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Thread: Happy Easter!

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    Distinguished Community Member andromeda31's Avatar
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    Default Happy Easter!

    Hi!

    Wishing everyone a Happy Easter!

    Another jam-packed few weeks for me, all good things. Kids have had spring break, though our district only gets wed, thurs, fri & Monday. That is fine with me though. It is still not that nice out so more than that would really be a drag since we stay home. Caitlin has her botox appointment on Monday. The doctor is going to give it to her hip flexors (if I remember right, I am bad at muscle group names), this will make it easier for her to sit. She is so super tight that she does not bend well at that point for sitting. She will get another round of botox there during her spine surgery in July to really get her loosened up since she will need to be able to sit to change positions during healing. Just came home from Easter dinner at my parents' house tonight. Early church and lunch at Brian's parents' house tomorrow...and of course an early morning for kids to hunt for Easter baskets! Just had to pop on here quick and drop a line that we are fine! :) Time for this Easter bunny to go assemble the baskets....I've been waiting to make sure the older boys are asleep.

    Next week my calendar is so empty, I will be able to find time to write a nice long update! Wrestling ended last week which has really freed up a LOT of time!

    Hope everyone is healthy!!

    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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    HAPPY EASTER!

    ((((((Lisa)))))) ~

    Good to hear from you! So happy that things are going well in your family. I'll pray that the Botox is effective in releasing the tightness in Caitlin's muscles.

    Your calendar is empty next week?! Wow, are you sure about that? Might want to double check! That is incredible for you!

    Our Update ~

    So far, April hasn't been a great month for us. On April Fool's Day, Jon woke up with low SATS and a high heart rate, eventually developed a temp of 100, and filled with fluids. It's been a very long time since that's happened. This came after a bout of insomnia, so we were on pins and needles worrying about seizures. Fortunately, he was fine the next day, and he slept 10 hours last night.

    Technology hasn't been our friend.

    Our ancient keyboard bit the dust. Jim went to the Apple store in the mall, as it opened last Sunday morning, and he said it was jam packed with "geeks and nerds." Here's this old man, who types with one finger, trying to buy a new keyboard in an Apple store, where everything is done by computer. Poor guy, but they took pity on him. New keyboard is great!

    We got a new mouse as well. It's a Logic Tech, and it's the size of a rat, not a mouse! I haven't tried it yet, because I don't have Michael Jordan hands. It didn't look that big in the picture on the internet!

    When attempting to print out the estimate for trimming our eucalyptus tree, we discovered that our printer was no longer working. Timing is horrible, because I have to print out the tax forms and our tax return. Yes, I left it too late. Again.

    After a call for tech support to HP, we were told we needed a new printhead. I ordered it over the phone with the techie, and he sent us the wrong printhead (for a different model). So back to HP, a new techie, then her supervisor, and we await delivery of the correct printhead.

    Jim moved our TV and then we couldn't get a signal. We messed around with that for too long, before I called the cable company, and we were given the very simple solution (if you know what the solution is ...).

    All of this causes me to wax nostalgic about the simpler days of my youth. Technology is wonderful, until it's stressful.

    Jon's nurse will visit on Friday to change his catheter and trache. The following week, I'm hoping to schedule a visit with Jon's GI to remove and replace Jon's GTube. Next month, Jon's new IHSS case worker will visit for a reassessment. That will be delightful, no doubt.

    Have fun Easter egg hunting tomorrow. Stay well and enjoy your empty calendar week!

    HAPPY EASTER TO ALL~

    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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    Hi Everyone and Happy Easter!
    Easter dinner.jpg

    We had a lovely Easter day today - church in the morning and this afternoon Nick and Tom, his helper came for an early dinner of roast chicken with all the trimmings and cake that Nick helped me ice and decorate. The bunny brought Nick a chocolate Stanley Cup (ice hockey award!) - all in all a good day. Nick was really excited so very tight and probably he'll be super sore tonight, but he's willing to pay that price once in a while for a good time. We are in a trial right now of Lyrica, a nerve pain drug. Hopefully we can up the dose soon because this small dose hasn't really had an effect yet. Liquid baclofen to supplement his pump does help. Anyhoo, life feels pretty good right now, so I'm not complaining!
    Rose, I'm sorry that you're having trouble with technology (I HATE when that happens!) and especially that Jon had symptoms again. Hopefully he's better today and you're not heading into a difficult spell. Lisa, you are amazing - don't know how you keep up with Caitlin and your boys! Sending much to all, Donna xo
    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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    Smile Happy Easter Donna, Jim, & Nick

    (((((Donna)))))) ~

    What a wonderful photo!!! You all look so happy. Gorgeous cake! And the Stanley Cup chocolate is so clever! Ideal for Nicholas!

    Prayers that Nick doesn't suffer from the day's fun and excitement, and that the Lyrica works effectively to reduce his pain without any side effects.

    Technology is driving me bonkers! We've been trying for days to figure out why the DVD player in our iMac isn't working. Jon gave Jim the new Hobbit DVD for Easter. During Jim's night shift, he has to keep the sound on the TV so low that he can barely hear it. So the computer is the perfect solution, since we have headphones, and a big screen monitor. It's ridiculous how much searching and scratching I've done to figure out this problem. We've asked some computer literate iMac-using friends for assistance.

    Jon is much better, and back to normal sleeping. Catching up with 10 hrs/night.

    Great news: It may rain for several hours on Tuesday! YIPPEE!!! Governor just cut non-agricultural water consumption by 25% statewide. NY Times has an indepth article about our drought. It's pretty doggone terrifying. Yet, fracking, which uses tons of water, and causes earthquakes (like ours last year), continues.

    Your cake looks so scrumptious! I am salivating here!!!

    So glad you had a HAPPY EASTER ~ may the rest of the year be just as joyful.

    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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    I loved coming here today and reading updates from all of you!
    Lisa, I hope the botox helps Caitlin. Kathleen had her's a couple weeks ago and gets it ever 4 months. It worked great for several years but not so good now. That's wonderful to have a break in appointments! We don't have any this week either. That's good and bad it's sometimes nice to get some over with on our break. Kathleen has all week off for spring break. But it's also nice to have the time to just do whatever we want. She has 2 appointments next week.
    Rose, boy you have a lot going on right now. Why does it seem everything goes at once. I'm with you on the technology stuff... You put into words exactly how I feel... "technology is great until it's stressful" My husband and son are pretty good computer geeks so they can help me most of the time. I hate going into the Apple store in our mall! It's very intimidating. Praying that things get better...
    Donna, What an awesome picture! You all look so happy. Where did you get the chocolate that's fantastic! Beautiful cake too.
    Our update... Kathleen has been feeling really good it seems. "knocking wood" We're on spring break this week. I wish the weather was more spring like but it's not snowing or freezing so I have to be grateful. She has no appointments this week which is amazing. We had a great Easter Sunday at my sister's house. Next Monday Kathleen has a follow up appointment with the urologist (all is going well with the catheter) so glad we made the choice for the surgery. Her appointment at Shriner's is next Tuesday. I'm really hoping they can shed some light on some of her other orthopedic issues as well as her neck. Not really sure if the botox helped much, she stopped complaining about it being tight for about a week but has started to complain again already. She also says her left leg is cold. She keeps me on my toes! I'm looking forward to the week off with her!
    As always I keep all my friends here in my prayers. Thanks for updates.
    Mary Grace

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    Happy belated Easter guys!

    Lisa, you may be thinking of psoas muscle. Be careful with the botox near her hip nice it can lead to issues with urinating. At least that's what I was told in 2006 and 2010 when I considered botox myself. Good luck with the surgery.

    Earth Mother, I know computers always seem to flip out when you need them. Have you considered a portable DVD player from Radio Shack as a backup? It's the size of the laptop. Macbook tends to work better than iMac in my experience. I have a Macbook Pro. Did you try the tech area of this forum for help?

    I'm busy with stuff related to my films that I don't have permission to post yet but I will soon.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace)))))) ~

    Do you and Kathleen have plans for Spring Break, or are you going to wing it? Wonderful to hear that Kathleen is happy and that her catheter is working well. What a relief for both of you! I'll be anxious to hear what you learn from your visit to Shriner's. I'm so glad that you're going there for an assessment and opinion.

    Have lots of fun on Spring Break!

    ((((((funnylegs4)))))) ~

    Jon has a very small (old) portable DVD player, which we use during power shortages and at the hospital. I'm not sure whether it accepts headphones ... will have to check that. But, according to our friend, who has the same exact iMac that we have, we should be able to watch DVDs and BluRays on our iMac. Something is funky. My friend and her computer savvy kids will probably figure it out. Maybe a setting that I have to change ... something simple, which, of course, I cannot figure out!

    Thank you for suggesting the computer/tech forum here. I haven't posted on that forum, because it doesn't seem to get much activity. And it's not a big deal. It's strictly for entertainment/recreation.

    What is frosting my cookies right now is the printer problem. With any luck, the new printhead will be delivered tomorrow, and it will be the right one for our printer model. I have to get the taxes done!!! NEED PRINTER!

    Intrigued by the mystery of your secret film activities ... awaiting the revelation ...

    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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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Mary Grace)))))) ~

    Do you and Kathleen have plans for Spring Break, or are you going to wing it? Wonderful to hear that Kathleen is happy and that her catheter is working well. What a relief for both of you! I'll be anxious to hear what you learn from your visit to Shriner's. I'm so glad that you're going there for an assessment and opinion.
    Have lots of fun on Spring Break!

    ((((((funnylegs4)))))) ~

    Jon has a very small (old) portable DVD player, which we use during power shortages and at the hospital. I'm not sure whether it accepts headphones ... will have to check that. But, according to our friend, who has the same exact iMac that we have, we should be able to watch DVDs and BluRays on our iMac. Something is funky. My friend and her computer savvy kids will probably figure it out. Maybe a setting that I have to change ... something simple, which, of course, I cannot figure out!

    Thank you for suggesting the computer/tech forum here. I haven't posted on that forum, because it doesn't seem to get much activity. And it's not a big deal. It's strictly for entertainment/recreation.

    What is frosting my cookies right now is the printer problem. With any luck, the new printhead will be delivered tomorrow, and it will be the right one for our printer model. I have to get the taxes done!!! NEED PRINTER!

    Intrigued by the mystery of your secret film activities ... awaiting the revelation ...

    Love & Light,

    Rose
    Don't worry about whether the tech is for entertainment or not. I post there for multiple tech reasons. Yes you can watch DVDs with iMac. The DVD drive just doesn't seem to work as well as Macbook. With a computer you can change the "region" (region is a code on a DVD from a country so it plays only in that country to protect selling rights) setting for the DVDs so maybe the player or DVD is the wrong region. I had this problem with a DVD-R that was burned with a UK region setting while my computer and TV were U.S region. If the portable DVD player has a headphone jack it is usually hidden on the side of the device and looks like a tiny hole. If it doesn't then you can buy a new DVD player on home shopping or Radio Shack for cheap. As for the printer try a library or stables if you are desperate.

    The film stuff involves a public event that will be promoted starting around April 17. They just asked that I not promote yet as I don't have everything confirmed yet.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Thank you for the advice. I tried to play two movies, both American made, and a home video made by a friend. Nothing works. The DVD Player has a message: Supported disc not available. I have no idea what that means. On the Mac site, I read that the Player doesn’t recognize video content burned onto certain types of DVD-RW discs. It suggested that we try burning the content onto a DVD-R disc instead. I have no idea how to do that. And I don't have the time to do it anyway.

    The printhead arrived today. It was the correct one! YAY! It worked! YAY! Now I can finish the taxes! yay ...

    More Good News: IT IS RAINING! YAY YAY YAY!

    Looking forward to your announcement later on this month.

    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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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    Thank you for the advice. I tried to play two movies, both American made, and a home video made by a friend. Nothing works. The DVD Player has a message: Supported disc not available. I have no idea what that means. On the Mac site, I read that the Player doesn’t recognize video content burned onto certain types of DVD-RW discs. It suggested that we try burning the content onto a DVD-R disc instead. I have no idea how to do that. And I don't have the time to do it anyway.

    The printhead arrived today. It was the correct one! YAY! It worked! YAY! Now I can finish the taxes! yay ...

    More Good News: IT IS RAINING! YAY YAY YAY!

    Looking forward to your announcement later on this month.

    Love & Light,

    Rose
    Ah! I had those kinds of errors when I tried to make DVDs of my films. The simplest explanation is what the mac site told you where DVD-RW is not supported. The easy way to check this is to go to "About This Mac" and find info about your DVD drive. My last mac didn't have a proper "Super Drive" so it didn't burn/play DVDs the way it should. It's actually easy to burn DVD-Rs. You just get software that burns them and a pack of blank DVD-Rs and leave the DVD alone to burn. Disk Utility in Mac has the ability to take the data off one DVD and burn it as as disc image onto another blank DVD. If you want I can check to see if it will work to burn a DVD-RW to a DVD-R and pm you the instructions the way I learned it from my editor. In general I was told DVD-RW should be avoided. They are kinda crappy.

    YAY! Thanks! I'll post it as a blog too.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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