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Thread: quick update!

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default quick update!

    Hi!

    Just a quick update...called neuro office and reported the 2 seizures C had on monday...I suggested going up on the depakote as the levels have been fluctuating and at times are rather low. They agreed. So starting yesterday, she is back at the dose she was at before starting felbatol...which she had been doing very well at so no worries there! Taking her for the annual neurosurgeon checkup tomorrow...looking forward to a 'boring' visit! It will be nice to say, 'hey this is how she is supposed to be!'. :) It works out well as there is only a half day of school so she won't be missing as much by being gone. Tyler is improving! It was rough there for a bit, felt like I had a newborn the way he kept waking up and screaming! At least with a newborn, I would feed them and put them back to bed. Much harder to convince a screaming kid who is in major pain that swallowing some medicine will help it go away! Yikes! I plan to catch up on some sleep tonight for sure now that he's been sleeping all night again. I am looking forward to getting all the kids back in their rightful beds...we had switched them around -had Tyler & Brandon switch so T was in a room alone and B shared with Logy. Brandon has been a really good sport about it. We kept saying, it's still your room, you just sleep in the other room until T gets his tonsils out. We're having Logy evaluated on tuesday for tonsil/adnoids since we see many of the same things in him that led us to get the other boys' tonsils out. And (I am so mean), I also have Brandon scheduled to get his baby teeth (2 next to the 2 front ones) pulled the day before thanksgiving. The orthodontist recommended this for him to make room for the permanent ones. I had to have a bunch of baby teeth pulled when I was that age (from them not coming out) so I know it's not really THAT bad. I'll have to get him a nice treat though...it was the only day I could get him in as they have a half day that day too! I think by the end of this month I will be burnt out on medical stuff.

    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!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Hope you and Caitlin had a good, boring visit with the neurosurgeon today. Hoping also that the Depakote adjustment will do the trick in keeping seizures at bay. My guess is the fluctuating levels correlate to her growth spurt. I remember having to readjust dosages for my boys, when they had growth spurts.

    Awww...poor Tyler. Wishing you all good night's sleep from here on. And get all of those medical and dental appts. over with, so you can focus on the holidays. I imagine your hands are pretty full during the holiday season.

    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.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    We had a GREAT visit today! The best thing of all....don't have to go back for 2 years! Yay! (knocking on some wood right now!!) It was so nice to go and not be complaining about symptoms. I sure was tired from all the driving though~we live 2 hrs away from Children's Hosp. It was funny when I brought our papers to the desk lady after (then they enter in the computer a reminder notice for whenever you're supposed to come back)....she knows us by sight from those yrs where C was not doing so well and always coming in....she was cheering with us when we said we didn't have to come back for 2 yrs! :) Though, then I laughed and said, well, we will be back here in 2 wks for neurology! LOL! But that won't really be a big deal either...though there is always a little stress beforehand for me, can't get away from that even when I know it's an easy visit. Tyler is much improved today! He even ate some pizza tonight so I really think he is over the worst of it now. I am going to switch him back to his real bed tomorrow...soon I hope to be able to put the bunk beds back together. I think that will help T & Logy get along better over sharing a room.

    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!!

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    Oh boy, Lisa, you sure have your hands full! So glad that Caitlin's appt went well! Good luck with dentists, tonsils and getting some workouts at the gym in between. Love you, my friend. xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    I'm sorry C had seizures but wow that's amazing that you don't have to go back for 2 years!!! So happy for you!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    YAY! Great news! Isn't it wonderful when the medical staff understand the magnitude of your joy?! That's exactly the kind of relationship we should have with medical providers and their staff.

    Eating pizza is a good sign that Tyler is on the mend. I'm sure you will all get better rest and sleep once everyone is back in their own rooms and beds.

    And ... 2 hours to and from the hospital is 4 hours of driving. (I did that without a calculator! ) That's a LOT of driving! I do not envy you this at all. Hope you never have to go there during inclement weather. Our hospital is 8 minutes from our home. I can't even begin to imagine driving 2 hours to get to a hospital. Wow. Bless your heart.

    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.

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    That's good news! Wow 2 years those are nice words to hear especially if you have such a long drive. I hope everyone is helathy and happy for the upcoming holiday.
    Mary Grace

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