9 replies to this topic

[luckymom]

Hi, I am the mother of two great kids. One a 14 year old boy who of course knows everything and the other a 6 year old boy who is paraplegic or tetraplegic depending on which doctor we're talking to. Matt has had SCI since he was 5 months old. He was diagnosed with neuroblastoma, a tumor which compressed his spine from about C6 to T4. He has no feeling from the chest down. He is not on a respirator but has other breathing issues. Matt also has central apnea, siezur disorder, breath holding with asysotle,central nervous system disorder, autonomic dysreflexia and clonis. Sounds like a lot when you write it down, but he is a very active happy boy. I am always wondering about his future and what I can do to make it better. I am hoping that some of you may have some answers for me. Matt gets physical therapy but are there any sites that could help me to learn range of motion? I am his primary caregiver and can't go to classes. Any advice or encourage ment is wellcome. Thank you and bless you

Edited by luckymom, 15 June 2007 - 03:17 AM.

[anglesmom]

[quote name='luckymom' date='Jun 8 2007, 06:01 PM' post='34463']
Hi, I am the mother of two great kids. One a 14 year old boy who of course knows everything and the other a 6 year old boy who is paraplegic or tetraplegic depending on which doctor we're talking to. Matt has had SCI since he was 5 months old. He was diagnosed with neuroblastoma, a tumor which compressed his spine from about C6 to T4. He has no feeling from the chest down. He is not on a respirator but has other breathing issues. Matt also has central apnea, siezur disorder, breath holding with asysotle,central nervous system disorder, autonomic dysreflexia and clonis. Sounds like a lot when you write it down, but he is a very active happy boy. I am always wondering about his future and what I can do to make it better. I am hoping that some of you may have some answers for me. Matt gets physical therapy but are there any sites that could help me to learn range of motion? I am his primary caregiver and can't go to classes. Any advice or encourage ment is wellcome. Thank you and bless you
[/quot





Hi luckymom, I too am a lucky mom
My daughter (who is now 10) was backed over @ 1-1/2 yrs old resulting in a sci. We have been very lucky to have been introduced to Shriners Hospital for children not long after her accident. They have been a godsend for us all. The hospital that she belongs to specialize in SCI. It has been very scarey and draining all these years, but I would do anything for her. If I can help I will.

Sincerly Angelsmom

[quote name='luckymom' date='Jun 8 2007, 06:01 PM' post='34463']
Hi, I am the mother of two great kids. One a 14 year old boy who of course knows everything and the other a 6 year old boy who is paraplegic or tetraplegic depending on which doctor we're talking to. Matt has had SCI since he was 5 months old. He was diagnosed with neuroblastoma, a tumor which compressed his spine from about C6 to T4. He has no feeling from the chest down. He is not on a respirator but has other breathing issues. Matt also has central apnea, siezur disorder, breath holding with asysotle,central nervous system disorder, autonomic dysreflexia and clonis. Sounds like a lot when you write it down, but he is a very active happy boy. I am always wondering about his future and what I can do to make it better. I am hoping that some of you may have some answers for me. Matt gets physical therapy but are there any sites that could help me to learn range of motion? I am his primary caregiver and can't go to classes. Any advice or encourage ment is wellcome. Thank you and bless you
[/quot





Hi luckymom, I too am a lucky mom
My daughter (who is now 10) was backed over @ 1-1/2 yrs old resulting in a sci. We have been very lucky to have been introduced to Shriners Hospital for children not long after her accident. They have been a godsend for us all. The hospital that she belongs to specialize in SCI. It has been very scarey and draining all these years, but I would do anything for her. If I can help I will.

Sincerly Angelsmom

[Lee]

Hi luckymom and anglesmom. Different perspective here. I was diagnosed with an internal spinal tumour at the age of 8years. I was left seeing shrinks for 3 1/2 years because they thought my pains were physcological as my parents were getting divorced. Anyway, the Ependymoma grew 3" into my skull and down to the bottom of my shoulder blades. I was give a 30% chance of coming out of theater alive and if i did then i would be paralysed. They couldnt remove the tumour as was too entangled in the spinal cord. Anyway, cut a very long story short i have had lots ot treatment, drugs (prescribed ones, lol) neck fusion, spinal fusion and my mother has been told i am dying at least 3 times. Life span of someone we were told with an ependymoma isnt very long maybe into there 20's but im now 31, with a 3 1/2 year old son, (they said with the radiotherepy i was prob 100% infertile) im married and very happy. Yeah i have problems but just keep ya chin up as docts tend to paint the bad side and everyones different. Most important thing i found when i was ill and young was not wanting to feel different. Makes a huge difference. I also have very little feeling and patchyness from my neck down, very bad clonis etc. makes us all very special, lol. If you ever want to talk feel free to ask me any questions or your welcome to pm me if you feel its personal.

cheers lee

Edited by Lee, 21 June 2007 - 07:42 PM.

[luckymom]

Nice to meet you angelsmom and Lee. We have been very lucky with Matt he was not expected to make it to 6 months, so 6 years is amazing. Sounds like you have also proven the Doctors wrong. Don't get me wrong at Children's we have had some amazing Doc's its just that sometimes they treat whats wrong at the moment and don't prepare you for what can come. I think for most SCI patients these questions are answered in rehab, but being 5 months old and having breath holding to the point of stoping his heart ( now has a pacemaker) rehab wasn't an option. We are currently battling Scoliosis. We go in July for Matt's 2nd extension of his growing rods. The Dr. says his screws are backing out at the top so they might have to put in hooks! Any experience with these?

anyway, Thanks for the response and you will probably be hearing from me soon!
keep smiling Terry

[ParaforGod]

Hi Lucky Mom,
You ask is there any where that you could take your son to learn range of motion. I saw that you are from GA. I don't know how close you are to Shephard Center in Atlanta, GA. but it is a great place. I have found the doctors to be great. I don't live there so I don't go as often as I did. When I was there for my rehab there was children there. When I was there they made my daughter learn range of motion with me in case something happened and I couldn't do for myself. She had to stay with me one weekend while I was there and do everything for me that I would have to do so if something happened she would know what to do. They own apartments and the last 3wks. I was there my daughter and myself had to stay in one of the apartments to get use to being on our own. So you may want to get in touch with the center and see if they can help. I wish you the best.

[penny4themnow]

My apology! This is my first posting here! I'm the wife of a C4/C5 complete (vented) . I have had a lot of information to digest these past 11 weeks since my hubby's accident. With two young kids that also need my attention...I don't know whether I am coming..or going....sad...happy....strong...emotional. I just feel so helpless...and it's breaking my heart! The way that I try and deal with it is by off-loading on a web site set up by my husbands rugby mates. I think writing things down helps one put a perspective on things. It's basically one hell of a roller coaster ride....but the darkest of days don't feel so dark when you look back.

Does anyone have any advice...in whatever shape or form for me?

Much appreciated.

[Katied]

penny4themnow, on Jul 9 2007, 04:02 PM, said:

My apology! This is my first posting here! I'm the wife of a C4/C5 complete (vented) . I have had a lot of information to digest these past 11 weeks since my hubby's accident. With two young kids that also need my attention...I don't know whether I am coming..or going....sad...happy....strong...emotional. I just feel so helpless...and it's breaking my heart! The way that I try and deal with it is by off-loading on a web site set up by my husbands rugby mates. I think writing things down helps one put a perspective on things. It's basically one hell of a roller coaster ride....but the darkest of days don't feel so dark when you look back.

Does anyone have any advice...in whatever shape or form for me?

Much appreciated.

Hi I'm Katie and my husband is quad c4,c5,c6,c7 was on a vent but thank God he was able to get off it. I know what you feel and you are still so new at this that I'm suprised you can even sit now and think straight enough to write. I still have all of the feelings you have but after a what seemed like a a very long time it does get easier. Life will never be as it was but you can make it work. Remember just take baby steps. The chat groups help alot to let you know you are not alone. Also they give alot of info. we all need at one time or another.
God bless you and your family,
Katie.

[GullaBelle]

Hello everyone. i am new to the site - just stumbled upon it. I am in my third year caring for a Fiance who was paralyzed T12 injury. I was never referred to anyone for help in understanding, learning to care for him, psycologic counceling for me or him or our kids....

Well it is just nice to finally find somepersons to talk to, ask questions, compare solutions...

Sometimes - well honestly most times I am still confused and sometimes angry over the injury, not selfish for myself - but for all of us - him, me, kids, and friends of ours.

The physical aspects are easy, the modifications to lifestlye are easy, but the emotional rollercoaster is still happening....is it supposed to be leveled out by now?

Anyways its great to finally find somewhere i can be understood - thanks to the site administrators and those of you whom are here to converse and share!

Thank you

Gulla Belle

[nomis]

GullaBelle, on Jul 14 2007, 09:04 PM, said:

The physical aspects are easy, the modifications to lifestlye are easy, but the emotional rollercoaster is still happening....is it supposed to be leveled out by now?

The emotional ride. Does anyone ever understand or know where it's headed? Maybe you've got some specific issues you could single out.

[luckymom]

Hi to the other newbies. Sorry I haven't responded lately, we have had another surgery and a lot of family crisis going on. About the emotional stuff. That will get better, and then resurface. At least with me. Matt was so young, and his injury was caused by a tumor. No drunk driver or any one else to get angry at, except myself. After 6 years I still have moments of guilt or self anger but I also know that I couldn't have changed or known what was happening to my son. I think with an accident some of the emotions are different but not the overwhelming fear of what is to come next. It does get better and this site helps more than anyone knows. sometimes I log on with the thought of venting and then read some posts and realize I have nothing to vent. Its all there in black and white! I am not alone!