many times, MANY. I know it's tough and I'm sorry to hear Braden is going through that.
I'm going to be honest, there isn't one perfect answer. BUT, there were times we just had to take Nick's casts off (we used the casts to immobilize him, Nick has low tone, so it's a little different, but it's the same in a lot of ways too) when it go too bad. It was harder when Nick was in school, especially Jr. high and high school because if he missed school from not sleeping and being in pain, and he missed a lot, it made it tough on him to keep up and we had to deal with the school and get the doctor to write notes, etc. We did use Motrin, and warm baths before bed, heating pads, and sometimes Motrin PM, but ultimately, Nick had to take pain meds (Valium) which Dr. Munk prescribed or his pediatrician (or I'm sure Dr. Miller could) for bedtime. We just had to when it was really bad to get through the growth spurt and pain, or he wouldn't sleep well, miss school, etc. Even with the Valium, I'm sorry to say, at times it was still bad and he still missed a lot of school. I KNOW the worst thing as a parent is to see your child in pain. I know it and I'm so sorry, I wish I could give you a "magic" answer. Most people who don't go through this personally or with their kids don't understand. (Nick has SEVERE GI reflux too, vomits most mornings, and this is an issue with sleep and school too for us) The best thing I can tell you is we have learned to do what we have to do to get through the growth spurt and to manage the pain. It's always about weighing which option is worse, and neither option is great, but what will get you through it and be able to function best. I am not saying we did the "right" thing with the pain meds, baths, etc., but we did what managed Nick's pain best because the pain he experiences is what impacts him the most in the most areas of his life. He still has a lot of pain from growth (jr. high and high school is the biggest growth time) but also from nerve damage from surgery he had and just from working so hard physically. I think pain is always something he'll need to manage. Nick feels warm water works best for him, soaking in a hot tub or jacuzzi (we don't have one but my parents do!) and when he did water therapy, that really helped.
Danielle, I hope this helps a little. I know it isn't the most positive answer but I wanted to be honest and tell you too, that it all does work out. For us anyhow, missing a night or two when it was REALLY BAD without the immobilizers was worth a good night sleep and less pain, and we never found a "perfect" balance, but you can't beat yourself up about that. You have to get through each day and do the best for that day. That's just what we've found works for us. We still question what we should do at times, but we're more comfortable when Nick is more comfortable and Nick has his own strong opinions about the pain, which has helped us see how much that negatively affected him and how important his quality of life is. It's a tough balance at times but it will be OK, really, however it turns out.
We'll keep you all in our thoughts and prayers and I will post this (you said you didn't mind, if that changes, just let me know!) and if anyone else then has any suggestions for you, I'll let you know too:)
Take Care and please let me know how things turn out.
Amy
Amy L. Hyndman
10312 Scarlet Oak Dr.
Perrysburg, Ohio 43551
419-872-7522
amyhyndman@buckeye-express.com
"It's all for the Journey"
--- sndgandee@aol.com wrote:
From: sndgandee@aol.com
To: amyhyndman@buckeye-express.com
Subject: quick question about night time muscle discomfort
Date: Thu, 04 Mar 2010 14:57:10 -0500
Hi Amy! How are things?
Braden is going through a growth spurt right now and having a hard time sleeping because he is in so much discomfort and pain due to the tightness. I have him sleeping all night in his knee immobilizers and don't want to give that up because in the long run it'll make things worse. But right now it's bad. It's been about ten days and he tenses up his whole body and whimpers all night. He wakes often crying a lot. I talked to Ann about it and she recommended Motrin before bed and moist heat. She said you guys went through similar things and maybe you would have some ideas...? I know we can call Dr Miller and have him put on either a pain med or something to reduce the tone but I really don't want to start that at such a young age unless we have to.
Please let me know anything that has worked for you guys so we can give it a shot.
Thanks,
Danielle
sndgandee@aol.com
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