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Thread: CN Central: MAY UPDATES

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    Smile CN Central: MAY UPDATES

    HAPPY MOTHER'S DAY!

    ((((((Hugs to All)))))) ~

    It's hard to believe that May is here. Time flies when you're constantly busy. I do hope that our absentee members will check into this thread this month with updates. I miss you. And you are all in my prayers.

    Jon is still battling insomnia and lymphedema. At the end of April, he had his cath and his G Tube changed. He did well with both.

    The lift sheets and straps we ordered didn't work out. We spent 4 hours with the RN from Hill Rom stating why we didn't want to use the dense sheet on Jon's bed, but she convinced us to try it. The result was breakdown of Jon's skin after less than 24 hours. So that is nixed. A waste of 4 months of my time trying to get these things to help us lift Jon.

    This was all handled so poorly. The nurse should have come out first to assess Jon's needs. Water under the bridge, but I'm still pretty upset about it.

    Jim had his cataract surgery today, and all went smoothly. He's been in bed sleeping all day and evening. Our PCP gave Jim a clean bill of health as a go ahead for the surgery, so we are hopeful that his healing will be rapid.

    It's been a continuous whirlwind of activity, appointments, new garage door, cleaning out the garage ... it's just been something or another, for nearly 2 months now. So we're hoping things will settle down a bit.

    This month is especially challenging for me. Michael coded and entered the hospital on Mother's Day 13 years ago, then passed on Memorial Day. Every year, I recall vividly our last days with Michael. It's a painful, unending journey.

    But today, I noticed that Michael's red rose outside of Jon's window is thriving and throwing out leaves to indicate blooms are on the way. Overcoming the drought to bring us flowers. Michael is forever with us.

    Please check in with your updates. I'm thinking of and praying for all of you and your precious children, families, and friends.

    Wishing you a BEAUTIFUL MOTHER'S DAY!

    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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    Rose you've been busy as always! So glad the surgery went well. We're in the process of a big clean out too. Kathleen's graduating this year so we have planned a big party and need to get ready
    I hope you can enjoy Mother's Day, I know its hard to ever overcome that kind of grief. It never leaves you. But I'm glad you have the Roses... Kathleen entered the Rehab hospital 14 years ago this week. We had no idea what her outcome would be and almost lost her. It's an extremely emotional time still for me. It was life altering for our family.
    Kathleen has been doing really well. She's walking much better than she has in a very long time. I'm so glad we went through with her surgery. She doesn't tire like she used to and she hardly ever uses her wheelchair. We've had an issue with blood in her urine. She saw her urologist and he thinks it's irritation of the stoma. We tried to passively widen the channel but Kathleen would not leave the catheter in. So I emailed him and should hear back soon what to do next. We had spring break last week and had a great time doing some fun things together. We went to see Jungle Book which was awesome. Went out to lunch with my sister and Kathleen's cousins. Bike rides, reading, and we babysat one of Kathleen's little cousins. She loves babies so that was a highlight. I plan on a very quiet and restful Mother's Day. Usually breakfast in bed and pretty much resting the rest of the day. That's all I ask for it's priceless!
    Wishing a happy Mother's Day to all our BT Moms
    Mary Grace

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    Happy Mothers Day to all the mothers here on BT,especially CN! You ladies are awesome! I had a wonderful mother's day with my mama and our friends. Not much to report on my end except that I am doing more lower body exercises and have experienced an increase in sensation in my lower half. Could this be from my muscles getting stronger? Can strength equal sensation for people with CP or brain damage? Just curious.

    Rose, Thanks for the PMs and I hope Jim and Jon are doing well.

    Mary Grace, your mother's Day plans sound wonderful and I'm so happy Kathleen is walking so much!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Got a call yesterday morning at 2:30 am. My son had been rear ended by a drunk motorcyclist on the I 5 doing 100 mph. Thankfully he survived unscathed, but the motorcyclist was in very bad shape. My sons fireman/paramedic training kicked in and he protected the 23 yr. old from oncoming traffic, had the presence of mind to call the CHP and request an ambulance and a helicoptor and have that portion of the freeway shut down. He directed other car drivers to C-spine the young man until help arrived. My sons Prius was totaled and another car hit the motorcycle sending more debris over all the lanes, disabling it. Three vehicles down. One ambulance ended up with a flat tire from the debris. We have no idea if the motorcyclist survived or not. He was transported to the trauma center via the helicopter. The CHP told my son that the motorcyclist was lucky to hit a fireman who could assess him and help him until emergency services arrived. I had a blessed Mother's Day, my son got to come home but I can only imagine the pain that young mans Mother is in due to his poor judgement and life altering mistakes. He was missing most of his teeth, a good portion of his face (even though he was wearing a full face helmet) and had a severely broken tib/fib. Those were the immediate injuries documented on site. When are people going to learn not to drink and drive?

    To top it off, Tyler had several miserable days last week. I contacted his Primary Care doctor and urologist and gave them an update. The PC coordinated with the urologist and the physical medicine doctor to try and figure out what to do next. We are waiting for their thoughts. Tyler is pretty much living on Motrin and Valium. His seizures are increasing daily. This is beyond frustrating. Bitter sweet week.
    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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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    The trauma of Kathleen's rehab 14 years ago is understandably still with you, and I do understand reliving those memories. But here you are today, and Kathleen is doing so well with her walking, and you enjoyed a wonderful, fun Spring Break together. What a tremendous blessing. Have you heard from the Urologist yet? I hope the solution is simple. Did you have breakfast in bed? What a treat that must be! Hope you had a lovely Mother's Day!

    Funnylegs4 ~

    I don't know the answer to your question, but I think exercise would correlate to muscle strengthening, even with CP. Your PT would probably be the best person to consult for the definitive answer. So glad that you had a wonderful day with your Mom and family.

    Tamie ~

    I give thanks that your son survived this horrible accident, and I pray for healing for the young man and strength for his family, as his road to recovery will be long, from the description of his injuries. Twenty-three is an age of feeling immortal and indestructible, which leads to making poor choices. No Mother should hear the words, "Your son is going to die," on Mother's Day. I know that pain. It is indescribable. So, I pray for this young man's mother that her son is resilient and will recover fully.

    Your son is a hero, as are all firefighters, in my opinion. He did everything right in an effort to save this young man's life, while he was also probably a bit in shock. Please deliver a big hug from me to him.

    I'm so very sorry that Tyler's seizures are increasing. I'm praying that the team of docs will come up with the best solution for Tyler to relieve him of the stress and pain of AD. That solution is so long overdue.

    Bless all of you and those you love ~

    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 Rose, Thanks! I will ask my PT when they return from their vacation. I just thought I would ask you all in the meantime while I await their return.

    Tamie, I thank God your son is all right! He is so brave. A true God send.

    UPDATE: That woman "L" who had a stroke is gaining weight and is experiencing slight swelling throughout her body like my teacher did. Her docs want her to find some nice gentle exercise she can do to control her weight and the swelling that won't trigger her fainting spells. Any ideas on some nice gentle exercise she could do just to keep herself moving? She's looking for therapists etc but due to money issues the process is slow.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Tamie, What a scary thing for your son! I'm so thankful he's OK. So sorry the seizures are getting worse.I pray that the Dr.s can figure this out.
    Funnylegs, It makes sense that you would get more feeling with increased muscle strength but I can't answer for sure. I know that Kathleen had no feeling after her strokes she didn't even recognize she had a left side. As she gained strength she did get feeling back. Does "L" have access to aquatherapy? this is a great way to exercise with a little resistance for your muscles but also easier to move and loosens up tight muscles which is what can make exercise harder for a stroke patient. If no access to professional aquatherapy maybe a friend who has a hot tub or heated pool?
    Rose, I've spoken with the urologist a couple times. They think it's most likely a change in the stoma. Maybe gotten smaller, or could be a change that would need "fixing". But we have another appointment and the Dr. wants me to record (picture if possible) how much blood and how often. This week I haven't seen much... The next step if he deems neccesary would be to look into the stoma under anesthesia. I did have breakfast in bed! Kathleen of course joined me LOL. I had my favorite which is a cheese danish. I spent a very restful day... My daughter gave me gift cards and my son gave me a beautiful Movado watch. My husband took Kathleen to the market to make a beautiful bouquet of flowers, candles and magazine. ( I also bought myself a new pair of sneaker LOL).
    Yesterday my older daughter Kelly put a bid in to buy a condominium! She's been approved for a mortgage already and shoudl know today if her bid was accepted. We're very excited for her.
    Mary Grace

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    Just a little update and thoughts. I spoke to a group of students about writing i.e film writing the other day in a way that was kind of similar to how my teacher with the stroke does i.e similar environment, number of students etc and WOW I don't know how he does that full time! It was very stimulating and kind of intense which I know he actually likes but that takes a lot of guts. After seeing how my own nervous system reacted to the stimulation my guess would be those dizzy spells of his are overstimulation. He needs that kind of stimulation mentally but his little body was getting physically overwhelmed. That must be way he looked so physically weak at moments. I don't know how he managed to pull everything off so smoothly in general and especially after the stroke. He's more brave than I'll probably ever be.

    Thanks Mary Grace, Makes sense and I'll pass along the information. I had aqua therapy once. It was very soothing.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Hugs to All)))))) ~

    Mary Grace ~ Your Mother's Day sounds absolutely lovely. I'm so happy for you. Was Kelly's bid on the condo accepted? How exciting for her! How is Kathleen's bleeding now? I hope it has subsided.

    funnylegs4 ~ With experience, you will become more relaxed and confident in teaching and making presentations. It can be exhilarating as well as exhausting to expend that energy. There is also a tremendous personal reward in knowing that you've educated and enlightened others. Keep up the good work! I'm so proud of you!

    Tamie ~ Please check in with an update. I'm worried about Tyler and you and Jerry.

    Our Update

    Jim is recovering well from his cataract surgery. Eye drops 10 times a day, down to 6 times a day. Of course, I am the Eye Drop Keeper, who has to remind Jim that it's time for a drop. I'm also the Drop Lady, who administers all of the drops.

    Jim got his driver's license renewed, but now his right eye is deteriorating. So, we'll be doing this surgery again in a few months.

    JON HAD A 25 MINUTE SEIZURE LAST NIGHT.

    Out of the blue. A breakthrough seizure. His urine and bowel output are great. SATS are excellent, heart rate good. Lymphedema severe in his left leg and foot, with weeping blisters. I've asked his doctor to authorize a visit with the PT who specializes in lymphedema. Hope we see him next week, along with Jon's nurse, to change his catheter and possibly do a blood draw.

    The seizure occurred at 3 a.m., after I'd gone to bed. Jim didn't wake me up, but I woke up when I heard him talking to Jon. I didn't know it was seizure-related, and I fell back to sleep. Jim told me about the seizure, when I got up this morning.

    Jon's hands were in a fisted claw, but he was not convulsing. Jim thinks Jon might have been staring, and he isn't sure whether Jon heard or was aware of him. No grimacing. No sounds, like grunting or groaning. No arching. No straining. It's difficult, even after all of these years, to glean details from Jim about seizures.

    Prior to this seizure, Jon had thrown his pillow, blanket, and towel roll on the floor, and taken off his shirt and thrown it on the pile. He did this several times. He is known for doing this, maybe to express dissatisfaction or boredom. But taking off his shirt was more than his usual behavior.

    Michael seized several times every day for 22 years. Jon's seizures are sporadic and unpredictable.

    We've slightly increased his seizure meds today. We hope this will prevent another breakthrough seizure. What scares us the most is the possibility of his seizures escalating into a tonic clonic, which can't be stopped without massive drugs and lands him in ICU. That's his modus operandi.

    Sending healing prayers for all ~

    I've carved out a special place here



    and there are many spots around me just as lovely, so please join me ~

    Smoothies on the house!



    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 05-19-2016 at 08:57 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.

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    REALLY COOL UPDATE: I had a really awesome day today. First off, my teacher with the stroke asked me to come see him. I figured he just wanted to see me to say hi etc as always but this time he surprised with a GIFT! I’d tell you what it is but it probably would not make much sense in a written form LOL. Basically it’s related to what he was teaching us around the time he suffered the stroke. I was so honored he thought of me! He wanted to thank me for supporting him through his recovery by giving me the gift. I had no idea that my support meant so much to him! He looked wonderful! No more swelling,twitching,or odd eye, head or neck movements. He kept his head and eyes focused in my direction the entire time. He looked the same way he did before the stroke and had a lot of energy. To see him go from looking nearly too physically weak to stand, to being so strong and fit is amazing! I think he’s been working out or something because he seems more toned and I think he lost at least 5 lbs which I hope will help prevent him having another stroke. It was as if the stroke never happened. However he did tell me that he now has official accommodations for his disability where he works so he can save his energy so I guess he still feels the effects of the stroke even though he didn’t have any outward signs of the disability. I’m proud of him for using the resources he needs to prevent those awful dizzy spells.

    I also met 3 new fans today who basically went into total fan girl mode over my work! hehehe

    Rose, Thanks! Back in December my teacher with the stroke looked me straight in the eye as best he could and told me he loved teaching for exactly those reasons.
    I’m so sorry Jon had a 25 moment sezuire! How awful and scary! How is he now? I’m praying for no seizures.
    Last edited by funnylegs4; 05-26-2016 at 04:26 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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