Highs and Lows

Well, I’d like to put up a big ole post, but I went to type it and found myself blank. I guess days away from the computer can make you blank.

Anyway, the good news these days is that Charlie has started to pull himself up onto low steps. He does it from a prop sit and he also does it from the belly-crawl position. His PT is over-the-moon excited about this new development and so am I.

We are managing the tantrums. Time out in his bed seems to be effective. We’re also pretty much glued to our schedule, but it’s working and that’s the important thing.

On the downside, my PT is ready to have a medical equipment vendor come out to the house and help us figure out a good wheelchair option for Charlie. You see, before we know it, Charlie will be going to school and we’re going to need a good, supportive option to get him through the lessons. Right now I just cart him everywhere in an umbrella stroller, which probably won’t be an option for very much longer. I’m not upset about the wheelchair part. There’s this handy chart that helps put kids with CP into distinct categories. Charlie is easily a III. If I follow III all the way into adulthood I can see that he may need to use a wheelchair–especially for long distances.

I want to be clear about something–I do believe that ABR and Feldenkrais will help him make gains that this chart doesn’t account for. We’re already starting to see him make reciprocal movements with his legs, which is more common in II’s than in III’s. He’s also pretty good at playing in the sitting position although balance is definitely an issue. But, he’s still got a long way to go, and I don’t think it does him any justice to keep him from interacting with others on their level.

So pretty soon I’ve got to pick a chair. And that’s the yucky part. I wish there was a manual! I imagine it’s very hard to decide these things and insurance companies only pay for one wheelchair every couple of years, so I better get it right. The pressure! Gah!

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  1. Candace says:

    Hi i'm Candace, mom of a 5 yr old daughter with spastic diplegic CP. I found you through Max's mom. I can appreciate the chair hunt. Just spent 6 mo. doing the same. Would love to chat w/ you. Could you tell me how you put that chart about the levels of CP abilities on your blog. I would like to post it on mine. THnks so much. By the way, you should ask the co. providing your equipment needs to obtain a loaner of a wheelchair that you might be interested in. They might not have one but they should be able to get their hands on one. Faith seems to be about in the level 3 area and we chose the Convaid convertible cruiser w/ detachable wheelchair wheels. So it can be a reg. large stroller or she can push some as she gets bigger and stronger. Hope this helps!

  2. therextras says:

    The GMCFCP (handy chart rolls off the lips easier) is an good tool and I am pleased it is making the rounds in the US now. Notice that it was published in 1997 – meaning the data was from children with CP in the early '90s or over 10 years ago. So, it may be a good tool for classifying characteristics of children for easy identification and communication (she's a III is shorter than describing her), but it might no longer be predictable due to techniques being used now but not back then.

    For being 'blank' you sure found ample to write.

    I feel 'blank' for giving you one succinct thought to help you with the chair decision. I'm also a bit miffed that timing is not such that the series I plan to do on equipment will not likely begin for a couple of weeks.

    But I know you have good pro people and good other people helping you and choosing a chair is kind of a 'being there' kind of thing. It might help if you just put into words what you want the chair to do for Charlie and you before the options are spread before you. Barbara

  3. terriblepalsy says:

    My limited advice on this issue is to find a way for Charlie to get around on his own. Whether it is by walking frame or wheelchair or powerchair – the means isn't important – it's the getting around independently that is important. And is exceptionally important when you get to school.

    Charlie is doing well. Congrats.

  4. I am so happy to hear that he is making great progress. I love the fact he can sit up a bit, that is awesome! He inspires me to have hope

  5. wherever HE leads we'll go says:

    Great to hear about Charlie's progress – that is wonderful news!

    I can understand your feelings about the chair. We just started the process of ordering a wheelchair for my daughter (21 months old tomorrow). I am excited that she will have some mobility and I know the chair will give her the support she needs, but I also think it just stinks that I have to get a wheelchair for her. When I was pregnant I certainly didn't dream of the day I would order a wheelchair for my child. UGH!

  6. sitting on the mood swing at the playground says:

    Glad Charlie is making such good progress! I hope your PT or the medical equipment vendor can give you some tips on the chair.