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Thread: good & bad!

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default good & bad!

    Hello!

    Lots going on here with school starting up! The Y classes and piano (for the boys) and all our regular appointments (PT, chiro)....I feel like I live in my van! Caitlin is now completely off the topamax now! She had a really great week when she was only on 15mg in the PM dose and after I dropped the last pill off, she had a semi-big seizure 2 days later. She had reported to me that she felt 'shakey' (her words for it) and when I brought her into the house from the van, she had the seizure when I was putting her down on the carpet. Her eyelids fluttered and her arms jerked up and stayed and her back arched. Lasted about a minute and then that was it. She was all fine then but over this week, she has been so so. She is blocked up again though, I think the med changes messed with her regularity again. Hope once that is back on track she perks up. I don't want to have to go back onto topamax, I just remember weaning off lamictal, we had her on 1/2 tiny pill FOREVER as every time we tried to completely quit she reacted badly. I want to give it a week or 2 and hope she stablizes. Cross your fingers! She has her dental 'surgery' on wednesday so it's going to be a busy week. Preop physical the day before so I will be putting a lot of miles on my van! They are just filling 2 cavities and doing cleaning and xray under sedation. Have to be there at 6am and hopefully home by noon. My mom just got a part time job so I am hoping she still can pick up Logan for me from his prek class. She retired last yr, but wanted to work part time somewhere just to fill a little time.

    Tyler has a consult with an ENT in 2 wks. His breath has just been rotten lately and I've been keeping track of when he wakes up and sleepwalks....didn't realize how much he did it until I saw on the calendar! Hoping they will schedule a tonsilectomy in the beginning of october so he is healed up for halloween. He is a mouth breather and I got some of that on video while he was sleeping to show the ENT. I guess with all Caitlin's needs, it's hard to notice the other kids medical stuff unless it is severe!

    I'm adjusting to having 4 hrs without kids...it is still very weird though. I am always looking over my shoulder wondering what Logy is up to and then realize I don't have to worry, he is at school! I have a big long list of stuff I want to get done around the house...slowly but surely!! :)

    Lisa O.
    Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)

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

    Just reading your post, I'm exhausted! I would think you need those 4 hours without the kids, just to maintain the energy for the other 20 hours!

    So sorry about Caitlin's seizure. Sending up a prayer that you can wean her completely without any more seizures. And will be praying that all goes well with the dental procedure. Hope she can start producing in the BM department soon. I'm sure that she'll feel better once she gets that sorted out.

    Is Tyler still having headaches? How's the bee sting? All better by now, I would guess. Keep us posted on his tonsilectomy date.

    When are you planning to apply for your chauffeur's license?

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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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    Oh wow, Lisa, you have so much on your plate. It makes me exhausted to read about your days. I am so deeply impressed by how you continue to seek the wonderful in your life in spite of such challenges, like making preserves, working out....the list goes on. I will say it (may sound trite, but I really mean it) - you are wonderful. Hope today and tomorrow are good days. Hope EVERY day is a good day! xDonna
    Donna, Mum to Natalie (20), ablebodied, kind and beautiful and Nicholas(23), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when Liverpool football club is losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Thanks! I did sign up for a Y class for myself too...yoga. Just had the first class on friday and it was so nice! I really have missed doing yoga, it really helped a lot with stress. With all the driving around I've been doing lately, I've been lucky my cd player in the van decided to start working again. I've been going to the library and checking out cd's to have something new to listen to in the van. It makes the driving more interesting! So many bands I like that I never got around to hearing more of their stuff, now I have the time! :)

    Tyler is still having headaches here and there. He has been having really good days at school though, his teacher made a point of telling me that when I picked him up the one day. That was nice to hear! The bee sting is all better, though they haven't learned their lesson. The boys were swatting at the bees at Quarry Quest today, well, at least Logy was smart enough to run! Well, time for bed, I have stayed up too late tonight 'ebaying' for halloween costumes!

    Lisa O.
    Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)

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

    Have you any ideas as to the cause of Tyler's headaches? Might the tonsilectomy help them?

    Yoga and music ~ excellent ways to reduce stress and maintain your balance. Good for you!

    What kind of Halloween costumes are you searching for? I say that, and then I realize that I can't believe that it is almost Halloween, and soon Thanksgiving, then Christmas ... agggghhhhh!!! I just created stress for myself!

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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!

    I am hoping they will take out his tonsils/adnoids...he sees the ENT on tuesday next week. I have been keeping track on a calendar anytime he sleepwalks/wakes up/any disturbed sleep....it really is quite frequent! I know with all Caitlin's stuff, I probably just didn't notice Tyler (sounds bad doesn't that?!). I've been noticing how rotten his breath can be (tonsilitis?). We even had the kids switch beds temporarily in hopes that Tyler can get more sleep. Really Tyler & Logy share a room and Brandon & Caitlin have their own rooms, but for now we have had Tyler sleep in Brandon's room so he can get to sleep earlier. Brandon is sleeping in Tyler's bed in the shared room since he likes to stay up and read and Logan takes a nap every day so he stays up a bit longer too. It has helped a little bit! I wish I could have gotten him in this week, but I'm busy with Caitlin's dental stuff. Pre-op physical tomorrow and the procedure on wednesday. Just cleaning/xrays and cavity filling under sedation but there goes a whole day! I'm lucky my sister can pick up Logan from school for me as I don't think we will be done by the time he gets out.

    Anyway, the fun stuff! :) I love to do themes for halloween, we've done star wars, harry potter, wizard of oz, narnia....this year- Doctor Who! I am sneaky....I LOVE the show and I bought the dvd's and we've been watching them as a family on the weekend evenings for awhile...so when I suggested that for halloween, the boys thought that would be cool! My friend usually has a halloween party every year and we take the kids out a few times trick or treating (our town is always before the 31st and then we go where my sister lives on 31st). And now our church has a 'trunk or treat' costume party too and last year they talked about maybe doing a contest! We actually got our picture in the paper when we did star wars! My bday is at the end of october so I've always loved halloween. Brian & I are going as the 9th doctor & Rose Tyler. Tried to talk the kids into being other characters, but they wanted to all be the doctor too....so we are also going to have the 10th & 11th doctors represented, lol! I am still trying to get Logy to be a dalek, there is a cute dalek costume on ebay for not too much. I do all my halloween on ebay. I might try to talk him into wearing a robot costume we already have and calling him a cyberman. Brandon's 10th dr suit came in the mail today (ebay)...it is awesome, looks just like the real thing...and he says "I can wear this for Christmas too maybe!" I was thinking for his first communion this spring but it was just too funny! 10th dr wears a dark brown pinstripe suit and I got a brand new one on ebay for $30! Much better than getting a costume from walmart that will fall apart the first time someone trips on it. Found a blazer for Tyler that I am 'watching' on ebay that will work perfect for his 11th dr. My mil said she would sew the elbow patches on it for me. Our only hitch...Caitlin wants to be snow white! She said we all should be her dwarves!!! LOL!! Which was hilarious when she said that at dinnertime last week...shows how much more alert she is now that she is off the topamax. But I did find a really cool snow white dress on ebay that I am 'watching' too. I am so glad ebay exists...I would never have time to search out all this stuff if I had to drive around to stores. I attached a pic of our Harry Potter theme from last yr. That was the first yr I talked Brian into participating, he made a great Severus Snape!

    Lisa O.


    Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)

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    Distinguished Community Member andromeda31's Avatar
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    Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)

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    can't get the pics to go up! Ugh! Have to work on it tomorrow though, gotta wash dishes and get to bed....early 7am PT for C. :)

    Lisa O.
    Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)

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    Good luck tomorrow, Lisa! xo
    Donna, Mum to Natalie (20), ablebodied, kind and beautiful and Nicholas(23), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when Liverpool football club is losing!
    Check out my blog: http://www.donnathomson.com


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

    Sending lots of positive energy your way for tomorrow's dental visit.

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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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