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Thread: Happy Shunt Anniversary! Caitlin update...

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default Happy Shunt Anniversary! Caitlin update...

    Hi!

    Yesterday was Caitlin's ONE year shunt anniversary! Yay! This is the longest time a shunt has lasted for her since 2007! Shocking! :) She had a topamax increase right before Christmas and that has been working out well also! We have not seen any drop seizures and much of the bad behavior has gone also. There have been a few reports of staring, but I have not personally observed them yet. I also have not noticed the orthostatic hypotension anymore also since the med increase. We've been having lots of good things lately.....best ever, she got a brand new seat for her wheelchair last week! :) It is awesome...memory foam cushion with this metal finger/piece under the foam that can be bent any which way to conform best to her seating needs. This is from a new seating vendor we were hooked up with when our old one discontinued doing wheelchairs. Never thought that would turn out to be a good thing! :) They really listened to my needs, of course, I know better now what I want in a wheelchair which helps. This new seat feels like it has taken 20lbs off the weight of the chair. The old configuration weighed 70 lbs w/o her in it! I lift it into the back of the van with my 2 hands (no mechanical lift). When I lifted the new, it felt so much easier! Much better for my back! The old seat was a metalcraft system, the new is a wood platform with the memory foam/metal finger tray on top of that. I love it! Plus the seat and the backrest are 2 separate components so if I should ever need to break it down to fit in a car trunk we could actually do that. Now that she is feeling much better, she has been sitting up in her chair more and is able to do so much more. She has been doing puzzles, coloring, playing her new domino game. She just seems much more cognitively there with the new med increase. I am very much enjoying it as I am sure she is too! The only bad thing going on is her PT, which is still down to once per week...darn budget cutting at the state level. We are only authorizing thru May though as I plan to ask for 2x/wk in the summer as their logic for 1x/wk was that school should do some (even though I had letters from the school PT & principal why they can't/don't). So in the summer there is no school so I am hoping that 2x/wk will get approved...and I am hoping then if she is feeling this good that she can make some good gains to keep it into the fall as 2x/wk. My grand plan! :) For her spinal stuff....we are down to once a week at the chiropractor now which is where she will stay at (1x/wk). We go back to the orthopedic surgeon for xrays in April I think so soon I will be stressing about that, but for now, I am enjoying her good health and trying to catch up around the house all the stuff that I neglect when things are not so good! Today I finished up the piles of papers I had not filed away for 5 years....quite an accomplishment! The nice thing about letting that go was most of it I could just throw out! Don't want to let it get that out of hand ever again though. Hope all is well with everyone else here!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #2
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    Congrats Caitlin on your anniversary.

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin))))))

    I love good news, and you have lots of it! YAY! :)

    How wonderful that Caitlin is doing so well, and that the med increase has been beneficial to her. No seizures, and playing with puzzles and coloring. Such great outcomes!

    Congratulations on the Shunt anniversary! And the wheelchair! It sounds like it is just what Caitlin and you needed. I'm so happy that the new wheelchair worked out well. No doubt that the better seating is also helping Caitlin to be more alert and interested. And the chiropractor is likely helping too. Try not to stress about that. Things are going really well now. Focus on that.

    If only those in charge could understand the value and importance of PT. It's always been hard to obtain, and I find that incredible. Of course, all of our children would benefit from PT every day!

    Isn't it a good feeling to get those papers organized? I know exactly what you mean. Who has time for those kinds of things, or even any energy to deal with them, when every day presents a new challenge or stress? When Jon is doing well, I clean the house like a whirling dervish, and I organize so well I'd put Martha Stewart to shame! (Not really ...)

    May 2012 be the year when everything goes perfectly for Caitlin and you! You're certainly off to a stunning start! :)

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #4
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    Three cheers for miss Caitlin and the shunt anniversery. She is very brave with the shunt and it is wonderful that she is doing well.

    Great to hear about the wheelchair. That is cool and miss Caitlin will feel so much more confortable.

    I am sorry to hear about the PT reduction. That is a real pain.

    Congratulations to you too Lisa for all you advocating for Caitlin. Without your support she wouldn't be where she is today.

    Best wishes as always for a great 2012 year.

    Seeya,

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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