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Thread: CN Central: DECEMBER UPDATES

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    Thumbs up CN Central: DECEMBER UPDATES


    HAPPY HOLIDAYS

    As promised, here's the new update thread for December. Is everyone in the holiday mode?

    I managed to remove and put away all of our Fall/Halloween decorations and began putting up our Christmas decorations today. I just keep reminding myself that I can't do it all in one day. I take frequent breaks to sit down and watch whatever Jon is watching!

    Jon is fine, but he isn't pooping. Big surprise there, eh? He's enjoyed observing the transformation of his room today. Finally took down his Happy Birthday sign.

    Next week, Jon's Podiatry Gals and his nurse will visit, so I want to have their gifts wrapped and ready to give. I think that I have it covered! I think ... still waiting on some deliveries. My goal is to have all of our Christmas decorations on display then too, since they are basically our only visitors during the holidays.

    Looking forward to your updates and sending healthy, happy holiday energy your 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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    I'm sorry Jon is still not pooping Rose! At least he gets a visit from the ladies! :) I'm sure your holiday decorations look great!

    As you may have seen in the other thread my teacher with the stroke had a hard day…see here
    Thanks Rose! He's still doing well but he appears to have had a rough day today. He had a bit of trouble with the window when he wanted to close it so another student had to do it. His finger strength wasn't good. He moved slower than yesterday. Then he had to keep sitting to rest. He was rather quiet and I kept hearing him make a sighing type of noise as if he was trying to use deep breathing to control his symptoms as I was taught to do with my CP. At the end he looked really uncomfortable and it was hard to watch him struggle. At the very end the symptoms seem to hit him hard. He looked up at the ceiling and I could tell by watching his eyes something was really bothering him. Then he closed his eyes as he tried to chit chat with me. Perhaps he had seen me checking on him out of the corner of my eye. Once the other students were out of earshot he said "I'm dizzy". I asked him if he wanted help but he said he just wanted to go back to his office and rest. I was worried but I just followed his lead so he wouldn't get more stressed. Perhaps he was embarrassed by the dizzy spell?? It seemed like he only wanted me to know. Is there a way to help him not feel embarrassed or scared? Let him know we won't judge him? I told him to do whatever he had to do to feel comfortable in my messages but it's hard for him to not have his body/brain back to "normal". Now I know his eye movements that I saw were his brain making the room spin. His dizzy spells appear to come and go just like how Kevin Sorbo described in his book. Sorbo said the dizziness was the most intense effect of his strokes and the seems to be true for my teacher unfortunately. I knew my teacher's symptoms would go deeper than what my classmates and I could see. Is there anything that could help with the dizziness???? He said I could send him links etc as he tries to figure it all out i.e extent of how this will effect his life. He is starting to realize to much activity drains him. He is so strong about this attitude wise, stronger than he knows! I'm learning so much!
    After he had that intense day I think he is coming to grips with his disability because I saw him taking care of his own needs more. He rests whenever he can in class and asked us to leave early today so he could head home early to rest. We were more than happy to oblige him. I'm proud of him for finding a way to balance our needs and his. He believes the dizzy spells are partly triggered from exhaustion.

    In terms of the holidays I am simply trying to make sure all my gifts to the special people in my life will be sent or given to them on time LOL. Christmas decor goes up much later in the month for us. :) I know its getting close to Christmas because my cold whether muscle tension is back LOL. The level of tension gets better/lessens in severity every year so that's good enough for me. :)
    Last edited by funnylegs4; 12-03-2015 at 10:22 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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    ((((((HUGS TO ALL)))))) ~

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

    It sounds like your teacher is coming to grips with his limitations, which is a good thing. Just a caution, depression can often accompany a stroke or heart attack. Just keep doing what you're doing, supporting him, communicating with him, loving him.

    I do pray that your pain and discomfort from the cold weather doesn't materialize into anything and abates. May you be comfortable and relaxed.

    The holidays become more stressful for me every year, as I try to do as you do, get gifts to folks on time. I have to be ready for this coming week, as Jon's Podiatry Gals and his Nurse are visiting. So, I need to have their presents ready to give to them, as well as have the decorations up, so that they can enjoy them, as they are the only guests we'll have during the season, and get the house clean spic and span! Frankly, I'm pretty doggone tired and would prefer not to be doing any of this right now.

    OUR UPDATE

    Jon has had insomnia for several days now, and he only slept for 1 3/4 hours today. Of course, this is concerning, since sleep deprivation often leads to seizures for Jon. So we're keeping him well medicated.

    Yesterday's full dose of MOM has not produced any results today. I deferred an enema to tomorrow. Why? I don't want to deplete any of the extra seizure meds he is holding due to constipation, so as to ward off seizures. And I'm just guessing. I truly don't know.

    Jon's vitals are excellent, and he seems fine, but he really needs to get some decent sleep. As do we all. We are reluctant to give him Ativan for sleep, as that seems to take days to wear off for him, and usually his SATS tank.

    Jim hasn't been feeling well for awhile. Fatigue but difficulty sleeping, RA pain, lack of appetite, coughing. Today, he received a DMV notice that he has to appear at the DMV to renew his driver's license. He has to take an eye test and be fingerprinted and photographed. I pray he passes the eye test, since he has a cataract in his left eye, and I also pray he doesn't pick up any viruses standing in line in a crowded DMV office during flu/cold season.

    Not the perkiest update for the season, but it's all I've got for now ~

    Holiday Blessings on all ~

    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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    Hope Jon gets some sleep soon!

    Probably one of the most significant events in my life taking place this week (there's been a few this year!) - I get admitted to the bar as a barrister and solicitor of the High Court of NZ! A six year long journey comes to a close. I don't actually need to be a lawyer for my current job but I want to keep my options open. My parents and sister are coming over for the occasion, as well as a couple of friends from out of town and probably some work colleagues.

    Then the day after I fly out of town to see two of my favourite ever music artists - Ed Sheeran and Passenger - live in concert! Then to work for a couple of weeks and then Christmas. This year really has gone fast.
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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    Hi Everyone,
    Rose, I hope Jim passes the eye test and that Jon does one of his magical turnarounds and begins to sleep and poop again! Funnylegs4, I hope your professor is being kind to himself as you are to him. My father had a series of strokes. It's difficult, but many people do really well in recovery. Hopefully he will be one of those.

    We have finished decorating the outside of our house now and the bird feeders outside the window are filled - we have lots of squirrels and birds to amuse us! This morning we'll go buy our tree and yesterday we went to a school fair and got a live wreath for the front door. We are getting ready for Natalie to return home from the States on December 22 (happy Mama)! She has been flown for a job interview from Philly to Milwaukee (Lisa Ott! - my daughter might be in your neck of the woods!) and she'll fly from Milwaukee to Ottawa on the 22nd. The job is a fellowship at the Chipstone Centre for material culture and she would be doing research there for one year. Nick is doing really well these and apart from some staffing issues we've had (one of his permanent day staff gave her notice so we are working half time on an ad hoc basis till someone else can be found). But they are all trained on Nick and they're very good so it's not too bad. We are all looking forward to Christmas! I am working away on my book and trying to get back to dance class after a pinched nerve in my neck has kept me away. Sending much love to all my very dear CN friends xoxox
    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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    Tyler is 21 today. Hard to believe our sweet little boy is suddenly a man. Where have the years gone? It will be a quiet celebration, but one full of joy. This is the day that the Lord has made, let us rejoice and be glad in it.

    Merry Christmas, Happy Holidays, peace and joy, to all of the families here.
    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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    Happy 21st to Tyler! It's hard to believe your little boy is now a young man. So glad you are having a lovely day! Please give a gentle hug to Tyler from me and my family. May his next year be a healthy one full of comfort and joy! xo
    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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    ((((((HUGS TO ALL)))))) ~

    CONGRATULATIONS ERIN!

    How exciting! And how wonderful that your family and friends will be there to celebrate your accomplishments! Then off you go to a concert ~ sounds like a great week. I'm so happy for you that all is going well in your world. May it continue to be so.

    Donna ~ I'll pray for safe travels for Natalie and that she receives the fellowship. What a terrific opportunity for her. Does she plan to remain in the U.S.? I know that her beau lives here, which is probably a pretty compelling reason for her to stay.

    Music to my ears that Nick is well and feeling better now. I gather that he did okay with the pneumonia vaccine? I'm relieved on his behalf (and yours).

    I'm glad that your pinched nerve is improved so that you can return to your dance class (is this Zumba?). Enjoy and be careful!

    HAPPY 21ST BIRTHDAY TYLER!!

    Tamie ~

    What an incredible milestone for Tyler! He must have been 5 or 6, when I first met you on the old G Tube list serv from Australia.

    I hope that Tyler had a peaceful and healthy day. How is he? Is the UTI situation resolved now? Please keep us updated.

    OUR UPDATE

    More insomnia for Jon. He was awake until 8:30 this morning, and only slept for about 2 1/2 hours. We have no idea why this happens, but it's been an issue for him occasionally for many years. We just have to ride it out, until he crashes. Tonight, I'm going to give him 1/2 an Ativan, with the prayer that it is enough to take the edge off, so that he can sleep, but not enough to make him dopey for the next couple of days.

    Today's enema was successful, but the production was minimal, compared to what he needs to and should be producing. I won't give him another enema, as his nurse cautioned not to wash the nutrients out of his bowels, since we're going directly into the intestines with his colostomy. So, I'm hoping that we evacuated some boulders, which may have been obstructing the exit and that more will follow soon.

    Jim went to bed about 11 a.m. to catch up on his rest and sleep, expecting Jon to sleep for a few more hours.

    So, all of the things on my To Do list today did not get done. Tomorrow, I have to clean like a whirling dervish and wrap the Podiatry Gals' presents for their visit on Tuesday. But, I decided that I'm not going to exhaust myself and overdo, because, well, I can't. I'm old, I'm tired, and my bones hurt. I may have had 3 hours of sleep last night. I need more. Jim needs more. Jon definitely needs more.

    I just want everyone to be healthy and home for the holidays, and all of the rest of the stress associated with the season just has to be reduced for me. Much of the "Ho Ho Ho" has been taken out of the holidays for me, as I get older.

    Our house used to look like the Christmas Store exploded in it, with every room, including bathrooms, decorated. Now, Jim can't climb, reach and lift the boxes off the garage rafters for me. Even if he could, I don't have the time or the energy to put everything out. Since we don't entertain any longer, what's the point?

    I'm hoping that our Godchildren will visit us someday and take away whatever they want among our many boxes of decorations. We do have some cool stuff, fun stuff, heritage stuff. Every Christmas now, it remains in the boxes in the garage. It should be used and enjoyed by someone.

    Now, it's 8 p.m. and Jim has returned to bed for a few hours. He told me to "relax." Sure. I have another 5 hours at least of caring for Jon, watching for seizures, encouraging him to go to sleep, and praying that he finally will. I'll be doing a ton of "relaxing."

    Here's where I long to be for just a moment ~



    With a few of these at my disposal ~



    Please join me ~

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

    I'm back. Jon's SATS are dropping to the low 80s, and he's been coughing via his trache green, thick mucous. Temp is normal. Urine output is excellent. Very small BM today, but at least it was something.

    I'm not giving Ativan, because his SATS are low, and he's clearly congested.

    I've emailed his nurse, who will be visiting this week to change Jon's catheter, but she may be here earlier than we expected due to Jon's condition tonight. I'm asking for a blood draw on his Dilantin and Depakote, a CBC, a UA, and a Sputum Sample.

    I pray that we aren't brewing a crisis. I don't think any of us are up to it right now, but we'll trudge through, as always.

    I wish I had some cheerful news. I really do.

    Love to you all ~

    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, I'm so sorry Jon's stats are so low! :( I hope it's not a huge infection or something. At least he is peeing which will allow his body to clear out some stuff in his system that maybe should not be in there. My professor continues to do well. Now that he has allowed myself to slow down he has more energy and his symptoms seem generally under his control. I did find out that the fumbling and dropping of objects that he does are a direct result of the stroke. I believe the left side of his brain was damaged(there might be further damage in other areas we can't see) so his right side is the side with the most sensory issues. So he can't feel, say, an object in his right hand and will drop it from time to time. Since my classmates and I had no idea about whether or not this was a stroke symptom we completely ignored it. He seems to appreciate that since it saved him a bit of embarrassment. I completely know where you are coming from in terms of depression, and I sent him a message telling him to be patient with his body and not let the bad days frustrate him too much. I was relieved when he seemed to take this in. We told him we loved him. His attitude when he's around us post stroke is very light hearted and his beautiful smile shines a bright light on all of us. Glad you liked my blog about him! No need to worry, my Cerebral Palsy is not painful as long as I take my health supplement that controls swelling in my knee joints brought on by the slight misalignment of my body. As my body alignment improves so does the tension. All the tension feels like is a pull in my hip flexers. No big deal, especially compared to what my professor is going through.

    Donna, thank you for your feedback on my blog post! I will reply to you fully in that thread later in that regard. I hope so too! His energy, strength and stamina are slowly returning,he was very weak at first since he literality almost died, and I'm worried he will expect to much of himself too early and suffer more dizzy spells and possible complications. Since he has diabetes he is apparently at a much higher risk for seizures and more strokes. Remind me never to get diabetes. He is doing way better than what I read a thalamus stroke is supposed to be like so I'm so thrilled for him for getting as far as he has so quickly! I just wish there was something more that could be done to help when he gets dizzy. Any ideas??? I see his eyes roll back and side to side when he gets dizzy so I wonder if it's some kind of weird partial seizure???? I hope not. He remains fully conscious when his eyes roll.

    Tamie, HAPPY BELATED BIRTHDAY TO TYLER!!!! How wonderful!!! 21 is a great age! Sorry for my delay on my birthday wishes.

    CPchick, CONGRATULATIONS! Impressive!
    Last edited by funnylegs4; 12-07-2015 at 05:52 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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