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Thread: Heart Broken Daughter Recent T12

  1. #21
    I'm in the same boat. We had our first 4 hour pass yesterday and we get our day pass tomorrow. We are all very nervous, his bed hasn't arrived, he won't have xtra meds, etc... and he gets so stinkin' hot in his armor (TLSO), and the longest he's been in it is 4 hours. May I ask how you dealt with that or was it an issue?

    I personally had done (and continue to do) an extensive amount of research on SCI prior to them actually telling us what his level/status was/is, yet I still wasn't prepared. It hurts, and it hurts like hell.
    You have to remember, we are still early in the game, our babies' injuries are only a few weeks old. Today, my son was evaluated for his release Tuesday, his injury was at t12, but at admission to rehab, they said he was t11, now he's at or slightly below t12.
    I know you aren't a spiritual person, but you should always have hope, especially for her. She will get her strength through you. And.. when you get the facts, you can then begin to research the best possible treatment for her recovery.
    LOL,

  2. #22
    Moderator jody's Avatar
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    many prayers to you. very hard to read.

  3. #23
    Jody, sorry that this is hard to read. I just feel this is a place I can release some of my tension.

    Akeleshian, the armor (brace) hasn't been a big issue. It does bother her from time to time and earlier she couldn't wear it too long. I think it was more because of balance. They did have to cut it down when she got to rehab because it was too large for her and that seemed to help some. She has complained and has stated that she has to get this thing off. She never mentioned anything about getting too hot in it. The rehab place is pretty cold most the time and she will complain about that.

    Today was such a great day. Funny she wanted to get back to rehab to socialize with the friends she has made. So much easier to say goodbye to her when she is happy. She talks to everyone. Okay I have to tell you more about sweet Jessica.

    We first met Jessica when she was 11 months. We picked her up from an orphanage in Russia. Her arms were reached out to us with a huge smile on her face as to say "I've been waiting for you". We found very quickly that she was a lot to manage. We also adopted her now sister on the same trip. Personalities are so different, but we love them both the same. They are 7 months apart. Jessica was, is so active. Even though she was malnourished when we brought her home she would speed crawl. She would crawl to each toy, grab it then put it down and grab another and another. She just couldn't get them fast enough. She started running soon after crawling and started with her temper tantrums. She was so determined to get her way. We learned to give her some alone time and she would work out the tantrum on her own and go back to her sweet personality. If we didn't leave her alone with her tantrums they would end up escalating. We also had a tough time getting her to bed at night. Put her to bed and then race to see if we could beat her to the door. We would finally give in and she would sleep in the hallway. I figured it was her active personality that wouldn't allow her to stay in one place long enough to fall asleep. She still has a hard time winding down. In school she had a hard time sitting still and would end up at the office. The office got to know her well. They would call us that Jess is at the office again, but would later state that with her ambition and determination she will do great things in the future. She has done much better with her behavior and tantrums now that she is older and is so sweet, active and happy. She loves doing cartwheels around the house and is always dancing to her preteen music.

    When the accident happened she was really caught up and excited because a helicopter was in the area trying to find a child who was lost. The cops came and talked to her and her friends asking if they had seen this boy. She heard the helicopter again with the loud speaker while she was upstairs. She stood on her bed pressed her face and hands on the screen, it gave and she fell with it. It amazes me how many events had to take place for this to happen. The screens were sun screens and we didn't know or even think about the danger.

    Although Jessica has reverted to her tantrums at rehab she still is the same internally happy and active little girl as before. She isn't at all shy and talks to everyone at rehab telling them anything and everything. She makes a big joke out of poop. My husband was helping with bowel care and picked her up from the bed after the suppository and poop came out, landed on the floor and he stepped in it. She laughs and tells everyone about it. She made up a poop song. Something like: Don't tell your Dad that you went poop or he will ... She is such a ham. You never know what she might say or do. We call her spastic Jessica or sweet Jessica.

    Because of her active personality this injury has completely ripped out my heart, but I also know with Jessica's determination she will get through this and I expect good things to come.

    The therapists are impressed with her progress. She is really getting the wheel chair down. She does wheelies all over the place and goes so fast in the stair that I have a hard time keeping up with her. She just loves to ride the hand pedal bikes. We are going to have to figure out how to get one.

    Thanks for the well wishes and posts.

    Okay, I just added a picture of Jess as my profile picture. This is an old picture when she was around 5, but is the picture that has been on my mind since the accident.



    cxl

    "Let it snow for Jessica"



  4. #24
    Profile picture isn't showing. Hmm.. I added it as an attachment.

    cxl
    Last edited by gcblarsen; 06-20-2009 at 01:18 PM.

  5. #25
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    Quote Originally Posted by gcblarsen View Post
    She is home today on a pass and is doing very well. We will also pick her up tomorrow and then she only has Monday left before she comes home. Most days she has some type of melt down (hurting, sad or temper tantrum), but so far today she is doing great. The antibotics looks to have dealt with the bladder infection so she hasn't been crying about that. Each day is a new experience. I just want her to be happy and not sad or hurting. She is mostly happy, but the times when she isn't hurts me so.

    Tomorrow we are taking some gifts to the Maricopa Medical Center where she first stayed for a week. Jessica received so many gifts from some many people that we really need to give back. Since it is a county hospital several kids are homeless or in financial need and don't get much of anything. We are excited to go back to say Hi to the staff. One of the nurses called today to see how she was doing. She was in tears when we left and became very close to Jess.

    Everyone keeps telling me to take care of myself. I have been trying. The first week was the hardest since the injury was new and she was really struggling with not being home. Since then I've been getting much more sleep. I don't do well without my sleep. It is hard. It helps that my husband can spend a lot of time with her. I'm trying to go to work and then I typically head over to the hospital. Sometimes I just go home if she is doing well and if her Dad was able to spend time with her. It is hard not to be there with her. I just feel like I should be with her all the time. It is over an hour away each way, so I feel like I'm always on the road.

    I'm not the type to believe in miracles, but I so want to believe that the doctors were wrong with how bad her injury is. I'm very doubtfull that she will ever walk again without some type of cure. I just want her to have her childhood back. I keep asking her what she can feel and what it feels like below the injury, thinking that maybe she is getting more feeling than before, but I'm not seeing it. I'm sure she is sick of me asking. I've been reading posts to get an idea what might be possible with what she has been feeling, but it looks to be all over board. No one is the same and it seems that different doctors come up with "complete" or "incomplete" at different times. I don't think I'll ask cause I'm afraid of what I might hear. I think I'm better off waiting to see how she heals.

    Send your snow to Phoenix.

    cxl

    "Let it snow for Jessica"
    I was very sorry to read about your daughters accident. Glad to hear that she will be going home soon. Hope she had good rehab as that will set the tone for what the rest of what life is going to be like. Does your state have a Brain & Spinal Cord Injury Program like my state of Florida does?
    I hear they do some great things for folks in this state that have brain & spinal cord injuries. Are you also aware that there is an organization for care givers? I've read about it in Paraplegia News also known as PN magazine. It is published monthly by the Paralyzed Veterans of America.
    They also publish the Sports n Spokes magazine. It will be good if your daughter gets involved in para wheelchair sports such as wheelchair : basketball, tennis, hockey, wallyball, softball, badminton, bowling.. Wheelchair racing. Hand cycling, handcyle racing. Since she's been in Rehab have she been fitted with leg braces to get her up on her feet and train her how to walk in braces? Since she's a low level para there is the RGO (reciprocating gait orthosis). If she can get use out of braces they will be very beneficial for her health. She should also have a standing frame as standing is very good for circulation, for bowels, pressure sore prevention etc. There are standing frames that you can move around in & reach for things over your head. I don't know if your aware or not that such a device exists. There are also standing wheelchairs some are manual some are pwr & some are a combination of pwr & mnl stander. Standing in a wheelchair gets one at eye level with his/her peers. I wish you & your daughter & family the best that life has to offer. Take care of yourself as your daughter needs you.

  6. #26
    Right now we are more focused on care. We do have information on sports and the therapist wants her to get started swimming again. We are hoping to get her a hand cycle. She really enjoyed the hand cycle at rehab. They have a stander on order. We talked to them about a standing wheelchair, but the therapists didn't think it was necessary. They did mention at some point walking with braces, but I think that is going to be awhile. We really need to get the cathing down better before she starts school.

    Jessica had a great Christmas. We are very glad she is back home. We have our ups and downs, but pulling through. We went to the mall yesterday (very busy) and she managed through the traffic well.

    She is really progressing. While writing this she used the slide board totally by herself to get on the couch. These are big moments for us.

    Carolyn

  7. #27
    Sounds like she is making great progress! Keep it up we are pulling for her. Good to hear she had a great Christmas also. Give her a high five from me!

  8. #28
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    The best thing you can do for your daughter is to get her to a pediatric spinal cord injury hospital like Kennedy-Kreiger Institute in Baltimore. There is so much that can be done to help you daughter, especially while the injury is new. Please contact them IMMEDIATELY to see if there is any way you can take your daughter there! We have found, through caring for our C6/7 son that regular rehab hospitals and therapists are well meaning, but just don't have the specific knowledge you want for your child's needs. If you would like to speak to me, please e-mail me on the site at audreys. I would be happy to share our hardearned knowledge with you.

    Also, about a lift. Find a good rehab equipment company in your area. A chair lift won't help your daughter once she gets upstairs, because she will not be able to move around without her chair. Have the compay come in and give you options. Then someone (Possibly one of your friends that keeps asking what they can do to help) needs to look for funding, if you need it. Good luck! Please write. A

  9. #29
    So sorry to hear about your daughter.

    Tim's mom

  10. #30
    Hi, Carolyn (my wife's name, too!)
    What a cute girl! Jessica sounds like she's a happy little girl that will adjust well. That's your doing - congratulations.
    As to complete and incomplete - unless I'm very mistaken, that only denotes whether there is any feeling at the anus, thus whether or not there is any connection at all all the way down the spinal cord. My wife was injured 3 years ago (I just now mistyped that as "tears" - what a Freudian slip!), and we've seen continual, although glacial, changes: apparently complete changed to incomplete after a year or so. You can almost count on some degree of slow - very slow - improvement over the next years; rejoice in every small gain, but don't pin your expectations too high. Work with the way things are now.
    A chair lift might work, but only if you can guarantee there's always another chair waiting at the top or bottom of the stairs. It may be more practical to move her downstairs, at least at the start.
    Number one - be very aware of how to avoid pressure sores. That cannot be emphasized enough, and I don't think it ever is.
    Working on her independency is important, though it can be difficult when you want to help with all your heart. Holding back on occasion is, in the long run, kindest.
    This is a good place to vent, to ask questions and to discuss those things you would not feel comfortable talking about anywhere else - these people understand.
    Best wishes
    - Richard

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