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Thread: Missing out....

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default Missing out....

    Hi!

    Glad to be home and sleeping in our own beds! We mostly had a resting around the house weekend...not totally by my choice though. Saturday, was kindof a lazy day...my mom came over and I helped her make a thank you photo card for my dad's retirement stuff and got it ordered (they don't have a computer). So by the time I got in a short workout, showered, fed the kids lunch....it was 3pm before I was able to get out the door to take the kids to the library. I really wanted to get the next 3 books in the series I am reading and some kid movies & books to have on hand for the week. I was glad I did that as after supper I started feeling yucky! Low fever and just tired. I was bummed as today was my aunt & uncle's 40th anniversary service & luncheon. I was hoping we all would be healthy and able to go, but when I woke up today I was still 99.0 and feeling not the best. And Caitlin's eyes were doing the 'floating' (seizure activity). It stopped after I got her dressed and up in her chair for breakfast (and morning meds)....just wish that it could have happened while hooked up to the eeg!! So we had another lazy day at home. C was actually pretty perky today, asking to color and do stuff which was nice to see! I did choose for her to miss the 4th grade trip to madison tomorrow though. The way she was still not 100% on friday made me make the decision to keep her at school instead of sending her on a 2hr bus ride there and another 2 hr trip home. They are going to visit the state capital and also the zoo there. Brandon is going too and I was supposed to chaperone for his class. I feel bad having to miss....I told his teacher on friday that I had to back out with C not feeling 100%. I had mostly signed on to chaperone so I could be there in case something went on with C, but with the weather being so cold & rainy/snowy I don't think it would be good for her to be out in that either. I didn't think he would care that I wasn't going, but when we were talking about it at supper tonight, he was kindof sad that I wasn't going. Nice to know that it's still cool to have mom along, but I feel bad having to miss out. :( He has a camera so I told him he should take lots of pictures! We're also trying to decide if we should go to Brian's cousin's wedding next month. Ugh...it's so hard not being able to commit to stuff ahead of time wondering if we'll be healthy or not.

    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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    Lisa, I'm glad to ehar your getting some rest, sorry it's because of some setbacks. I hope that she's back to %100 very soon. I know exactly how you feel about making plans and deciding when the plans need to be changes or canceled. I think I would have made the same decision you did about the trip. Just yesterday we had plans to go to a birthday party and Kathleen was sooooo excited. She's been wearing a foley catheter since Friday and has not been happy with it. It's also been making it difficult for her to empty her cecostomy flush. She cried for over an hour about not being able to get ehr flush out because it didn't feel good to push with the catheter in. Of course we were supposed to be getting ready for the party. The whole time I didn't know wether to cancel going to the party or risk having an accident.She got most of it out and I finally got ehr dressed and ready to go and then she had an accident, we cleaned up,got dressed again and crossed our fingers and toes and went. She didn't have any accidents thank god and she had fun but I was worried the entire time. It reminded me how much harder life was before her cecostomy! Every day was like that accidents pain etc... I hope she's doing better and your both rested.
    Mary Grace

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    I sure understand, Lisa. It's so hard to make peace with never being able to make plans. I always missed family weddings because I stayed home with Nick. That's why I named my book "The Four Walls of My Freedom"! lol I sure hope you guys catch a break soon though with your health. Wow, you've had the winter from H___ this year! I remember our ped saying that it's 'normal' for children to have 10 colds/flu per year. That pretty much makes them sick ALL the time!!! Good luck, my friend xoxo Donna
    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


  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    I hope your temp is normal and that you're feeling much better today.

    Planning ahead ... I hear ya. We haven't been able to do that for about 15 years! I haven't been to the dentist since 2007! I plan on it, and then, Jon's in the hospital, or at home recovering, or ... But I'm going to see her this year, before my teeth fall out of my head! Fortunately, she's quite understanding of our situation and will accommodate me. But I hate to make an appt., then be forced to cancel it, leaving her in the lurch for a patient.

    You've had an exceptionally difficult time with viruses this season, but with some luck, these bugs will begin to fade in the next month. You should be developing some immunities by now!

    Do you all take a Vitamin D3 supplement? I highly recommend it. It works for us.

    Sending healing energy to your family with positive thoughts that you will make it to the wedding next month.

    Love & Light,

    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Been there Lisa. I hate when I get sick and have to cancel stuff.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  6. #6
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Feeling better (since yesterday)...yesterday was the first day all my kids were in school and not home sick since March! I used to take a D3 supplement, but I think I overdid it last year when I had the abdominal pain...they thought it was gallbladder pain but nothing showed up on an ultrasound but I think it was a kidney stone from overdoing the D. I just do a 'one a day' multi now. I've also started wiping the kids bathroom with the bleach wipes daily...they are slobs (no nice way to put it! LOL!). And I know they don't wash hands enough but I have become a nag about asking them if they did, then they give the guilty look and then I make them do it. Much better than being sick though!! Went to the gym today (for the first time in a month!) and did yoga...boy have I missed that class. It helps my stress so much! I've been keeping up the miralax on Caitlin, she hates it but it isn't too bad getting it into her. I mix it with about 2oz OJ and she drinks it down with supper. She's been pooping right at bedtime every night which actually is a convenient time for that so I am planning to just keep on with a small dose of that daily. I don't think the exlax was helping her anymore so we are going to quit that. I would rather her 'go' at bedtime when we are home vs daytime when we are out and about or she is at school. She has been doing great since getting back to 'regular'. Had a great morning at PT yesterday and did great at school so far...her teacher said it is like the old Caitlin is back which was so nice to hear! Off now to work on laundry, I am finally getting caught up on that! :)

    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 thank goodness, Caitlin is back and so are you (at yoga and laundry!). May it last. xoxo
    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


  8. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin))))))

    Yay for Yoga!!!

    Yay for Miralax!!!

    Yay for School!!!

    Yay for ... Laundry? Of course! Yay for Laundry!!!



    Love & Light,

    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Wow it's been a long haul for you guys. So glad everyone is doing well and back to school.Praying this is a long stretch of wellness.
    Mary Grace

  10. #10
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    Lightbulb Killing the School Germs

    ((((((Lisa))))))

    I have a cheap and effective method of killing germs in the school:

    Get a cute basket, and place inside of it

    A bottle of Hydrogen Peroxide
    A roll of paper towels
    A box of non latex medical gloves
    Some fake flowers or cutsey stuff to frill it up a little
    A chocolate bar or a brownie

    Tie a bow on it.

    Give it to your kids' teachers.


    Gift note: Thanks for keeping it clean!

    Voila'!

    Love & Light,

    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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