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Thread: CN Central: APRIL UPDATES!

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    Smile CN Central: APRIL UPDATES!


    ((((((Hugs To All)))))) ~

    Five days into the month already, and I'm late to the party!

    Very busy around here recently, a trend, which will continue for the remainder of April, and well into May.

    Driver's side window on our van broke, went in for servicing yesterday morning, returned home this afternoon.

    Homeowner's Association sent us a letter that we have to repair/replace our damaged garage door by 4/23, so we had an estimate yesterday to replace our door, which is 26 years old. That will likely occur next week.

    Our garage is crammed full of stuff, which has to be removed so that the workers can access the tracks and motor (which we're also replacing). A huge task, albeit very necessary, but the owner offered us an extra worker for $80, who will move the heavy stuff.

    We will get a bin from our waste disposal server on our driveway, into which much of the unusable stuff will go ~ like Jon's ancient manual/hand crank hospital bed, circa 1999, and horrible mattress, and area rugs, on which our dog lost her bladder (she passed in 2011), and so much more that we never intended to keep, but didn't have time or energy to dispose of properly. Big job, but very needed and long overdue.

    I'm trying to order the lift straps for Jon's lift, so we can pull him up and turn him in bed. Yesterday, I talked to 7 different people, one of them I spoke to 3 times, each one referring me to the next person. The last person referred me to a roaming "mobility specialist," whom I will call tomorrow. It's pathetic. This is Hill-Rom, a giant corporation. Disorganized, poorly run, and very poorly represented by the 7 people I contacted yesterday. Right hand has no clue what the left hand is doing.

    Today, Jon's former nurse and new nurse visited to change Jon's trache. Former nurse trained new nurse, who did a great job. New nurse is young and very pretty. Jon noticed her today. Flirted. I think we'll be all right with the transition now.

    Jon's lymphedema is flaring, and our efforts to control/reduce it aren't working. His left foot has a gnarly rash on top, as his skin is so dry. We're using all of our natural moisturizers, honey and almond, and hemp. The strap on the foot poseys are causing friction. The compression stockings, while helping to eliminate fluid, are irritating the rash. The massage doesn't seem to be moving the fluid. We may need to call Jon's PT.

    The good news is that he's no longer constipated and is producing bowel on his own every day. YAY!

    Jon's next cath change will be around 4/21.

    Today, I called his GI doc for his home visit to change Jon's G Tube. He orders a special tube for Jon, so that visit may be this or next week (when we're in the midst of the garage overhaul).

    We're hoping to schedule Jim's cataract surgery for 4/28. He will need to see his PCP for vitals (ridiculous) 7-10 days prior to surgery, and will have an appt. for eye measurement, the surgery, next day follow up, and a follow up with his regular eye doc on Monday 5/2. Five appointments!

    We need to get those lift straps before he has surgery! Grrr ...

    Oh yeah. Taxes. Due. Major stress for moi.

    I woke up this morning, after about 4 hours of sleep, with swollen eyes, and My Scarlet Stress Rash covering my face and torso. As I looked at myself in the mirror, I said "Hello. I was wondering when you were going to show up." It's nothing new ~ been happening to me for well over a decade.

    It is a lot of stuff going on simultaneously, but it's all good, in that we are renewing and refurbishing. And since we try to hibernate during cold/flu season, we have to expect that everything will happen in a short time frame.

    If you're reading this, then thank you for your patience, and now, please post your update!



    And then join me here,



    and let's slurp back a large quantity of these:



    Your Cabana Boy is waiting, palm frond in hand!

    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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    Always so much going on in our families Rose. My car hasn't been in our garage in 30+years. Just a large storage container full of nothing too important, yet we keep it full. Nuts. Hope all goes well with Jim and Jon. Nothing like a little stress to keep us on our feet.

    Spent 10 days in South Carolina/Tennessee. Rented a cabin again this year. It was haunted (truthfully, someone was in that cabin with us and not invited or seen). Not exactly the peaceful vacation the girls, grandkids and I were hoping for. Three of the children became ill. Spent time in Urgent Care and the ER. Hmmm, maybe peace next year.

    Tyler is about the same. Still having pain issues daily. It is really hard to watch and listen to. Our world is definitely shrinking to the four walls of our house and our yard. Have an appointment with Urology on the 20th to see if they can offer us any help. Jerry had a nurse pretty much every day I was gone, so at least he got a break most days. Nights were another story, but then, we are used to getting 4 hours of sleep a night.

    Started planting my vegetable garden yesterday with the help of our youngest grandson. Indigo Blue tomatoes, yum, yellow squash, green beans, zucchini are all in. Bananas, peaches, apples, oranges, lemons, plums, apricots, pomegranates, avocados, limes, guavas, and cherry tree are all in bloom or fruiting. Still have more veggies to plant, but a good start for a great harvest. I love an edible garden.

    Happy Spring to all!
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie)))))) ~

    I'm so very sorry that Tyler is still suffering. Is the UTI cleared up? Will you be discussing the supra pubic catheter at the 4/20 urology visit? It seems that something of that nature is necessary to stop this pain. You have a diagnosis now, so I pray that all doctors are on board and will help Tyler.

    If anyone deserved a peaceful and relaxing 10 day getaway, it's you. But you end up in a haunted cabin with three sick children, Urgent Care and ER visits. I can't tell you how sorry I am to hear that, Tamie. I so wanted this to be a time of rest and rejuvenation for you.

    About your garage ~ if you need help getting rid of stuff (as Lisa calls it "decrapifying" ), let me know. When our trash collection company tried to sell us a 40 yard bin, which would take up half of our street, at $500/week, we had to search for another alternative. We found a Mom and Pop Haul Away company, and they serve several counties.

    The son has taken over for his retired dad, and he visited today to survey our garage and give us an estimate. His guys will take whatever we want to get rid of, and put it on their very large truck. No lifting or moving or anything for us, only providing direction on what to toss and keep, and handing them a check for 1/2 the cost of a bin and the cost on our bodies in throwing stuff into the bin. Worth it!

    Lovely young man, who told us about his 2 year old daughter, who had seizures at 6 weeks and is on Keppra, after I told him our life story about our boys. He gently asked, "Do you mind if I ask what caused your sons' condition?" Of course not! It's a teaching moment, and I gladly accept those moments.

    When we told him that Michael seized every day for 22 years, and some seizures lasted more than an hour, he was stunned. "I can't handle 2 minutes of my daughter seizing, and 1 week in the hospital, let alone 22 years of hour long seizures, and the times you were in the hospital with your boys."

    The good news is that his daughter hasn't had a Keppra increase since she started the med. And her seizures are controlled. The doctor told him that she might outgrow the seizures, and we assured him that this was true for one of our dear friends, whose 2 daughters outgrew their seizures. We want to give him hope.

    So, his crew will be here Monday to begin the clearance of our garage. I have confidence they will do it efficiently and will be polite and kind, because I've met the owner, and he would accept nothing less from them. I'll let you know how it goes, and if you're interested, I'll ask him whether he could serve your area.

    For us, the timing of this is less than great, since we have so many other things going on now. But, it was the catalyst we needed to empty out the garage and deal with it. We both know that we will feel so much better having a clean, well organized garage, which someday might have a little car in it as a second vehicle to our very old van. And a brand new garage door, with a beautiful full Sunray window, and a new motor, which will be installed next Thursday. And if you need a garage door, let me know. Because this owner is also a very nice man.

    Do you live on a farm or a ranch? Because your vegetable garden sounds more like a field and your fruit trees sound more like an orchard! Oh, I can imagine that your veggies and fruits are luscious. How wonderful for you. You can't get more locally grown than your own backyard!

    Our efforts to grow veggies and herbs in the past have failed. Insects enjoyed more of our crops than we did. We have a fairly small suburban lot, but we did grow corn one year. It was so sweet and tasty, but more work than we expected. We grew squash and peppers. Garlic. Potatoes. Small yield, but rewarding. But life changed, and so did we. Now our drought-affected backyard is dirt, and will be concrete in the near future.

    I hope your garden is receiving the benefit of our current spate of rain, expected to continue over the next several days.

    Healing prayers always on their way for you, Tyler, Jerry and your family ~

    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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    UPDATE ON ME: I have been doing work in my community to show people what people with physical disabilities can do through hard work that you can read about here http://cripvideoproductions.tumblr.c...and-disability
    I also got an update on that woman "L". They found the source of her stroke. Her blood pressure got too low to supply her brain with oxygen so she had a stroke. She's on blood pressure meds now but is still having a slow recovery with setbacks.

    Rose,
    Michael had HOUR long seizures? How could you even stand to watch that?! When my teacher's eyes started moving in weird patterns from his dizzy spells for even just 2 seconds it made me sick to my stomach to watch him suffer. You are very strong and an amazing mother. I'm also glad you share your story whenever you can like I do with my CP. My teacher is still doing well btw.

    Tamie, hope Tyler gets relief 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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    ((((((funnylegs4)))))) ~

    That's wonderful that you do Taekwondo! A friend of ours, who has RA, sent us a DVD for Taekwondo for Arthritis. Jim and I haven't started it yet, and we should! And her son, who is our Godson, teaches Aikido and practices Reiki.

    I'm proud of you for your community outreach work!

    Prayers that L's BP will stabilize and that your teacher will continue to be well and strong.

    Yes, Michael's seizures were extremely intense, lengthy and difficult to watch. We were helpless; we could only try to comfort him and keep him safe. As parents and caregivers, we do what we have to do.

    For example, Jon has not slept since he woke up yesterday morning. Now, he's punch drunk, and we're on seizure watch. Just praying that he finally relents and goes to sleep early tonight.

    Keep up the good work!

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

    That's wonderful that you do Taekwondo! A friend of ours, who has RA, sent us a DVD for Taekwondo for Arthritis. Jim and I haven't started it yet, and we should! And her son, who is our Godson, teaches Aikido and practices Reiki.

    I'm proud of you for your community outreach work!

    Prayers that L's BP will stabilize and that your teacher will continue to be well and strong.

    Yes, Michael's seizures were extremely intense, lengthy and difficult to watch. We were helpless; we could only try to comfort him and keep him safe. As parents and caregivers, we do what we have to do.

    For example, Jon has not slept since he woke up yesterday morning. Now, he's punch drunk, and we're on seizure watch. Just praying that he finally relents and goes to sleep early tonight.

    Keep up the good work!

    Love & Light,

    Rose
    Hi Rose,
    Sorry for my delayed response. I”ll hopefully be more available in the next few weeks. Thanks so much!! You totally should try Taekwondo! It’s a lot of fun and I’m more in shape than ever. I find the moves keep my joints flexible so I imagine it would have a similar effect on you and Jim. One of my best friends has a son with a disability caused by a birth defect who signed up for Akido after seeing me do Taekwondo so I have heard of Akido. I think Akido has a similar style but I’m not entirely sure. I also met someone with Parkinson's who does something similar. He looks able bodied i.e no Parkinson's symptoms are visible even though he said he has had the condition for a year. Can Parkinson's be invisible in the early stages? I love doing outreach like this. I'm making all sorts of connections.
    I’m so sorry. I know that helpless feeling from when my friend had a miscarriage in 2010 and various other things similar to that. I hate seeing my friends in physical or emotional distress and being unable to stop it. When my teacher had his first dizzy spell in front of me I felt that way too. I was praying as I watched for it to stop. So so sorry to pry but was Michael consicous i.e aware during the seziures? You don't have to answer if you don't want to.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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

    I'm so happy that you've found Taekwondo to help you stay fit. Aikido is a "martial arts," and I think some of the moves may be similar to Taekwondo, but I am certainly not an expert on any of this!

    You're not prying, and I don't mind answering your questions. It's how we learn.

    But I don't actually have an answer, because I don't know whether Michael was conscious or aware during his seizures. He was not "reachable," or responsive via touch or verbal communication. His post ictal state varied from being lethargic, sleeping, to being awake and aware of his surroundings. I'm sure that he ached all over from the tensing of all of his body parts, the convulsing, etc. His hands and feet sweat profusely.

    It's difficult to find the words to describe what a beautiful, courageous soldier Michael was and still is. And Jonathan, every bit the same. Every day begins with a smile and "I love you." My Angels. How I adore them.

    Stay the course, funnylegs4. You are on your way to greatness beyond your imagining.

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

    I'm so happy that you've found Taekwondo to help you stay fit. Aikido is a "martial arts," and I think some of the moves may be similar to Taekwondo, but I am certainly not an expert on any of this!

    You're not prying, and I don't mind answering your questions. It's how we learn.

    But I don't actually have an answer, because I don't know whether Michael was conscious or aware during his seizures. He was not "reachable," or responsive via touch or verbal communication. His post ictal state varied from being lethargic, sleeping, to being awake and aware of his surroundings. I'm sure that he ached all over from the tensing of all of his body parts, the convulsing, etc. His hands and feet sweat profusely.

    It's difficult to find the words to describe what a beautiful, courageous soldier Michael was and still is. And Jonathan, every bit the same. Every day begins with a smile and "I love you." My Angels. How I adore them.

    Stay the course, funnylegs4. You are on your way to greatness beyond your imagining.

    Love & Light,

    Rose
    Thanks for answering that Rose. It was sweet of you! I wouldn't know either. I read a book called "Ghost Boy" where he was aware but could not respond but with seizures you never really know. I heard some people can talk while they are having a seizure. I do not know if that's true. Thanks for the encouragement! Your boys are so amazing and so much braver than I will ever be!

    Little update: I heard from my teacher with the stroke again recently. He has apparently developed a new love of gardening which calms him and helps with the sensory issues. Nature can be so healing! I'm glad he finally has a hobby that keeps his stress level down. He deserves to relax.
    Last edited by funnylegs4; 04-25-2016 at 10:44 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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