Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

4 Year Old Grandaughter with New Injury

June55Baby
0 Recommendations

Hey all. My 4 year old grandaughter was in a car accident on March 25th along with her mama (our daughter) and sustained a complete T6 SCI-WORA with no movement or sensation below her belly button. Our daughter sustained massive lower extremity injuries (fractures of all bones in both legs and knee joints messed up) and requires full care by her husband. Therefore my husband and I have been caring for our grandaughter since the day of the accident. (By the way, they were hit head-on by a drunk driver at 8 in the morning on the way from taking the 2 big sisters to school <G-r-r-r-r-r-r>).
She spent 3+ weeks at a local children's rehab center and then 3 weeks at Shriners Hospital in Philadelphia, PA. Although we are very pleased with her care at both facilities, we have been given very little encouragement for any recovery and needless to say, we are devastated.
Her care is overwhelming what with the bladder program (intermittent caths), bowel program, rehab, home exercises, braces (AFOs & TLSO) and starting this week, nerve stimulation. Any tips on how best to manage all her care and still have a life for her and the family? Any hope for the future? Any ideas and encouragement will be greatly appreciated.

Explore topics in this discussion:

Surgery Pain Spinal cord injuries Fractures Paralysis Stress

13 replies

FuschiaFan

She should be planning for school in the fall, so it is time now to meet with the school authorities and get her IEP completed. It is common for the IEP to include therapy as well as nursing assistance while she is at school. As soon as possible she needs to learn to do her own caths, ideally before starting school.

No one knows if she will get any return...it is too soon to tell, but that does not mean you cannot get back to some semblence of a normal family life over time. Get a schedule. Get some help (was there a suit and has there been any settlement offers or are you working with an attorney to go after the drunk driver???). Is she eligible for any state services for disabled children? Some states have pre-school programs that can start soon, and can also be part of her IEP.

It is also important that she spend some time with her parents right now. Is that possible?

bucklestwins

Hello,

I'm sorry to hear your story. It's devastating and can often leave you feeling helpless. Our daughter, Erin, is also 4 years old and has a T3-T7 incomplete SCI. Initially the doctors said she would never recover any function below the level of her injury, but after finding the International Center for Spinal Cord Injury at the Kennedy Krieger Institute, Erin is proving them wrong! They have an amazing pediatric program! Their OT's and PT's are some of the best in the world. We have met so many wonderful people up there, and some with complete spinal cord injuries who have recovered sensation and function. Please don't give up hope, because that is one thing you do have on your side. I completely agree with FuschiaFan about getting together with your school district as soon as possible to get the IEP in place and start planning for school. We are going to start working with Erin on self-cathing, and her OT and PT in preschool this year are working on skills that will allow her to be more independent while at school.

I would love to talk to you more about the many possibilities for your granddaughter. If you would like, please contact us at bucklestwins@aol.com and you can see Erin's full story at www.freewebs.com/bucklesfamily.

Good luck with everything. We wish you all the best!
Melissa

frenchluxe

Hello,

I was very sad to read your story. I understand the shock and pain that you are experiencing. My boyfriend had an accident a year and a half ago and is a C5/6. In the beginning you are in disbelief and can't imagine ever being happy again. But indeed, time heals all wounds and soon your daughter, grand-daughter and family will have their routine and have a life again. I would never give up hope, no matter what the doctors say...they never thought my boyfriend would do as well as he is doing, and never thought he would regain certain arm movements, strength, and do many things on his own as he is doing. Of course, it took a lot of hard work on his end also. Every injury is different and no two people are the same. May God bless you, your loved ones, and family, and give you the strength and faith that you need at this time.

Love, Melissa

audreys

Hello! I am sorry about your granddaughter. I have some idea of what you are feeling because my seven year old son suddenly became a C6/7 quad due to a spinal cord tumor. In the months that followed, my husband and I didn't think that things would ever be "normal" again. We started out with Lucas trached and on a ventilator, unable to move except for his head, both shoulders,and one elbow. Three years later, he is a bright, social fourth grader who happens to use a chair to get around, and needs some help in school to do things. He breathes on his own, has more upper body mobilty,writes and draws with a special cuff, and does the same schoolwork that the other children do. When anyone mentions that we have to do so much for him, we are startled. LIfe has become normal. I would like to reiterate Melissa's suggestion to get your granddaughter to Kennedy Kreiger in Baltimore. In fact, I would make it a prioity to her treatment. They will evaluate her, then prescribe a program that has helped many children improve. Perhaps you can check them out on the web. Other than that suggestion, I would follow the recommendations that Shriner's gave you. They practically saved Lucas life by stearing us in the right direction when we had been given wrong advice by medical personal at the original rehab. As far as giving you some relief, try to involve other people in her care. At four she is probably still easy to pick up, so teach everyone who volunteers how to cath her. That is the biggest problem for leaving her when you go out. Are there Aunts and Uncles, family friends, church friends, etc. that you can teach to take care of her for a few hours? Have the person do it several times when you are there, then write down the instructions for them to reference when you are not there. Even our other son who was fifteen at the time wanted to learn to cath him and does it quite successfully. This will be very important to you and your husband, because you are going to need to just get away for a few hours. The other thing that my husband and I found helped, was that we took turns caring for L. Since he needs to be cathed during the night and we both have to work the next day, we take turns getting up. We found that L. called us many times during the night for a drink, So I got him a "Camel" which is a kind of backpack water pouch that bicycle riders use. You can find it in most sporting goods stores. Now he gets his drink himself. We also learned to do his bowel training when he goes to bed. He usually is asleep for most of it. Again, take turns. My husband usually takes care of L. in the morning because I have to leave for work earlier than he. I usually take care of his bedtime routine. We also have become quite a team at backing each other up with cathing, fluid intake, etc. I hope that these suggestions have helped you. Please feel free to contact me if you would like to just talk, or ask other questions. Just reply in the "Friend" part. Finally, there is much hope.. Between the things that they are doing at Kennedy Kreiger (and some other places around tthe country) and the tremndous growth of SCI research for a cure, our children will walk one day. I like the Shriner's motto best. They say "Keep your child well until the cure comes." I would add to that, do everything you can to make that happen, but remember, she is still the little girl she was before the accident. How many things can you figure out for her to do?

wendy0523

my son was in a car accident almost 2 years ago and was a C6 quadriplegic and his Dr's said he never walk again and if he did it would only be 5%chance, well today he is walking with a walker,has all the feeling back,his left side is still alittle weak but is getting stronger.My son beat all the odds that the dr's ever gave him, so dont give up there is still hope for your granddaughter, it may just take a little while for her to heal yet but she's young and the body is always repairing itself.Keep the faith. If you need to talk to anyone about anything dont hesitate to write because I took care of my son all by myself and brought him this far and I have to say it wasnt easy but it was worth it.

June55Baby

Oh, my! Thanks to all of you who responded to my post. I am interested in learning more about the Kennedy Krieger Institute. We are willing to do whatever for our girl.

Thank you too, for your advise. She will be starting a private, church-based pre-school this fall and her school is wheelchair accessible. The education therapist at the local children's hospital is working with the school to get her IEP completed.

Also, since we came back from Shriners', we have moved into our daughter's home, so the family is all together and her daddy is taking on more of her care as her mama recovers and can do more for herself.

Our grandaughter still enjoys arts and crafts, games, playing outside with her new kittens, and doing most everything she did before the accident, except ballet. Her older sisters have accepted her injury and her wheelchair and play well with her.

We are so grateful that our daughter and grandaughter are alive and recovering and neither had more severe injuries.

Thanks to all of you for your encouraging words!

tiffanyseal

Hey...I'm so sorry to hear about your granddaughter...I can relate to how you feel..My daughter had open-heart surgery at 2 months old...We were told this was a routine surgery and everything would be fine. However, when she came out of surgery she was a T-11 paraplegic. We were not told this could happen.. The doctors gave Reece a ZERO % chance of crawling let along walking...Its been almost 3 years now and she IS crawling and walking with the help of her RGO's. The key is to make a schedule. Don't try to fit everything in one day..Like on Mondays, Tuesdays and Fridays you may go to rehab..then on Wednesdays and Saturdays do the home exercise..and then give her a break on sundays {except for stretching...you want to do this everyday} Also, with the muscle stimulation do a different area everyday...like do her gluts,quads, and gastroc-soleus complex one day and then do hamstrings and quads the next..This is what has helped us the most..to make sure she is getting what she needs but not feeling like everything has to do done in one day...that will drive you crazy...It will be super hard at first but you will get the hang of it.. Plus, don't ever let a doctor tell you what she can't do...there is a reason they call it "practicing" medicine b/c that is what they are doing "PRACTICING"... Best of luck to your family..Tiffany

June55Baby

tiffanyseal,
Thank you for your encouragement and advise. We realize it is a daunting task to fit in all of Grace's care and care for the 2 older girls and do anything else like housework, cooking, etc.

We are trying to get into a schedule. Right now she does OP Rehab Tuesdays and Thursdays; Nerve Stim Monday, Wednesday, and Friday; stretches and ROM exercises everyday; and practises her Rehab exercises daily (transferring, rolling, sitting up, etc, etc).

What are the RGOs you referred to? Grace will be going back to Shriners in a few weeks to get gait training in braces that go from her hips to her feet. We were told she will be upright using her upper body to sorta "swing" her lower body to ambulate using a walker. What I understand is this is more to help her bones grow properly and keep her muscles toned rather than to be a way for her to walk.

Thank you again! All ideas and suggestions are appreciated.

tiffanyseal

hello again,
the gait training braces actually will go to the very top of her thighs and are called KAFO's. She can use these in the gait trainer { which is a special type of walker }. I'm not sure why they would have told you it was more for bone and muscle and not actually walking. Yes it will help to keep her muscles strong and to keep them from getting tight..and yes she can develop hip tightness { which could deform the bones} if she doesn't have some kinda of weight baring..but also these will be a way for her to relearn how to walk. And she could use them outside the home. In the beginning, she will probably not be able to use them much { 5 maybe 10 minutes a day...if that much } she will have to build up slowly...don't think she will jump in them and take off..we made that mistake..she will have to learn how to use thing which could take some time but once she can do it for 45 minutes to an hour then yes she can go out in them.
The RGO's however Reece uses with a regular walker. They are like AFO's but solid in the front and open in the back { reverse AFO } ..then they have a metal piece that runs up the outer part of her leg that connects to a back piece { now the back piece at first goes pretty much all the way up the back and has strapes to keep her standing straight...but as time goes on and she becomes stronger the back piece is cut down..the goal is cut down until she is walking with little support }...And yes with both KAFO's and RGO's you use your upper body strength to move your legs...The stronger her upper body then the stronger her lower will be...Now, she will probably use the KAFO's first and then build up to the RGO's { they are heavier and it helps if she has strong "hip flexion" to use them..can she move her hips any? } it may be to early, shes probably still trying to heal..But do ask your PT about them...And like Bucklestwins we also take Reece to Kennedy Krieger which they were the ones who recommended the RGO's for Reece..Keep in mind this WILL be a slow process and your granddaughter will probably fight you on doing PT sometimes...{ GOD knows Reece has before } but you just have to keep pushing her..the end result will be worth it...As I said before the doctors Reece had gave her NO chance of walking...but her PT's and her doctors now refer to her as a " walking paraplegic" ..Never give up hope..and don't think miracles only happen to "other" people..because to someone else you are that "other" person.
http://www.centerfororthoticsdesign.com/isocentric_rgo/index.html
this is a website about the RGO's if you want to check them out....
wishing your family the very best
Tiffany

June55Baby

Thanks again tiffanyseal. Grace has great balance and did from the first week after the accident. I think her upper body is quite strong, especially her abdominal muscles. I say that because she can sit flat on the floor with her legs out in front and lay over her legs and then sit straight up again with out using her arms. I'm not sure about the hip flexion, but I don't think she has much voluntary hip flexion.

Right now she has AFOs and a TLSO brace she wears most all the time... she HATES the TLSO, but is adjusting. It is just SO HOT and HUMID where we live in Mississippi and she sweats a bucket everyday.

When they tried the braces for "walking" at Shriners, they had to rig up AFOs and knee braces and hold her hips locked. Apparently not all kids can use this therapy and they wanted to be sure Grace could use it before they went to the expense to build the braces for her. Twice, she took 4 "hops" from her chair and 4 "hops" back and you could see when it "hit her" what to do. The PT was SO EXCITED she cried, "She's got it". We are grateful for all they have done at Shriners, but we are VERY interested in KKI as well.

A nerve stim bicycle has been ordered for her (thanks to a successful fund raising event) and we are excited about what we hear about it. The representative from the bicycle company told our daugther that they needed to wait a year or so before taking Grace to KKI so Grace would be stronger??!!?? Grace is not at all weak and other than the SCI had no injuries from the accident. It seems to me the sooner you get started, the better. Don't let the body "forget" what it is supposed to do. Right?

One concern I have is that she has been diagnosed with a "complete" SCI and I know that makes a big difference in her recovery. BUT I am praying for and expecting a miracle for my grandaughter!

Thanks again to you and to bucklestwins for your posts and encouragement... We are not alone.

Thank you and God bless you!

horsestail

I am sorry to hear about your granddaughter & daughter. It does sound like your granddaughter is a fighter, so hopefully she will be the odds like some others who are fighters. Meeting with others who have SCI can be very helpful. This site can help you see if you have a SCI peer support group in your area. http://www.spinalcord.org/. I learned about HASCI and community long term care as well as other helpful things. The long term care does not mean nursing home, but is outside help that comes to the home, which all families could use some relief help. The Miami project is making some advancements from what I heard at my SCI meeting last night, so maybe there is will be something for your granddaughter in the near future. The Miami project is connected to the football player who was recently injuried and told he would never walk again, but he is. I wish you and your family the best. They are lucky to have such loving grandparents to help them through these trying times. take care

writerlass

I, too, am sorry to hear about your daughter and granddaughter's injuries. It sounds as though you've been gvien a lot of very good advice, most especially, NEVER GIVE UP!

You may also want to contact the Paralysis Resource Center as they have new injury information that they can give you, including information on pediatric spinal cord injury.

Having additional information can help with your questions and concerns, and will make for a less-stressful time in your lives when stress seems to be everywhere.

I hope this is helpful!

Good luck to you, your daughter, granddaughter, and your family!

pdecrease

Your post is very old, but I still think of your grandauther, how is she doing?

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You