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Thread: Final in blog series about advocacy - The Roundup

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    Default Final in blog series about advocacy - The Roundup

    http://www.donnathomson.com/2013/03/...3-roundup.html

    Happy Easter to everyone here on CN2 !!!
    Donna xox
    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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    Thumbs up

    ((((((Donna))))))

    What a wonderful, enlightening and informative series! You really are quite amazing!

    I'm sorry that I've been consumed by other things recently and haven't properly responded to your blogs in this series. I hope all of our parents are taking advantage of your advice and wisdom to build a team of support.

    I went to the website for the rebroadcast of your radio interview tomorrow, but I can't figure out where to go on the site to find how to access it. Will it simply be on when I click on the website tomorrow at 4:00 p.m. EST? Please forgive my computer illiteracy.

    I'm so proud to know you and call you my friend, Donna.

    Prayers for you, Nick, Natalie, Jim, and your mum and family.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    ((((((Donna))))))

    Jim and I thoroughly enjoyed your radio interview today. I found myself nodding in agreement with everything you said.

    You had to take charge, of course, of Nick's care, which I think is the case for most of us. Dad has the paying job outside, Mom has the non-paying job inside. In our case, my ex and I both had to work outside to earn enough to support our family and pay off his college debt. After our divorce, I had to work to support my boys. Still, I was the custodial parent with the final vote on anything relevant to my boys. He never attended one IEP meeting, any doctor's appointments, and only one clinical session with occupational therapy. He also left the country. So, it's a good thing I did take control from the beginning!

    I loved your story about the banana bread! Such a simple thing that means so much when you're in a crisis situation, or just completely worn out from non-stop crises. I'm so glad that she made banana bread for you, and I'll bet it was delicious.

    One of our neighbors often said to me, "Well, I would cook for you, but I don't know how to cook for vegetarians."

    I generally replied, "Well, thank you for thinking of us." One time she said it, and I responded, "Do you know how to steam vegetables?" She nodded. "Then you know how to cook for vegetarians."

    However, she never brought us any food. Our other neighbor made a vegetarian Greek pizza, which yielded 3 dinners each for Jim, Jon, and me, during Michael's final illness. Man, that was the best pizza!!! She didn't ask. She just made it and brought it over, put it in our oven, and visited with us while it cooked, then served it to us. Now, that's a care giver!

    I smiled through your discussion of your on line support community. We love you too!

    Having a team and support system is truly vital to every care giver. Great advice, Donna!

    Unfortunately, we missed about 15 minutes, as we needed to pull Jon up in bed. We're doing it less, which is better, and it's easier to pull him up in this bed, as he doesn't slide down as far. Wish I could have carried the computer with me, but that's impossible! We're not wireless here.

    Loved the interview! Love you!!

    Thanks for all that you do for all of us!

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Thank you, my dear friend. Happy Easter to you, Jim, Jon and Angel Michael! I hope you have a lovely Easter celebration - what are you making? We're having baked ham, scalloped potatoes with cheese, green beans and chocolate cake. Jim's just left this minute to go and get Nicholas who apparently is very sleepy today. He won't be able to eat at all if he isn't completely alert. We'll see how it goes. And maybe we'll forget the chocolate cake if he can't eat. We'll just have a little ice cream with chocolate sauce. That should go down easily. Thank you for the kind words about my interview and the blog series. I hope a few folks find the messages helpful. That's what it's all about. I send you all a big and gentle hug - I love Easter because I can feel the love around me. 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


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    ((((((Donna))))))

    Your meal sounds delicious and is exactly the meal my mom and elders served every Easter. I did too, for many years, until I became a vegetarian. I hope that Nicholas brightened up so that he could enjoy those tasty morsels. But ice cream and chocolate sauce sounds delightful on its own.

    I intended to prepare: Avocado/tomato salad; green beans almondine; steamed cauliflower/broccoli with cheese sauce; potato salad (Jim isn't a fan of scalloped); Quorn roast; pomegranate coconut cream (like ice cream, but made with coconut milk) with fresh blueberries; brownies.

    We'll be having: canned soup and a sandwich!

    We got Jon out of bed to his recliner. We then worked on getting our printer connected to our computer (this is a long saga ... the new computer and printer don't like each other). That was futile. Put Jon back in bed. Jim went to bed. Two hours later, I pulled Jon up in bed (in the rental bed), and as I was lowering the foot of the bed, the motor under the bed fell off onto the floor, and the buttons to work the bed no longer worked!

    Jon's head was flat, and his feet were elevated. Not safe or comfortable.

    I couldn't figure out what to do, so after 10 minutes of trying, I woke Jim. He couldn't get it to work. Jim manually lifted the head of the bed, and propped it up with one of Jon's cases of formula!

    So we called the company and asked for a service tech. He arrived about an hour later. Nice young man. He knew what was wrong and said it was a common issue with these rental beds. Overuse. He explained that the motor doesn't have a safe place to sit in the bed frame, so it's at risk every time the bed is lowered. We just got unlucky.

    He fixed it! Prayers answered! He and Jim were laying on their backs on the floor under Jon's bed trying to secure the motor to the underside of the frame. Absolutely ridiculous!

    I sent Jim back to bed, and it's too late to cook now, and frankly, I have no energy to do so.

    Because we are always home, sometimes it's difficult to keep track of which day of the week it is. But we know one thing for sure: if we're going to have a crisis, it will be on a weekend and/or on a holiday. We like to keep things challenging.

    Happy Easter! Much love coming your way from our family ~

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Ohhhhh brother. You are so right - it always happens on weekends, especially LONG weekends! I cannot believe your awful luck with your beds. I mean, for Jon, having a working bed is like having oxygen. I'm glad at least that the young man came to fix it. That's a blessing. Wow. Anyway, your Easter meal sounds so delicious! Sounds like a lot of work though and being a not bad home cook, I know how much TIME it takes to prepare! Well, when Nick was small and was in the hospital all the time, we would inevitably miss his or Natalie's birthday. So we would wait till a good day and have a big 'unbirthday' party. So, perhaps when things settle down in your house, you could have an 'unEaster' dinner. I send you love my friend, Donna x
    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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    ((((((Donna)))))))

    How was your Easter dinner, and was Nicholas able to enjoy it? And how is your weather? Is it cold or Spring-ish?

    What is this about you being a "not bad home cook?" I've seen your recipes and the photos of your efforts in the kitchen. I'd venture to say that you are a fabulous cook!

    The "UnBirthday." Good plan! In 2004, Jon was in the hospital with pneumonia and his broken hip. We were home mid January 2005. He had bed sores (as usual from the hospital), so we left up our tree and decorations until APRIL, when he was able to get in his chair and open presents next to the tree!! One must be flexible, when caring for a loved one with special needs or illness, as you, and we all, well know.

    I think I'm going to attack the Easter meal tonight to surprise Jim when he gets up. I'll see how far I get with chopping veggies, before I need to rest! We may only have half of the meal I'd planned! In fact, it might end up just being the pomegranate and blueberries!

    The very good news is that we have a working printer now!!! HOORAY!!!! Now I can print out the tax forms and get to work on that fun chore. What a relief this is to have a printer! Over a year we have been printer-less! No copy, no scanner, no fax, no printer. That sure made life inconvenient. Yippee! I get to do the taxes!

    As long as the bed doesn't konk out, I think we'll call it a good day here!

    Sending love and healing energy to you and your beautiful family ~

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 04-01-2013 at 06:24 PM.
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Woo hoo, yippee for a printer! It's amazing how much we depend on technology and it really is a blessing when it all WORKS!!! Our Easter dinner was a fun day of chatting in the kitchen, Nicholas 'helping' with making a chocolate cake (he's the taste tester of all the ingredients). We had a lovely time. When it came to dinner, he ate one bite of ham and one bite of cake, but that was OK. We had fun. We skyped with my Mom and my sister and her family in Montreal so it felt like we were all together. Then last night, Nick came home for dinner again - a friend of his from elementary school is a dear girl who is now doing her Masters in disability studies and she came with her parents who are wonderful people. Nick got so excited at the dinner that he was just about jumping out of his chair and he had to excuse himself to lie down. But Eleni (his friend) went to sit with him in his room and she held his hand and they chatted and laughed about old times. So it was great. Today I went with Nick to a communication clinic to see about a switch controlled speech device, but I think in the end we'll stick with the book and the helper reading the scans. Nick doesn't like the switch access - he is too impatient with the mis-hits and the effort of it. We go again for another try next week, though, so never say never. Anyway, it's a busy time and so far no seizures during the day with the keppra. Yay! Sending love to you and I think Christmas in April sounds divine. Might as well have it here, it's freezing!!!! 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


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    ((((((Donna))))))

    What great news that Nick hasn't had any seizures since starting Keppra! I will pray that it continues to work its magic for him, and he remains seizure-free.

    A joyful Easter celebration (technology bringing the family all together is very cool) followed by an evening with Eleni and her parents. Sounds wonderful. How sweet that Eleni sat with Nick, and held his hand (awww ... ). Lovely.

    Maybe with a bit more practice on the switch, Nick will get the hang of it, and might end up preferring it. All you can do is try, right?

    Have you started physio and massage yet?

    Hope that the week is going well for all of you. As always, sending healing prayers your way.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Hi Rose,
    I haven't started physio or massage yet, but I hope I'll have time tomorrow to make appointments. Nick went to a hockey game with Jim tonight and it was fun but the message was not passed on to his night nurse who was upset. Gosh, communication amongst staff is difficult! Jim had email multiple times to permanent staff (one of whom is on his honeymoon now and away) that he would be taking Nick out tonight. Communication amongst staff and family is always the hardest hurdle to good care eh?! Anyway, the week is going well and no seizures, yay! Sending lots of love you and of course your wonderful Jon and Jim 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


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