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Thread: CN Central: NOVEMBER UPDATES

  1. #11
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    ((((((Mary Grace & Kathleen)))))) ~

    Great news that all went well with Kathleen's cast removal! And all that you accomplished in 3 hours is amazing. My respect for Shriner's has definitely increased.

    No doubt, Kathleen will get the gist of walking with that cast. I'm sure it takes some time to have the confidence to bear weight again, as I've been there on a much smaller scale with ankle and knee injuries. With the PT, Kathleen will be walking again in no time.

    How great that you are willing to mentor other parents about surgery. It's such a frightening proposition, filled with fears and trepidation, so I'm sure that your sage advice and extensive experience will be enlightening and comforting to parents facing their child's surgery. Awesome!

    I'm with you on preferring milder weather. We've been enjoying cooler temperatures these past few days, and today, we are graced with sea breezes. Such a relief after the super hot wave we had for so long.

    Thanks for your prayers for Jon. MOM worked, and he produced a goodly amount, but he's once again slowed down. He's a bit tired these past few days, which convinces us that we need to have his seizure med levels checked. So his nurse will draw blood on Monday.

    Today, I need to change my signature, as Jon is officially 46! Jim brought home balloon bouquets for Jon and for Michael yesterday. And he got some fun musical cards for Jon, which really amused Jon this morning. Thankfully, the order of DVDs (several movies and a concert) finally arrived today! I was fretting that the US mail, according to their tracking on line, had been taking it all over California for the past few days, completely bypassing our County! He's watching San Andreas now. Not sure if that's a good idea, on second thought, since we do live in Earthquake Country. But he likes these disaster/adventure movies (Independence Day, Armageddon, etc.). For me, it's just that those movies are fantasies, and this movie is about something that could actually happen. (Note: I took some time away from writing this to watch it with Jon. YIKES! It's scary! Well done! And scary! Not fazing Jon at all, but my palms are sweating! )

    Back to celebrating Jon's big day ~ next up is our fabulous Buckeyes football game. Then another new movie for Jon. A few more cards. A gift from our neighbor (the young man, who helps us/Jim, and is Jon's "bud") ~ Sandy Koufax bobble head, which is not easy to find these days. Then the concert DVD for Jon. Then lights out. We don't do a cake any more, because he can't eat it. But we do sing Happy Birthday many times morning to night for him!

    Healing prayers for Kathleen! Please keep us apprised of her progress!

    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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    Oh Rose, That sounds like a perfectly lovely Birthday!!! What a wonderful way to celebrate. I have not seen San Andreas I think I may have to... Not quite as scary for us in upstate NY. We love the musical birthday cards Kathleen has several and she really gets a lot of use out of them. Probably more than most people. Please give Jon a great big Birthday HUG from Kathleen and I. I will continue the prayers for Jon.
    We had a "Cast off" party with some friends and family today. (even though it's not completely gone it's a great accomplishment and big relief.) One of my good friends helped me get her walking a bit and she did great. Still wobbly but she'll get there. Her skin is a little dry but not nearly as bad as I thought it would be. I get lotion on it a couple times while she's sleeping.
    Big Happy Birthday JON!!!
    Mary Grace

  3. #13
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    WOW, Rose, I can't believe Jon is 46! I'm shaking my head - I just don't think of him being 'middle aged' at all. But then again, Nick is 27 now and I still think of him as my baby lol. All is well with us tonight we all went to my sister in laws and brother in law's for a football game and they had a projector set up to watch it on the wall (it was connected to a live stream on the computer - all very cool and technical). football.jpg You can't see Nick, only the back of his chair, but he had a fantastic time - he loved it! That's my brother in law on the left and Jim on the right. My sister in law Cathie is in the background. This week I went to see my Mom too - she's getting older, but we had a lovely day. The weather has been amazing for November! Warm and sunny so we got Mom out for a walk and that boosted her spirits. She doesn't get out much anymore. Not much else to report around here - Nick is rock solid stable (touch wood!) these days, so Jim and I are going to the cottage tomorrow to close it for the winter. I've been battling a sore neck/shoulder for the last weeks and next week, I'm going to try a combination of chiro and massage. So far, just the massage hasn't been working. It's all the lifting over the years. Occupational hazard! I send love to all my dear friends here on CN2 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. #14
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    ((((((Tamie)))))) ~

    I'm so glad to hear that Tyler is continuing to improve. I'll pray that your grandsons didn't bring any germies to your home tonight. How can you manage two grandsons and Tyler?!?! You're just amazing, Tamie.

    Wow, I know what you mean about shrinking families and smaller holiday gatherings. We simply don't entertain anymore, because we don't have the energy or the time. And we can't take Jon anywhere for any length of time, with all of his needs now. And there's flu season, so we have to become shut-ins essentially. But we do our best to celebrate every occasion, to decorate, and to have fun.

    Thank you for asking about Jim. He still struggles with pain every day, and if he overdoes it, he feels it more. I'm trying to convince him to do easy exercises to get him back into shape. A friend gave us a DVD: Tai Chi for Arthritis. We need to try it, but he's difficult to persuade sometimes. I walk 1 to 2 miles every morning around our neighborhood, even though I have severe pain in my left hip, and my knee and ankle on that side aren't too clever either. But if I don't walk, I feel worse. I strongly believe that if we don't move, pretty soon we can't move. That's why I have exercised most of my life. (Also, my family history includes morbid obesity and diabetes, so I exercise to avoid that outcome for me.)

    Has your husband had a chance to use his A-pap yet? If so, I hope it's helping him to sleep more soundly. If not, then I hope he is able to start using it very soon.

    Thanks for reminding to take care of myself ~ back at you. We ain't Spring Chickens anymore!

    Continuing healing and strengthening prayers on their way ~ May Tyler kick all these infections and not pick up any more.

    Please keep checking in with us on Tyler's progress ~

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

    I'm so sorry that your math professor had a stroke, and I am sending up a healing prayer for him right now.

    There are several potential causes for strokes, including an embolism, a rupture, leaking in an artery. And just as many causes for those things to occur, such as obesity, high blood pressure, etc. Here's a link to Mayo Clinic with information about strokes:

    http://www.mayoclinic.org/diseases-c...s/dxc-20117265

    What you can do for him ~

    Send him a get well card. Send him one every week. Let him know that you're thinking of and praying for his healing.

    Send him a small plant. Something to remind him that you are in his corner.

    Send him a CD of beautiful music.

    Visit him in the hospital or rehab facility. Just a short visit to lift his spirits.

    If he can't read or comprehend your cards and gifts, then his family will receive them for him and share them with him. It will mean a lot to them to know that his student (you) are concerned for his well being and are reaching out to help him recover.

    If you have a means of contacting his family (wife, children, etc.), then offer your help to them. Ask them what you can do for them.

    There is no such thing as a small gesture of love. And love is powerful and full of healing energy. So, just share your love for your teacher, and express it in any way you can imagine.

    And you've already done that by asking us for prayers on his behalf.

    May he recover fully and return to his normal daily routines and life.

    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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  7. #16
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    ((((((Mary Grace)))))) ~

    A "Cast Off" party! I love it! What a fantastic idea! Kathleen is a party girl, so I can imagine that she had the best time of anyone there! And how great that a friend helped you get Kathleen on her feet today. You have wonderful friends. I absolutely know that Kathleen will be cruising soon. She's a very determined young lady.

    Did you save the old cast for the autographs? Just wondering, since I've never had a cast, nor have my boys, and I'd likely want to save it. I'm sentimental that way.

    For Kathleen's dry skin, I highly recommend The Body Shop Hemp Cream:

    http://www.thebodyshop-usa.com/men-p...protector.aspx

    I know it says it's for Men, but we use it for all of us. And we don't just use it for our hands. We put it on Jon's weird rash, and it cleared it up. It's good stuff. We've tried many things for dry skin and rashes, and this works best.

    For Jon's daily moisturizer, we use 100% Pure Honey Almond Body Lotion:

    http://www.100percentpure.com/collec...ing-body-cream

    Their products are pricey, because they're organic, and they don't use many of the chemicals other organic products use. But, once you buy something on line from them, they inundate you with email sales. I never pay full price for their products. Another thing ~ a little goes a long way with their products. You use less to achieve the desired results, so the products last longer. Also, 100% Pure is a woman owned, California-based company, and their products are made in the USA. I'm supporting three causes there! Speaking of which, they also have promotions to support very worthy causes.

    On my walk the other morning, I encountered a neighbor, who I hadn't seen for a few months. He said, "You look younger!" I just laughed, but he was serious. When I came home and told Jim, he said that since I've been using 100% Pure products on my face, I do look younger! Imagine that!

    Jon was not into the football game, so he got his second DVD present: Pixels. A different kind of disaster movie! He's watching it for a second time, so it went over well with him, and that's always a good thing.

    I'm anxious to give him the concert DVD, which is Steve Martin playing banjo with his band in a live venue. I want to watch it! And I'm sure that Jon will get a kick out of it. Then at bedtime, Jon will listen to the new Don Henley CD, Cass County. We watched Don Henley's PBS Austin City Limits special, which Jon thoroughly enjoyed, and we knew we had to have that CD in Jon's collection. He's a big Eagles fan.

    It has been a good day for Jon, which is a good day for us. And our Buckeyes won, which means we are still #1 with the most undefeated games among any other college team.

    It has been a very very good day.

    Many prayers on their way for Kathleen's full recovery and walking and dancing very soon!

    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.

  8. #17
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    ((((((Donna)))))) ~

    Even through the back of Nick's chair, I can see that he is having a wonderful time. He's surrounded by his favorite people, watching football, (maybe had a sip of beer?), so he's certainly having a good time! And "rock solid stable" is so fantastic! May it continue to be so for him!

    I'm glad you were able to take your mum out for a walk, and that she felt better for doing that. Lovely weather just enhances all of our systems, doesn't it?

    I'm so sorry that your neck and shoulders are causing you so much pain, and I am praying that the combination of chiro and massage will provide you with relief. Have you ever tried acupuncture? Can you find relief with a heating pad (my best friend in life, my heating pad) or with topical applications like Aspercreme or Tiger Balm patches?

    Occupational Hazards ~

    Jim's shoulders, arms and hands are his most vulnerable/painful areas, like you. My pain is focused in my back and left hip. I carried my boys on my left hip when they were toddlers/children. My guess is that we're all experiencing these pains from years of lifting and other strenuous activities that were out of the realm of normal for our bodies.

    Jim was a scaffolder for most of his young life, lifting steel bars on his shoulders, while climbing on the balls of his feet up sky high ladders, repairing old structures in England. Now, as a senior, he is paying for that abuse to his body. He wasn't a body builder, but he was muscle bound in his youth. Now, he has no muscles, and he is in pain all of the time.

    Yes, it is difficult to fathom that Jon is 46. I observed today that he is only 4 years away from being 50! As he grows older, we grow older. And this is frightening to me. Jim and I are already coping with our own aging bodies, and we meet the challenges every day to care for Jon. But common sense tells us that we aren't getting younger, and we aren't going to suddenly have younger bodies.

    As you still think of Nick as your baby boy, we, in many ways, also see Jon as our baby boy. Completely dependent for all of his needs, and requiring advocacy, which he's unable to provide for himself. With every birthday, we rejoice and give thanks, but we also stop to consider reality and recognize that we aren't prepared for the possibility of our becoming incapable of providing his care, as we all age.

    It is quite sobering. Because, as I still think of Jon, a middle aged man, as my baby boy, I also still sometimes think of myself as his young Mother. Reconciling those perceptions can be a bit difficult sometimes. I can look in the mirror and see that I am old, but in my heart, mind, and spirit, I feel like I should still be able to do all that I could 30 or more years ago. It's ridiculous, because I know that I can't, but I don't want to let go of that feeling, because I have to be here for Jon to see him through his journey. The only way that I can think of to do that is to stay young.

    Ah, well, it is evening tide on Jon's 46th birthday, and I am waxing philosophical. Please forgive me.

    Please take good care of yourself, Donna, and I pray that you will find relief from your pain very soon.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 11-07-2015 at 09:31 PM.
    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.

  9. #18
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    I'm so sorry that your math professor had a stroke, and I am sending up a healing prayer for him right now.

    There are several potential causes for strokes, including an embolism, a rupture, leaking in an artery. And just as many causes for those things to occur, such as obesity, high blood pressure, etc. Here's a link to Mayo Clinic with information about strokes:

    http://www.mayoclinic.org/diseases-c...s/dxc-20117265

    What you can do for him ~

    Send him a get well card. Send him one every week. Let him know that you're thinking of and praying for his healing.

    Send him a small plant. Something to remind him that you are in his corner.

    Send him a CD of beautiful music.

    Visit him in the hospital or rehab facility. Just a short visit to lift his spirits.

    If he can't read or comprehend your cards and gifts, then his family will receive them for him and share them with him. It will mean a lot to them to know that his student (you) are concerned for his well being and are reaching out to help him recover.

    If you have a means of contacting his family (wife, children, etc.), then offer your help to them. Ask them what you can do for them.

    There is no such thing as a small gesture of love. And love is powerful and full of healing energy. So, just share your love for your teacher, and express it in any way you can imagine.

    And you've already done that by asking us for prayers on his behalf.

    May he recover fully and return to his normal daily routines and life.

    Love & Light,

    Rose
    Hi Rose, first of all, HAPPY BELATED BIRTHDAY TO JON!!! That sounds like an awesome birthday! I love getting movies as gifts. He's so lucky! THANK YOU SO MUCH for your advice about my teacher!!! Your prayers are definitely working! I have been sending him little messages whenever I can telling him how much I care for him and he replied back saying he is doing well. He has a good perspective and attitude about the whole thing. He knows he is blessed to just be alive. My words do seem to provide him with comfort. He asked me to do him the favor of telling the other students about his stroke because he had issues reaching them. I was honored when he asked for my help. Naturally, the rest of the class was terrified and we have a plan to make him something special i.e a gift together. We all know how close he came to dying. We have had to deal with the fact that we could have lost him forever so emotions have been flying all week as we all try to process everything. I don't think we realized how much we loved him as a friend or how we took him for granted. We didn't realize how we needed him. I have personally had to deal with mixed emotions about how people can become disabled instantly. My experience with brain damage is a night and day difference from what my teacher has been through. It is very sobering. I never thought I would be a witness to a perfectly healthy individual becoming disabled/brain damaged…it's very shocking...though I still don't know the full extent of the injury to our teacher's brain. He hasn't been able to give me many details and I do not want to pry. I know my teacher wishes to return to class ASAP but we have been telling him to slow down. One of my classmates is afraid that if he does push himself too hard, too fast it could kill him. She was like "THIS ISN'T FUNNY! HE COULD HAVE DIED!!!" I know where she is coming from.
    Do you guys think he might be in pain? Can you please pray that he continues to heal, is not scared and that he is not in pain??! Thanks! You are all the best!
    Last edited by funnylegs4; 11-11-2015 at 08:32 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #19
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    ((((((funnylegs4)))))) ~

    Your teacher's improvement is very good news, and I'm sure that your encouragement and contact has been beneficial to him in his recovery. Do stay connected with him, as he clearly appreciates your support and concern.

    The news of his stroke is certainly shocking for you and your classmates, and any efforts you can extend to help him will make him and all of you feel better.

    One day he was fine. The next day he had a stroke.

    That is shocking. And it prompts us to recognize that we are all vulnerable, and we never know what tomorrow will bring. So we need to live for today, and turn today into the best day possible.

    Your teacher's desire to return to work is probably a very typical reaction. No one wants to be incapacitated, and everyone probably wants to return to their former life, when things were "normal." I think that would apply to anyone under any circumstance, where her/his "normal" has been altered, but it would be particularly true for someone, who experienced a severe neurological event, like a stroke.

    He, and you and your classmates, need to be patient, and to allow him time to recover, while understanding that he wants to be back in the classroom, where he was before this stroke happened. Just tell him that you look forward to his return, when he is fully recovered.

    I'm sure that he will love the gift you are all creating for him. Your support will surely contribute to his healing.

    Your teacher is teaching you more now than he ever did in the classroom. He's teaching you about Life.

    Healing prayers on their way for your teacher, and for you and your classmates ~

    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.

  11. #20
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    Funnylegs, I'm so sorry to hear of your teachers stroke. Kathleen's strokes were 13 years ago and the moment of each stroke is still so very clear in my mind. Rose has given you some really great advice. There's a great book that I read a few years ago it really explains a stroke and the recovery. It's called written by a brain scientist Jill Bolte Taylor, A Stroke of Insight. She also has a video on Ted Talks ( I believe you can google it). I'm not sure what the stroke affected for your teacher but a lot of the effects can be invisible to others. If you are aware of this it can be very helpful. Things like exhaution (like we can't even imagine), Difficulty finding the right words, memory (short an/or long term). Also the fear of another stroke. Sometimes just being there and listening is a big help even after it appears he's doing well. Do you know how he was affected by the stroke? This could help me to give you some ideas of what his needs might be. Music is very helpful to Kathleen. Staying positive and determined is very important. Depression can set in very easy. Let me know if you have any specific questions I can help you with. Do they have any idea what caused his strokes. Kathleen's were caused by moyamoya disease. I belong to a facebook stroke survivors group, I'm sure there are more than one but that can be helpful if you can suggest one to him. I think we all know how important it is to talk with others in the same position. You are a great friend to him and I'm sure whatever you do will be helpful. Keep us posted...
    Mary Grace

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