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Thread: CN Central: September Updates

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    Post CN Central: September Updates

    ((((((HUGS TO ALL)))))) ~

    Goodbye Summer ~ Fall is on its way!

    Please check in with your updates here ~

    Your favorite chaise awaits you



    The gentle sea breeze is wafting over you

    And the smoothies are on their way



    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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    Great idea for September updates! September is my favorite month. In fact we were married September 1st 31 years ago. We may actually go out to dinner this weekend. I LOVE fall in upstate NY. the best thing is the apples. We go through pound and pounds of apples. Apple crisp, apple pie, apple cobbler, apple sauce, and apple coffee cake.
    Kathleen is doing quite well. PT has been awesome, she even uses 2 1/2 lb weights now with her leg exercises. We will continue 2 times a week in addition to her school PT. Next week is the first day of school. It's also our pre-op appointment at Shriner's. I didn't know this before but we will be able to travel to Shriner's hospital the night before Kathleen's surgery and stay in a "family room" . They have 5 hotel like rooms for this purpose. Sleeps mom dad and patient. This is so we don't have to travel the morning of surgery. It would be pretty difficult to drive out in the morning since she can't eat or drink before surgery. Rich is also set up for a Ronald McDonald room to stay in since only I can sleep in her room after surgery. Wonderful things to not have to worry about!
    My son Patrick got a promotion last week! I'm so proud of him. He is now a PM (portfolio manager) which means he has his own financial accounts to manage. He got a very big raise with the promotion. My aughter Kelly has some interviews lined up for attorney positions in other state departments. One that she really wants is with OPWDD (office for people with developmental disabilities). She interned there while in law school.
    So all is pretty good here! Anxious for surgery it's coming fast. Praying we get good results and she isn't bothered too much by the non-weight bearing 6 weeks.
    Mary Grace

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    Hi Everyone,
    I saw your note Rose that Jon is doing much better, thank goodness! Mary Grace, I'll be thinking of you and Kathleen as her surgery draws near. Good luck! I love the autumn too. We have two apple trees in our garden and we just finished picking them all - there are TONS!! We delivered twice to the food bank and twice to Rotary where Nick lives. And we'll give some to family and I'll bake bake bake. Today I made preserves of mustard pickle with cucumber and cauliflower and also peach chutney. It was a lot of work, but it's only one day a year :) so I can't complain! Nick is doing fine these days - he has just two little issues we're seeing the GP about on Friday - an irritation like a stye in eye that comes and goes plus a very red stoma that won't heal. I think his eyelash might be ingrown and I think we need a swab of his stoma. All our usual magic tricks aren't working. He might have yeast or pseudamonus (sp?). Anyway, we'll get it sorted. He's still flying high after his birthday celebrations last weekend. He turned 27 and a good time was had by all at our local English pub. Here's a photo of my 27 year old at the pub! Nickbday15.jpgNickbday15.jpg
    Attached Images Attached Images
    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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    Hi everybody, Happy 27th birthday to Nick!

    Well on my end I went on a little 3 day trip nearby and got to walk around a beautiful butterfly garden there. While on the trip I met a mother of a disabled daughter who liked my films. During the trip I read this fascinating book by Kevin Sorbo(A good read regardless of whether you like Sorbo or not) http://www.truestrengthbook.com/index.html about how he adjusted after having 3 strokes. I saw some similarities between my CP and some of his balance issues after the strokes but his disability is more severe despite being invisible. I'm also making some progress with that social issue I had but it's slow going.
    Last edited by funnylegs4; 09-02-2015 at 05:30 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Mary Grace)))))) ~

    HAPPY ANNIVERSARY!!

    I hope that you and your husband have a lovely evening out this weekend. Treat yourselves to something special.

    I have seen upstate New York in the Fall, and it is breathtaking. And apples ~ so many delicious ways to enjoy them, as you obviously do! I can smell them cooking, with a scent of cinnamon. Mmmmmmm ...

    Great news that Kathleen is doing well, and working on her PT diligently. And how fantastic that you have a family room so you can stay with her before her surgery. I'm so impressed with Shriner's from your descriptions; they sound like a wonderful organization.

    Congratulations to Patrick! And positive energy and prayers that Kelly lands a position with OPWDD.

    Prayers that all goes well with Kathleen's pre-op appointment.

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

    What a great photo of your handsome treasure! Wow, Nick has sure matured! His expression of joy warms my heart. I'm so glad that he had a fun birthday.

    I wonder whether there is any correlation between Nick's eye and his stoma. Like a fungal infection. Could it be conjunctivitis in his eye? Michael used to get that a lot. We soaked his eye with a warm wet washcloth 3 x day and applied an ointment to his eyelid.

    Didn't Nick have a problem with his stoma sometime last year or the year before? I vaguely remember this ... you were searching for a different button or ... it's quite possible that I'm wrong. I barely remember my name these days.

    You and Mary Grace are causing me to salivate profusely! I think I gained 5 lbs just reading both of your delectable concoctions! Wish I could have been parked in your kitchens (and helping you, of course )!

    Please let us know what Nick's GP says about the stoma and eye issues. Healing prayers that they are nothing concerning and easy to treat.

    ABOUT JON ~

    He continues to do well ~ no seizures, excellent vitals, and his normal self. Stress level here has gone down several notches. We just keep giving prayers of thanks.

    Jim and I have just about finished the restaurant meals, and he visited the grocery yesterday, so we can start cooking again. (Yippee!)

    Oh ... I forgot to mention in my last post on Jon's thread ... As Jon's nurse was readying to stick Jon the first time, the specimen vial began to roll off of Jon's bed. I reached across the bed to catch it, just as his nurse turned to catch it, and she jabbed me with the needle on the top of my right index finger! The needle was still sterile; it stung a bit, although I was wearing gloves. I turned to Jon and said, "Mom took one for you, Buddy!"

    Tomorrow, our street will be slurry sealed. We have a huge divot in front of our driveway, probably from the delivery trucks parking there practically every day of the year! We hope that they repair that properly. Slurry seal is messy and smelly. Probably not good for the environment. But the good news is that it will only be 78 degrees tomorrow. A big relief from our recent heat wave.

    More smoothies to entice more Updates ~



    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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    Good luck with the surgery, Mary Grace!

    Glad Nick had a happy birthday, Donna!

    Funnylegs - book looks interesting. Thanks for the recommendation!

    Rose, I was following your last thread but forgot to comment. How scary for you all re seizures. I hope things calm down soon!

    Well, I am going through quite the transition to say the least. In 13 days, I will leave the city I have lived in for the past 15 years for the capital, to start my new job. My title is Human Rights Specialist, specifically focused on disability issues. I will be working with the government and other groups to advocate on disability related issues. How perfect, right?! I still can't believe I got it. This is the ideal start to my career, the salary is amazing by graduate standards, and the people seem so, so supportive and accommodating, and genuinely excited to have me. Accommodation has also worked out surprisingly perfectly - I saw an acquaintance on Facebook advertise she had a spare room in her apartment coming up for rent. She uses a motor scooter so it's all fairly accessible, the rent is really reasonable, and it is within 'walking distance' of work.

    I am really sad about leaving all the people I know here. I have such amazing friends. And I am apprehensive about having to meet new people. But this really is a once in a lifetime opportunity and the start to my career!!!
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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

    How relaxing and lovely to spend time in a butterfly garden. I hope you took pictures. And how wonderful to meet a fan of your films there! I can imagine that Kevin Sorbo's book is very compelling. Recovering from a stroke is quite a difficult journey. Be patient with your friend, and allow some time for healing. I pray that it all works out well for you.

    ((((((Erin)))))) ~

    How exciting to begin your career with the ideal position! It's all up from here! And, you have a new roommate and a great place to live. Everything is going your way now, as it should be! I'm so happy for you!

    It is always difficult to leave one's home, the friends, the place where we feel most comfortable and acclimated. Thanks to technology, you will be able to stay in touch with all of your friends, and you'll probably have opportunities to return to visit, or they can visit you. And, while this is an ending, it is also a beginning. A new life, the one you have been working diligently toward all of these years. New people, new challenges, new environment ~ an adventure awaits you.

    I'm looking forward to hearing all about it too ~ Wishing you all of the best on your journey ~

    OUR UPDATE

    Jon continues to be well. Vitals are good. No seizures.

    The weather is perfect. Only 78 degrees today, with luscious sea breezes. (We are about 20 miles inland, and we're in direct line for those breezes. One of the best parts of living here.)

    The lovely evenings are bringing our neighbors out for patio parties; last night the neighbors on the right partied until 11 p.m. Tonight, the neighbors on the left sound like they might go that long as well. The longer they last, the louder the chatter and laughter. (Glug, glug, glug!) On the left side, it's, "Oh, ha ha ha! That's SO funny!" and on the right side, it's, "Dude, we're outta beer!"

    And Jim is endeavoring to sleep through all of this partying. His solution: the radio. He's now turning on a radio when he goes to bed to drown out other noise. It seems to be working.

    No slurry sealing of our streets today. As per usual, our homeowner's management company is incompetent. No checking with utility companies for when they might be doing work in the neighborhood. And guess what? The electric company is still upgrading our underground equipment. Wouldn't it make sense to contact all utility companies first, before scheduling slurry sealing?

    When I called our HOA manager today, I also asked her about trash pick up. If we were slurry sealed today, trash pick up is tomorrow, which is probably not a good idea. A HEAVY trash truck, loaded with trash, turning and backing up on fresh asphalt? Oh, she hadn't thought of that either!

    Big Sigh.

    Let's have some smoothies ~



    And celebrate tomorrow!

    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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    CPchick, You're welcome! I know how hard it is to leave friends too but I second what Rose said. I have 4 long distance friendships going via Skype and email. We are all very close and have been for years. The friendships haven't changed at all since I moved. Congrats once again on the job! A piece of advice in regards to accommodations that I have learned in my own life is be very careful not to assume to much and choose your battles carefully.

    Rose, Thanks! The book was one of the best books I have read in a very long time! Sorbo has a great sense of humor and describes things very well. I could see his symptoms and recovery were very intense and difficult indeed. It made me grateful that my symptoms are not nearly as severe as what he went through. Thanks for the advice! My friend is being pretty nice about the whole thing so far(we have emailed) so I am relieved, but the person who had the outburst itself is still being a huge A**hole. The person who had the outburst will not apologize and acused a random stranger of another nonsense thing so I know it is this person who has the problem, NOT my friend. I hate when people lie and use it as an excuse for terrible behavior. Glad Jon is not having seizures. The radio is a clever idea. Sometimes I use youtube to drown things out too LOL.
    Last edited by funnylegs4; 09-04-2015 at 04:06 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    CPchick, Thanks surgery is coming fast! We have pre-op tomorrow.
    Rose I hope Jon had a good weekend!
    We had a wonderful weekend outlet shopping, picinic with friends and swimming (had to because it was 90 everyday). Kathleen went back to school today she was pretty excited. We took pictures of vacation at the beach and everything we did over the summer so she has books to show off and talk about what we did to keep busy all summer.
    Mary Grace

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    ((((((Mary Grace)))))) ~

    You did have a fun summer! That's great! And lots of photos of the memories you created to last forever. I'm sure that Kathleen loved talking about her summer vacation at school. I hope she had a fabulous day today!

    I'll be thinking of you tomorrow as you go through your pre-op appointments. May it all go smoothly. Please let us know how it turns out.

    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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