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Thread: What Is Next For Jonathan?

  1. #141
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    Oh Rose, why can't ANYTHING be easy just for once - like an order for a trache change or a 100ml bottle of sterile water?!!! Oy, it's all so exhausting. My dear, here's a lovely film of an 88 year old Dad welcoming home his 53 year old son from a week holiday. This will cheer you up - it's adorable. <blockquote class="twitter-tweet" data-lang="en"><p lang="en" dir="ltr">An 88-year-old dad is reunited with his 53-year-old down syndrome son after spending a week apart for the first time ever. <a href="https://t.co/5hvl0FkGKS">pic.twitter.com/5hvl0FkGKS</a></p>&mdash; The Dad (@thedad) <a href="https://twitter.com/thedad/status/1035969637958209536?ref_src=twsrc%5Etfw">September 1, 2018</a></blockquote>
    <script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
    Sending much love xoxo Donna
    And welcome back, Tracy! xox The 3 Amigas are together again! PS: if this embedded link doesn't work, try this: https://twitter.com/i/status/1035969637958209536
    Last edited by Donna Thomson; 09-03-2018 at 06:15 AM.
    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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  3. #142
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    Rose,So sorry about all the fluid! Yikes!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #143
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    Thumbs up

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

    Donna ~

    What a beautiful reunion between Father and Son! Oh the joy and love there! And I'd imagine that this is one reason for their longevity. Thank you so much for sharing that video. It lifted my heart and spirit.

    funnylegs4 ~

    Thank you.

    We're having bad water karma, I guess. First, our water heater exploded (in essence, since water was dripping from the rafters). Then, Jon's body started leaking massive amounts of fluid.

    I am pleased to report that the flood seems to be stemming now. I'm hoping that with the next wound care pad change, we'll have much less. The site is healing nicely, and to look at it, no one would imagine that this amount of water is gushing from it. But, we know. The last time this happened, Jon had a tiny dot, smaller than the head of pin, on his thigh. And you would have thought that his entire leg had been slashed with the amount of fluid escaping.

    Oh, and I forgot to mention the blister on the granuloma on his trache stoma. (Hey! Maybe I could become a "medical rapper!" ) Yeah, a blister, which has now broken and left a wound.

    So, we're now treating him from head to toe, literally. Trache stoma, left thigh, left big toe (all toes), lymphedema leg rash, coccyx, left buttock, and testicles.

    I told Jon today, "Dude, we need one giant Optifoam pad to wrap you in! We could just put it on the underpad and roll you over! That would be so much easier!" Jon laughed.

    He is incredibly patient, strong, and full of love and light. We adore him. Actually, everyone, who has ever known Jon, adores him.

    In November, Jon will be 49. And Donna, like you, it takes my breath away. How blessed we are.

    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. #144

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Donna ~

    What a beautiful reunion between Father and Son! Oh the joy and love there! And I'd imagine that this is one reason for their longevity. Thank you so much for sharing that video. It lifted my heart and spirit.

    funnylegs4 ~

    Thank you.

    We're having bad water karma, I guess. First, our water heater exploded (in essence, since water was dripping from the rafters). Then, Jon's body started leaking massive amounts of fluid.

    I am pleased to report that the flood seems to be stemming now. I'm hoping that with the next wound care pad change, we'll have much less. The site is healing nicely, and to look at it, no one would imagine that this amount of water is gushing from it. But, we know. The last time this happened, Jon had a tiny dot, smaller than the head of pin, on his thigh. And you would have thought that his entire leg had been slashed with the amount of fluid escaping.

    Oh, and I forgot to mention the blister on the granuloma on his trache stoma. (Hey! Maybe I could become a "medical rapper!" ) Yeah, a blister, which has now broken and left a wound.

    So, we're now treating him from head to toe, literally. Trache stoma, left thigh, left big toe (all toes), lymphedema leg rash, coccyx, left buttock, and testicles.

    I told Jon today, "Dude, we need one giant Optifoam pad to wrap you in! We could just put it on the underpad and roll you over! That would be so much easier!" Jon laughed.

    He is incredibly patient, strong, and full of love and light. We adore him. Actually, everyone, who has ever known Jon, adores him.

    In November, Jon will be 49. And Donna, like you, it takes my breath away. How blessed we are.

    Love & Light,



    Rose
    You are strong and blessed. I hope that everything is working out now. My prayers are always with you and your family.

    rachel

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  9. #145
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    Unhappy Seizures Are Back!

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

    It's 2 a.m., and we're on seizure watch. When I went into Jon's room at 12:30 a.m. to give him his seizure meds, he was seizing. Clenched fists, facial grimace. I don't know how long he'd been seizing before I got to him, but it lasted 5 minutes. I stayed with him for 45 minutes, went to the bathroom, and Jim got up to go to the bathroom, checked Jon and called to me that Jon was seizing. That was 1:30 a.m., also 5 minutes.

    Jim wants me to go to bed, but I can't sleep, until I know Jon is sleeping. He typically doesn't seize when he's sleeping. And his seizures all occur as he is trying to fall asleep.

    He had a rough night last night, and only got about 5 1/2 hours of sleep, so that could be a factor. Otherwise, I don't know what is going on. He's been doing fine on his increased meds doses.

    It just occurred to me that he started a new manufacturer Depakote! He's had it before, but it is a change ... hmmm ...

    Nothing is easy. Sigh.

    Time to check in with Jim and Jon.

    Prayers for all, who are in the midst of Florence ~

    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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  11. #146
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    Rose, I hope you are both sleeping now. Or maybe you are out on your walk.

    Blessings to you all,
    ANN
    There comes a time when silence is betrayal.- MLK

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  13. #147
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    ((((((ANN)))))) ~

    Thank you for your blessings!

    Jon fell asleep about 2:30 a.m. and slept until 1:00 this afternoon. Soundly. I went to bed at 3:00, and Jim stayed up until 5:00 to keep an eye on Jon. Jon is rested and in good spirits, as if nothing happened.

    We increased his seizure meds again hoping that will put the kibosh on the seizures. It's really our only alternative. We save Ativan for tonic clonic seizures.

    Jim woke up with head to toe RA pain. He was feeling fine, when John was here yesterday to turn Jon. Instead of letting Jon do all of the heavy work, Jim just had to pull Jon twice to center him. John said he'd do it, but Jim insisted, even as I begged him not to do it. "I'm all right. I didn't strain."

    I started on Lecture #1: "When John's here, let John do everything. If you overdo, you'll suffer the next day, and then that means you can't help me pull Jon up in bed, which I can't do on my own. So, you have a set back and that makes it harder for me, and I worry about you. Then, you have to take extra steroids, which we're trying to avoid. You always say that you're fine, but you forget that you really aren't fine. And then you pay for it."

    Jim's response is: "I can't just sit/lay here all day and night and watch you work yourself into the ground. I want to help you."

    My reply: "You do help me in many ways. When John is here ..."

    Today, Jim caved and said "Lesson learned. I will just be a couch potato."

    I'm sure that Jim would feel much better, if he got some exercise, so now I need to work on that with him. Just easy exercises, like Qigong for RA. We have a video. I need to get us started on it.

    I did walk this morning, as I'd missed several days of walking due to the Toenail Team on Tuesday and going to the store on Wednesday. It's important for me to walk for a variety of reasons, primarily for my RA. When I get up in the morning, I can barely move. I have a glass of freshly squeezed orange juice, put on my walking clothes and hit the trails. No matter how severe my pain is, once I get started, it begins to abate. I get fresh air, a cardio workout, sunshine, and to meet and greet neighbors and pet their dogs. Very therapeutic.

    We'll be on seizure watch again tonight, praying that the increased doses will be effective. It is always nerve wracking for us, because many times, his seizures have generalized to tonic clonic, and we've had to call paramedics, have Jon intubated, and in ICU for weeks.

    Another reason to increase his meds: he's peeing like two race horses. That may be depleting his meds a little.

    In addition to this, we're quite worried about John's mother, who is back in the hospital with dehydration, a UTI (very frequent for her), and possible seizures or stroke. John's sister found their mom lying in bed in urine and feces, staring at the wall yesterday. A few months ago, she had a shunt placed, and she's had multiple problems (infection, pain) since then. She's living in a retirement community, but I told John yesterday that he needs to consider one on one care. I don't think she can be left alone anymore. He said that he and his sister are looking into it. So stressful and sad.

    Life ... We never know what is waiting around the bend ...

    Thanks again, ANN ~

    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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  15. #148
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((ANN)))))) ~

    Thank you for your blessings!

    Jon fell asleep about 2:30 a.m. and slept until 1:00 this afternoon. Soundly. I went to bed at 3:00, and Jim stayed up until 5:00 to keep an eye on Jon. Jon is rested and in good spirits, as if nothing happened.

    We increased his seizure meds again hoping that will put the kibosh on the seizures. It's really our only alternative. We save Ativan for tonic clonic seizures.

    Jim woke up with head to toe RA pain. He was feeling fine, when John was here yesterday to turn Jon. Instead of letting Jon do all of the heavy work, Jim just had to pull Jon twice to center him. John said he'd do it, but Jim insisted, even as I begged him not to do it. "I'm all right. I didn't strain."

    I started on Lecture #1: "When John's here, let John do everything. If you overdo, you'll suffer the next day, and then that means you can't help me pull Jon up in bed, which I can't do on my own. So, you have a set back and that makes it harder for me, and I worry about you. Then, you have to take extra steroids, which we're trying to avoid. You always say that you're fine, but you forget that you really aren't fine. And then you pay for it."

    Jim's response is: "I can't just sit/lay here all day and night and watch you work yourself into the ground. I want to help you."

    My reply: "You do help me in many ways. When John is here ..."

    Today, Jim caved and said "Lesson learned. I will just be a couch potato."

    I'm sure that Jim would feel much better, if he got some exercise, so now I need to work on that with him. Just easy exercises, like Qigong for RA. We have a video. I need to get us started on it.

    I did walk this morning, as I'd missed several days of walking due to the Toenail Team on Tuesday and going to the store on Wednesday. It's important for me to walk for a variety of reasons, primarily for my RA. When I get up in the morning, I can barely move. I have a glass of freshly squeezed orange juice, put on my walking clothes and hit the trails. No matter how severe my pain is, once I get started, it begins to abate. I get fresh air, a cardio workout, sunshine, and to meet and greet neighbors and pet their dogs. Very therapeutic.

    We'll be on seizure watch again tonight, praying that the increased doses will be effective. It is always nerve wracking for us, because many times, his seizures have generalized to tonic clonic, and we've had to call paramedics, have Jon intubated, and in ICU for weeks.

    Another reason to increase his meds: he's peeing like two race horses. That may be depleting his meds a little.

    In addition to this, we're quite worried about John's mother, who is back in the hospital with dehydration, a UTI (very frequent for her), and possible seizures or stroke. John's sister found their mom lying in bed in urine and feces, staring at the wall yesterday. A few months ago, she had a shunt placed, and she's had multiple problems (infection, pain) since then. She's living in a retirement community, but I told John yesterday that he needs to consider one on one care. I don't think she can be left alone anymore. He said that he and his sister are looking into it. So stressful and sad.

    Life ... We never know what is waiting around the bend ...

    Thanks again, ANN ~

    Love & Light,



    Rose
    Sorry about Jon's seizures! Yes gentle movement decreases pain. This same principal works with my disability as well to prevent stiffing and locking of the joints. I'm so sorry about John's mother too. I know sudden loss of bladder or bowel control can definitely be a sign of a stroke and I'm really praying its not that. Thanks for the Florence prayers. I'm not near it but I know folks who are. They are fine so far.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  16. #149
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I'm glad that you're not affected by Florence, and I hope that your friends are safe.

    John visited today to turn Jon. His mother is in rehab now, and she has an indwelling catheter. I think this should be her go to situation, as she tends to get dehydrated, which leads to a UTI. This is chronic for her over the last 5+ years. When she gets a UTI, she becomes befuddled, she loses her memory, she stops in mid-sentence. Very similar to a stroke. Her sister, who had severe RA and took RA meds for many years, had the same issues and spent the last 6 years in and out of the hospital/rehab, until she died last year. John says that his aunt was the same way as his mother is now.

    John is being stoic, recognizing that he and his sister are doing all that they can for their mom. His sister is very distraught and having a difficult time handling her mother's decline. I need to call her and support her, because I know well what she's going through.

    Of course, their mom is a dear friend of ours, having lived "two doors down," as we used refer to each other, from us for 20 years. We celebrated all of the holidays together, had a block party on July 4 every year, met at the pool for snacks, while watching her grandkids swim. Her name is Rose. Every time we called each other or met up on the street, we'd each say, "Hi Rose!" I miss her, and I love her very much and am so worried about her.

    I pray that she rallies, but we talked today with John about Rose needing one on one care now. He and his sister are exploring that, and it is so painful and sad for them.

    As for us ...

    Jon had another 5 minute seizure on Friday night. I stayed with him until 2:30, when Jim got up. He didn't fall asleep until 4:30 a.m.

    I found a small bottle of Depakote from the previous manufacturer. We decided to give Jon his mid dose, due at 7 p.m., using this manufacturer to see whether there is any difference. So far, no seizures.

    When we go back to the new manufacturer Depakote for his mid dose, we'll see whether the seizures return. If they do, then I'll know to ask for the other manufacturer. If they don't, then we know it is something else other than the manufacturer causing the seizures.

    My guess is Man-O-Pause. Jon's most horrific tonic clonics have occurred at a time of hormonal change: his first one, age 2, 13, 26, 42, and now he's approaching 49. His other life-threatening tonic clonics occurred, while in ICU, in reaction to antibiotics depleting his seizure med levels, and the administration of Reglan, against my orders.

    So, we're entering that hormone zone, where things can get funky. We have to be on our toes.

    He slept 12 hours today! So, who knows what tonight will entail?

    The scratch on his left thigh is not healing, and it is gushing like a geyser. We're doing all that we can to mitigate it, but nothing is stemming this tide for now. I even slapped some Butt Paste on it before I covered it with Optifoam, when we turned Jon today.

    Jim has been coping with RA pain and sinus headaches (as he describes them). He has an infusion on Wednesday. Next week, he has his brain MRI and full body scans. Scanxiety.

    Jim was very careful today, when we turned John, and I told John, that Jim suffered from doing too much the last time. John turned to Jim and said, "When I'm here, you let me do the heavy lifting. You have plenty of other jobs to do. We're a team."

    So, now Jonathan is clean all over, with fresh linens and wound pads. And, he got to spend time with his best bud and bro', which makes his day. I need to get a picture of the moment John walks into Jon's room. There couldn't be a bigger grin on Jon's face or sparkle in his eyes or more joy. Jon misses his brother, Michael, and he needed another brother in his life. And in walked John.

    You are all in our prayers, and we thank you for your love, support, and positive energy for us. Many prayers to all in the Florence-affected areas.

    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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  18. #150
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    How is Jon today, Rose? Sending love from my house to yours! xox
    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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