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Thread: PT Visit for Lymphedema

  1. #11
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    Rose, so glad that Jon has such a caring team of professionals. Your PT sounds wonderful and I know it must feel amazing to be able to give back to him in such a way. You're lucky to have each other... That's so sweet of him to offer to visit as a friend. Kathleen has many teachers and therapists who have become great friends with our whole family. When it works it becomes a very personal relationship.I can' imagine having the fires so close to your home.Praying for all who are in i's path.
    Tammie I continue to pray for Tyler. What a long haul this has been for you all. Your yard sounds beautiful.
    We are leaving for Wildwood NJ on Sunday morning! Our yearly vacation with many friends. The friendship started when Kathleen was in first grade. We became very close friends with her first grade teacher and now with her whole family. Today is Kathleen's graduation and this teacher will help her to the stage to get her diploma. Yesterday was my last day with the kids I babysit. One family has been with me for 7 years 2 kids the youngest will go to kindergarten in September out of my school district so they won't be coming next year. This brought many tears, they are very much like family. Another family just had their second baby and planned on coming in September but she wants to stay out till January. I told them I may need to fill their spot (I only take a couple of children) for financial reasons I just can't wait that long, they surprised me and said they would pay me to keep the spot open for them. It really made me feel their appreciation and love. So today Kathleen and I start our summer vacation! I love our time together! Her aunt will be coming up for the graduation party in July. Since we leave tomorrow we won't do her party today. I will try to post a couple of graduation pictures when I can. thank you all for sharing this journey! Prayers for good health and peace...
    Mary Grace

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace)))))) ~

    The fires are not near our home, thankfully. Jim and I exchange glances, when we hear a helicopter flying over our house, since that's the path to the golf course lake, where they pickup water to drop on the fires. Everything in California is tinder dry, so we are prepared for one in our vicinity at any time. We pray that it doesn't happen, but we know from experience that it can, because it has.

    Graduation Night! Oh Wow! Already?!! How exciting! Wish I could be there! Looking forward to all of your photos!

    CONGRATULATIONS KATHLEEN!

    And then your annual vacation ~ fun and friendship ~ and more great photos! Have a wonderful time, and I know you all will.

    I can only imagine that it was tough to say goodbye to those two sweet children and their parents after 7 years of providing their care. That's so great that your other family is paying you until they need you. I'd do the same! I wouldn't want to lose you as my children's caregiver!

    Have a fabulous vacation!

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  3. #13
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    Hi Rose and everyone! We are just home from 10 days away in the UK (what a mess there now with Brexit!). Nick was over this afternoon to watch the european cup soccer and I made sausage rolls (his favourite). We had fun :) Rose, it's never dull in your house. I'm sorry that Jim had such a tough day on Father's Day and I'm sorry too that dear Jon has been having trouble with swelling. Your PT sounds like a truly lovely guy though, and very talented. Re the granulation tissue around the trache, I remember we used silver nitrate powder for that at Nick's Gtube site a long time ago. Is this a possibility? Gosh, good luck with the termites! I hope you can get that solved soon.
    Nick's health is rock solid lately, thank goodness. My Mom is getting more frail and I'll go see her on Tuesday. She said she's too tired now to go out to sit on her balcony :( Not sure why that is, but I'll check it out when I get there. I send my love to you all! I'm going to post something I wrote on caregiving and Brexit in another thread. Hugs, 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
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    I apologize for being in absentia. Much going on here and worldwide these days.

    Jon's battling insomnia again. He had a 15 minute seizure at 2:15 a.m. today, just as I was getting ready to go to bed. Jim was with him. And when Jim came up to say goodnight to me, he didn't mention Jon's seizure. I knew that Jim was giving Jon his meds, and probably picking up Jon's pillows off the floor and rearranging Jon and putting the pillows back in place. I figured that he was putting on a new CD for Jon to help him go to sleep. For a split second, I thought, "Maybe Jon is having a seizure." Then, I discarded that idea, since I expected that Jim would call to me to come downstairs.

    Instead, when I got up this morning, Jim informed me of Jon's seizure, and he told me that he wanted me to get some sleep, which is why he didn't tell me about it after it happened. I appreciate his concern for me, but I would prefer to be present, if Jon is seizing, so that I can see it, describe it to a neuro, if needed, at the hospital, time it, etc. Otherwise, I have to ask Jim a lot of questions, and he doesn't always provide me with a definitive answer.

    Jon slept for 6 1/2 hours today, falling asleep at 3:45 a.m. He's been drowsy and nodding off all day. His vitals have been good, but he's wiped out.

    Yesterday, his new nurse visited to change Jon's catheter. We allow the catheter to come out on its own, and that took quite awhile. Upon insertion of the new catheter, we had no return. We waited, we tried changing his position. Nothing. When she tried to inflate the cath balloon, Jon displayed discomfort. She also tried flushing the catheter, and Jon's response was apparent discomfort. We agreed that something was wrong with the catheter. Second defective catheter we've had this year.

    So, we had to wait for this one to be expelled, and she had to insert another catheter. Jon was so brave, but he was visibly uncomfortable. He is still showing discomfort with his cath today. It may burn, sting, itch, anything, but he can't tell me, which is so incredibly frustrating.

    His urine output is lower than it should be, because we didn't use his stockings or pillow yesterday. We were concerned about pressure on his groin. Tonight, he has a temp of 100. This always happens, when Jon retains fluids.

    We did give him MOM last night, and he is producing in his colostomy bag, so, YAY! for that accomplishment! Lymphedema seems relieved, but he still has fluid in his system.

    I'm beginning to feel like Sisyphus pushing that boulder up a steep hill. In truth, Jon has had a fluid management issue since at least 2009, if not long before. We are never going to conquer this. All we can do is keep it at a manageable level, where he is not in pain, not distressed, not ill.

    As Jim and Jon, and I have learned, this is the daily struggle.

    What's next? We are on the edge of our seats waiting ...

    Healing prayers for all of you and your children and families and loved ones ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  5. #15
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    I hear you Rose. So hard to watch our boys in distress and have no idea where it is coming from. Hope the urine output increases and the distress lowers.

    Tyler is finally scheduled for the Urodynamic test. It will be done on July 25th, barring any new UTI's in the meantime. Tyler is choking up large quantities of very thick mucus from his lungs when he is in an AD episode. Can't breathe. Out comes the suction machine. Still having at least 3 episodes a day. Frustrating.

    We are heading up to the cabin tomorrow for a week if Tyler tolerates the altitude and his episodes don't get any worse up there. Hope everyone here has a great 4th of July.
    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."

  6. #16
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    ((((((Hugs to All)))))) ~

    Donna ~

    Such great news that Nick's health is stable. May it continue to be so. How is your mom? What is your assessment of her current status? It's so difficult to watch our parents age and lose their abilities. I know, and I send lots of love and strengthening prayers to you.

    Thank you for your suggestion about silver nitrate. We have a treatment for granulation ~ eucalyptus oil, which we used successfully with Michael's granulation around his G Tube stoma. But I don't know whether it would be safe to use around Jon's trache. Silver nitrate can be painful, and the tissue around his trache stoma is very sensitive. So we have to be careful. His nurse will be changing his trache on her next visit, so we'll discuss it then.

    Happy Canada Day! Hope you all had a fun day celebrating.

    Tamie ~

    Finally, an appt. for the Urodynamics test! I'll pray that Tyler remains well, so that he can have the test, and that the test will reveal helpful information to diagnose and treat his AD.

    I'll also pray that Tyler tolerates the altitude, so that you can have a fun week at the cabin. The mountains should be lovely next week, since we're in a cooling trend.

    I worry about the fireworks and our dry land/brush/trees, etc. With fires raging already, I just wish we could forego fireworks. A few years ago, our City Council stupidly allowed private fireworks again. We listen all day to bangs and what sound like gunfire and bombs. Not only am I worried about fires around us and across the state, with all of the violence going on in the world now, the last thing I want to hear is that sound.

    Stay cool and safe and have fun at the cabin.

    Our Update ~

    Jon's peeing has really slowed down, and his belly is distended with fluid. Temp is between 100 and 101, keeps fluctuating. SATS 94/Heart Rate 112. These episodes usually don't last that long, so we're trying not to become anxious or over-worried.

    Our goddaughter texted me today that she was taking her mom to ER for a CT scan, after she bumped her head and has been dizzy, nauseous and unbalanced since Weds. She has a severe concussion. At home resting, while goddaughter takes care of her.

    Then a dear friend emailed me that her precious dog had a stroke!

    What the heck is going on here?!?!

    So, I've added a prayer to my long list ~ "Please, that's enough! Thank You!"

    I'm off to the



    Smoothies available for everyone ~



    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  7. #17
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    Jon's peeing has really slowed down, and his belly is distended with fluid. Temp is between 100 and 101, keeps fluctuating. SATS 94/Heart Rate 112. These episodes usually don't last that long, so we're trying not to become anxious or over-worried.

    Our goddaughter texted me today that she was taking her mom to ER for a CT scan, after she bumped her head and has been dizzy, nauseous and unbalanced since Weds. She has a severe concussion. At home resting, while goddaughter takes care of her.

    Then a dear friend emailed me that her precious dog had a stroke!

    What the heck is going on here?!?!

    So, I've added a prayer to my long list ~ "Please, that's enough! Thank You!"
    Rose, The dog had a stroke?! Is the dog still alive? If so, dogs tend to get strokes in their balance or motor regions but adapt much better than humans do, especially emotionally because dogs accept what is. These links may help http://www.petwave.com/Dogs/Health/Stroke/Living.aspx
    http://siriusdog.com/dog-stroke-signs-symptoms I saw 2 vet documentaries where 2 dogs had pretty bad strokes and returned to either normal function or nearly normal function. Tell your friend not to give up on their dog too soon!
    I pray your goddaughter's mother has a quick recovery from the concussion. Those are rough. Your "what the heck is going on!" remark is exactly how I felt when one of my best friends nearly choked to death just weeks after my teacher's stroke.
    Last edited by funnylegs4; 07-02-2016 at 09:13 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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    ((((((funnylegs4))))))) ~

    Thank you for the links. I also looked up info on dog strokes, which I sent to my friend. As far as I know, her dog is recovering.

    My goddaughter's mom (who is also my dear friend) was texting me Friday night. I gently told her to put down the phone and rest. Everything I've read about concussions advises to give the brain a rest ~ no TV, computer, texting, reading, etc. No thinking essentially. So I haven't heard from her, and my goddaughter isn't replying to my texts.

    So, I'm waiting and praying. Thank you for your prayers!

    Love & Light,

    Rose
    Mom to Jon, 47, (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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  10. #19
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4))))))) ~

    Thank you for the links. I also looked up info on dog strokes, which I sent to my friend. As far as I know, her dog is recovering.

    My goddaughter's mom (who is also my dear friend) was texting me Friday night. I gently told her to put down the phone and rest. Everything I've read about concussions advises to give the brain a rest ~ no TV, computer, texting, reading, etc. No thinking essentially. So I haven't heard from her, and my goddaughter isn't replying to my texts.

    So, I'm waiting and praying. Thank you for your prayers!

    Love & Light,

    Rose
    You're welcome! My teacher with the stroke said the constant resting was incredibly boring and sometimes he would do things that were not exactly recommended to try to deal with the boredom as he felt he might lose his mind from being bored.(Hence why I always worried if he would actually listen to his body or not in my old posts where I was so emotional.) Maybe your goddaughter's mom was kind of doing the same thing. I had a colleague who got a concussion from falling on a title floor when she fainted which was terrifying and she wasn't allowed to use electronics at all either. In a week or so she was back to normal and I pray your goddaughter's mom and your friend's dog continue to recover and return to their usual selves.
    Last edited by funnylegs4; 07-06-2016 at 07:26 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  11. #20
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    Earth mom to angels, I don't know where you're located, but if you're in Texas, there is a lymphedema Institute outside of Houston in a town called Webster. My fiancÚ has lymphedema in both legs, and he uses a pneumatic compression pump for an hour a day at least once a day. He supposed to do it twice, but sometimes just doesn't feel up to it. He's wheelchair-bound, and we're still trying to figure out what his true diagnosis is. Please private message me if you have any questions.

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