Thursday, June 16, 2011

Knee Immobilizers

 When we began to  look at different options to help with Nina's spasticity, one of the first things that we considered were knee immobilizers. These knee immobilizers are supposed to be worn at night while sleeping. However, as we looked at how spastic, or "tight" Nina was, we quickly realized that the knee immobilizers would be too difficult for her to handle. If you remember from the video I posted before her rhizotomy, stretching her leg to make it straight was very painful for her, and there was no way she could have worn these and tolerated them.

The day of her rhizotomy, Nina got her knee immobilizers delivered to the hospital room. Now that the tightness was gone, it was time to start breaking her in into these fancy contraptions.

We began putting them on just for short stretches of time during the day, but the best results are when they are worn all night long. A few days after the rhizotomy, we tried to have Nina wear them at night. She could not sleep.
Every hour she was up crying and winning. It was quite the ordeal. And since our family appreciates sleep, and we were living in the hospital room with her, we usually would take them off after having her wear them 3 to 4 hours at night.

As we talked to her therapists they encouraged us to have her wear these braces at least 3 to 4 hours every day. Having her take rest time or play with the iPad while she was wearing them. With our move and the business of life, getting the knee immobilizers on was only happening about 3 times a week.
Four days ago I was having one of those days where I was frustrated. Frustrated that Nina is able to physically do so much but emotionally and mentally she is stuck. So I did what some of us mommies of kids with special needs do, I asked another mommy whose son has had a rhizotomy if what Nina was doing (or not doing) was normal. Natalie then asked if we had tried knee immobilizers, to which I quickly responded yes but we were not doing those, because we appreciate sleep too much. She encouraged me and said it had taken her son a week to get used to them. Andy and I talked about this, and decided to give it a week.
We talked to Nina about the "bedtime braces" and why it was important for her to wear them. We said she was going to have to wear them every night until her body started to work better. Nina went to bed with the braces no problem, but just an hour after going to bed, she was up and crying. We did the crying and crying until about midnight, where we knew we had to make a choice. Do we keep doing this, or do we stay with it.

I took Nina to my room and explained that she was going to have to sleep with the braces. And that from now on she really was going to have to wear them and it was unacceptable to cry because she was waking everyone up. I gave her a choice: go to your room with your sisters and sleep on your bed, or have to sleep by yourself because you are crying. Of course she chose to go back. It was half an hour later that I heard a little whimper, and just as it came it stopped...she remembered the warning. And then she slept all night long! And for the last 4 days, Nina has been wearing her knee braces all night long! She has not cried, complained, or even woken up. That little stinker! She figured out we had given up before and she was going to try again! But she realized we were serious and that was that!

As you can see from the pictures, the knee immobilizers are big and probably not very comfy. Nina is a trooper! She is doing so well and she is taking it better than I ever could. Because to be honest I would be crying and whining not wanting to wear those and I would not care if I had to go have my own room for as long as I could tell you I was mad I had to wear these big bulky things!


  1. WOW! Good for you Ellen. That stuff is SOOOOO hard to do. I'm sure they will make a huge difference!

  2. YAY! This makes me soooo happy! I am so glad yall stuck with it! Way to go Nina!

  3. That's great that she's now wearing her leg braces!
    Can you tell us a bit more about what they're supposed to do for her? Is it a constant stretching for her legs?

    I have to say (and I hope this doesn't come out wrong!), I'm not sure I agree with your approach with the crying. (Essentially, telling her to stifle it and suck it up -- at least, that was my impression from your post.)
    Kids who have grown up in an institutional setting are perpetually ignored in terms of their needs and pains. This act of discounting a child's experiences are actually extremely damaging from a psychological perspective.

    But on the other side of the coin, all parents have experienced crocodile tears! And a parent usually knows when a child is crying as a means to an end (vs. due to genuine distress, physical or mental.)
    But I would urge you to use extreme caution with Nina in this regard, especially because you've mentioned such a distinct delay mentally and emotionally. This is likely the reason.
    Also, is Nina seeing a therapist to help her work through the trauma of her past? So often, adoptive parents focus on the physical. But the child's mental well-being is equally -- if not more -- important. Her delays are most certainly the result of her experiences in an institutional setting.
    As someone with a background in psychology and as an adoptive parent, I can assure you that she will need to deal with her early trauma at some point. It's better if she confronts and deals with these issues sooner rather than later. If she confronts it later in life, the impact will be far more profound (and unfortunately, it usually involves deviant behaviors like drugs, sexual issues, etc.)
    Please don't take my word for it! Please, please consult someone -- even if it's just your GP. Her symptom -- a lack of mental and emotional growth -- is a hallmark symptom of a problem and any qualified GP will see that and a psychologist will *definitely* see that.
    In my experience, it's better to deal with these issues when the child is young, before the problem progresses to a point where it's noticeably causing disruptions in the child's life. In other words, treat her now -- she has a history of trauma due to living in an institutional setting; that's sufficient to warrant regular appointments with a psychologist.
    I urge you -- beg you -- to look into this for Nina. I know, it's not convenient while she's undergoing physical operations and therapy. But please take my word when I say that if you delay treatment until there's an bigger problem, you will regret it and the consequences will be much more serious and long-lasting.
    I'd be happy to chat with you via email or share my personal experiences with you if you have any questions. :-)

  4. Sylvia,
    Actually, I AM a psychologist and my degree even comes with the added tag line of counseling. Before I was a mom, I was a family therapist and I worked with children that were in the foster care system.
    I agree with everything that you say, and I do want to assure you that we have seen several specialists and Nina has had many different evaluations. I don't blog about every aspect of Nina's life because I believe that when she is older there will be some things that she will want privacy in.
    I am not sure how familiar you are with Cerebral Palsy, and while many of Nina's behaviors are due to her past, a lot of other issues have to do with Cerebral Palsy, especially when these behaviors are only seen when related to any sort of physical therapy. There is also a physical learned helplessness that we are dealing with here.
    While many of her tears are real, may of them are in trying to get out of something, and MOST of her tears have a lot to do with Cerebral Palsy related issues.
    She has verbally communicated with us and told us that she is mad with us, because every time she cried at the orphanage she got to do whatever she wanted. While stretching her (because we have to!) she has said she wants a different family so that she does not have to get stretched.
    Be assured that she was crying because she did not want to wear her braces.
    I am not sure what distinct mental delay you are referring to. Her delay due to living in an orphanage? Nina has shown great gain in her development and is almost "caught up" with her peers (not in any physical aspect though!)
    I will answer your question of what the braces accomplish on a different blog post though!
    And, I do have my e-mail address available here on my blog if you do want to talk more about this.

  5. Now it is very easy to contact with doctor.


Thanks for sharing your thoughts with me. If you do not subscribe to comments, make sure you check back for my reply to your comment.



Related Posts with Thumbnails