Page 1 of 5 12345 LastLast
Results 1 to 10 of 44

Thread: CN Central: NOVEMBER UPDATES

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default CN Central: NOVEMBER UPDATES


    ((((((HUGS TO ALL)))))) ~

    November is the month when we set aside one day to give thanks for our blessings. Thanksgiving generates more travel than Christmas or New Year. We want to be with our loved ones. We want to stuff ourselves with food, watch football, and listen to our Uncle's corny jokes. Crisp autumn air and crunchy fall leaves. Pumpkin, cinnamon, sweet potatoes, and all of the wonderful kitchen aromas spark memories of holidays past.

    Christmas is only a month or so away, so our thoughts turn to plans and gifts and preparations and all of the hectic chaos surrounding the holidays. We do too much. We spend too much. We work too hard.

    Every year we swear, "Never again!" As if we've learned our lesson, which we have, until the next holiday arrives.

    I am already there and fighting it! Simplify. That's my mantra. I hope it works this year!

    In this month of giving thanks, I give thanks for you, my dear friends. Please check in here with your updates, so that we can stay connected and focus our prayers to help each other.

    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.

  2. #2
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Rose, I love Thanksgiving! What a beautiful holiday in actual color and spirit. I have Thanksgiving dinner at my house for some of my family and I just love cooking an old fashioned thanksgiving dinner. It's usually a relaxing day with lots of help in the kitchen. I love everything apple. I just used up the last of my apples we picked making a gluten free apple crisp. Looking towards Christmas we always say we're scaling down but this year for sure. Kelly and Patrick both have great careers so buying for them is kin of silly. They have everything the want. Sure we'll pick out a few items but that's it. Keeping those prayers going for a really productive poop!
    Tamie, Praying that Tyler is doing better today. Waiting for a good update!
    Funnylegs, Wow now you're a mentor! That's amazing I feel great pride welling up inside just reading your post. I know how passionate you are about your work and your films. can't wait to check out your link.
    Let me second what Rose said so well. I'm very thankful for the support and prayers from our tight little group here. I've learned so much and I'm so proud to know you all. Everyone here has a super power!
    Oh I almost forgot a Kathleen update! Kathleen's cast comes off on Thursday this week! I can't believe we made it through 6 weeks. I have a new respect for parents who have a permanent wheelchair bound child or adult. It can be very exhausting. Kathleen will be so happy to get in the shower again(me too). She doesn't love the sponge baths. It doesn't help that the weather is getting a little chilly. I put a small hater on in her room but it's not quite the same as a hot shower. We are all so excited to see how her foot looks and feels when the cast comes off. I pray that getting the pin out isn't painful for her. I met with her therapists last week and we have a goo plan for her after the cast is off. She did amazing with all of this! I'm so proud of her! She had a great Halloween we went to a parade, a party and a very short Trick or Treating on our street. Carved a pumpkin and cooked some seeds.
    Mary Grace

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

    ((((((Mary Grace)))))) ~

    Thursday?! YAY!!!! That's great! Wow! See how fast 6 weeks flew by? Well, perhaps not for you, but they did for me!

    I join you in prayer that removal of the pin won't be painful for Kathleen. And she is such a trooper, and I know you are bursting with pride at how well she has managed.

    Thank you for your compassion for those of us with children, who are in wheelchairs and/or need assistance with transferring. It is exhausting. For many years, I carried Michael up and down stairs, in/out of tub, bed, chair, car, wherever he was. He weighed 110 lbs. I was working outside of the home for a period of time, dressed in a business suit and high heels often, lifting him in/out of his chair, the car, etc. And, of course, I assisted Jon, who was semi-mobile until 2000. He's 6'1" and 160 lbs. In retrospect, I don't know how I did it, because now I know that I'm too old and couldn't do it. But there were no other options then, and I was young and very determined. We do what we have to do.

    Do you have any Halloween photos to share? Would love to see them!

    I'm with you ~ I love Autumn, and I enjoyed it during our years in the Midwest, where Autumn is really a season. The colors and the scents of Autumn are comforting and warm. I baked quite a bit, when we lived there. My sour dough bread, from a 200 year old Alaskan starter, and my pecan pie were famous among our graduate student friends.

    How wonderful your Thanksgiving sounds, and the joy in your anticipation is lovely. I can picture the scene in my mind ~ a home full of love and delicious food.

    November is a special month for us, as it holds the birthdays of Jon and Michael. So, we're planning a fun day for Jon with movie and concert DVDs as his gifts, singing, hanging out, and doing whatever we can to make him happy.

    Michael's birthday is bittersweet, as we rejoice in his bliss, but we still miss him terribly. This will be his 45th birthday, the 13th birthday we have celebrated in his physical absence. But we know that he is close. He has sent the Sparrow Hawk to visit his waterfall/pond several times recently, exactly when we needed to see him.

    OUR UPDATE ~

    On the poop front ~ I gave Jon an enema today, and he did produce something, so we're holding off on the MOM. It's been 13 days, since he's had MOM, so that's an improvement for Jon. I need to check with Jon's GI about giving Jon the enema. I don't want to introduce any kind of infection or cause any kind of damage to Jon's intestines by doing this. I think it's meant to be a rescue, and not a regular procedure, but I don't know and need clarification.

    We're here, doing our thing, whatever that is, every day, and enjoying the lull from a crisis.

    For all of you, we pray for a lull from crisis too. We all need time to recover and regroup. We all need rest and quality sleep. We all need stress reduction.

    Long, deep breaths. Relax. Just for a moment, if you can just take a moment to relax, that will help you to carry on. Do that for yourself. Five minutes to just be. We deserve it, and we need it. Be good to yourself, and take care of yourself.

    Blessings and healing prayers to 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.

  4. #4
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Tomorrow is the day! In some ways it has gone fast and some days I can't remember what it was like without the cast, when she could get up and walk on her own. Yesterday I felt I really let her down... I was getting ehr lunch ready for school and she was in her bed. I heard her calling me (as she's had to do a lot over the past 6 weeks) Usually it's to get her something off her shelf, nothing that can't wait a minute so I didn't respond right away. Well then she started crying and I ran to her room. There was a bug in her bed! It may as well have been a tarantula she HATES bugs. She couldn't get away from it, I felt so awful! Although we did laugh about it together later.
    We've gotten outside a lot for walks. This week is amazingly about 70 degrees. So unusual for November. Yesterday I noticed the yard is a blanket of leaves (with lots more to come down) but it actually now smells like fall. Love it!
    It sounds like a wonderful day you have planned for Jon! I hope he's feeling 100% by then and you can all relax for the day and enjoy it. Only 13 years since Michael's passing That's not a long time. I'm sure the feelings are still so raw and as you said it makes for a bittersweet day I'm sure. It may just take another day of celebrating with Jon. Relaxing together with warm memories. I love that you have signs that he is close to you. Do you have a picture of the waterfall/pond? I feel like you posted it once before... Or maybe I have a visual because you explain things so well with words. We celebrate a lot of November birthdays.My mom, my sister, my son, sister in-law,my dad (who passed over 30 years ago), 2 nephews and one on the way in Nov. and 2 very close friends.
    Praying that Jon will be stable and need no further interventions. Keep us posted.
    Thanks you for the reminder to "breath" I do try once in a while when I get really stressed. It works! Even just a few slow deep breaths with my eyes closed brings me back.
    Mary Grace

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

    ((((((Mary Grace)))))) ~

    Taking a moment to breathe is so important. I'm so glad for you that you employ breathing to help you reduce your stress. It works for me, most of the time.

    I'm praying right now, and I'll be thinking of and praying for you and Kathleen tomorrow as the cast comes off. And that feeling of not remembering what it was like before she had the cast ~ I can relate to that so well. Now a new adventure awaits both of you, and I'm sure that all of your efforts will be successful.

    Aww ... I'm glad that you and Kathleen laughed over the bug in her bed, but I'm sure you felt guilty for not running in there. But don't, Mary Grace. You are a fantastic Mom, and Kathleen knows that.

    Your Autumn weather at 70 degrees sounds quite mild for your neck of the woods. We're going from 100+ degrees for what seemed like months to cooler, more humid temperatures. Jim said it might get down to the upper 40s tonight. That's a drastic change, and Jim and I are feeling it in our joints. Both of us are hurting more than usual from our RA. We agree that we were fed up with the HOT weather, sweating, and walking around in tanks and shorts, running our A/C all the time. And we are enjoying the cooler weather, with the exception that it seems to have affected our aging, aching joints. And now, in the mornings, we're turning on our heater. It's weird.

    Michael's Garden ~


    It seems like forever, or only yesterday, the 13 years since Michael's passing. Actually his passing is only 12 years, but his birthday after he passed counts as his 13th one since he received his wings. My avatar is Michael's Memory Garden. Here are some photos of it, a few years ago, when our lawn was lush, before the drought destroyed it:

    Screen Shot 2015-11-04 at 8.19.56 PM.jpgScreen Shot 2015-11-04 at 8.20.27 PM.jpg

    The stones on the perimeter were created by our family and friends at the reception preceding Michael's service. Each person chose a stone, selected the available paint pens, and inscribed their message on the stone, describing their image of Michael. "Inspiration." "Fighter." "Angel." "Courage." "Sweet." "Sunshine." It was so comforting to us to read these message stones and to know how loved and treasured Michael is. And that remains to this day ~ all who knew him continue to love him and remember him. Like his big brother, Michael was an Angel on Earth to all who were blessed to be near him. And now he watches over us. And not one day goes by that Jon does not speak of Michael. Not one day in 12 years.

    We certainly still miss Michael's physical presence, but we are accustomed to his spiritual connections with us, and we are comforted to know that he is still and always will be with us.

    Jon Update ~

    Today, Jon is battling an elevated heart rate in the 100s, and some lower than normal SATS. He needs a decent bowel movement, so we gave him 4 T of MOM this afternoon to get that project in the works, since the enemas and glycerin suppositories didn't do the job. His temp has remained normal. Abdomen is swelling and getting firmer.

    New lesson learned: next time, don't wait so long to give MOM. My hope was that his intestines would kick in on their own after the last jump start they had. But that did not happen. So, okay. Jon's motility is askew. And he needs intervention. At least we went about 2 weeks without giving MOM. I'm trying to avoid a dependency and then a tolerance to our methods.

    Jon's nurse will visit on Monday to change his catheter. We're also asking for a blood draw to check his AED levels, since he did have a seizure recently, after we lowered his doses. Might as well, since she will be here.

    Extra hugs to you and Kathleen tomorrow, Mary Grace and prayers on their 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.

  6. #6
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,212
    Blog Entries
    17

    Default

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

    Now, you are mentoring! How fantastic! Your films are opening so many doors, so many opportunities to connect and network, and enlightening others. I am really happy for you. You are making a difference in this world, and I applaud you, my friend!

    Being well hydrated is quite important to well functioning bowels. It's hard for the bowels to compete with the bladder, where most of the water goes, so you were very smart to consume more water to help your bowels move. With Jon, it is a delicate balance, because he has lymphedema and often fills with fluid in his gut. He is well hydrated, but he can go the other direction fairly quickly.

    And I'm sure that you know that stuffing yourself with junk food isn't going to do your bowels any good. So be sure to eat healthy food now and keep your water intake up. So glad you had a fun Halloween.
    Thanks so much Rose! It is kind of a funny feeling to suddenly be in a mentor role since as a disabled person I am usually the one being helped by others. It is a neat little role reversal I probably would not have pictured myself doing even just a year ago. Frankly I did not think I had the authority but that was just me underestimating myself. Hoping to post more film and mentoring updates soon! Thanks for the bowel advice. So far I have had no further problems since normally I have a high fiber diet with a lot of vegetables. I'm so sorry Jon has been less lucky. Michael's garden is beautiful!

    Funnylegs, Wow now you're a mentor! That's amazing I feel great pride welling up inside just reading your post. I know how passionate you are about your work and your films. can't wait to check out your link.
    Thanks so much for taking time out of your busy life to think of me and support me and read my link!!!!!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  7. #7
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Rose Thank you for the pictures! I know I've seen them before but it was really nice to see again. What a beautiful way to keep his memory alive.The stones are a beautiful idea also. It looks so serene.
    We're still enjoying very mild weather. But it will be cooling off soon especially the nights. We actually slept with the windows open last night. I find as I age I'm not loving the heat of the summer or the real cold of the winter LOL. I kind of like it "just right", spring and fall. When winter comes I tend to use a heated blanket and I LOVE my heated neck wrap. It really seems to warm my whole body except maybe my toes.
    Praying that Jon has a "Great BM" and stabilizes.
    Kathleen did amazing yesterday! We got to Shriner's about half an hour early (9:00)and they took us right in. Got the cast off and the incisions looked really good. XRays showed that it was healing as it should and the pin was ready to come out. The Dr. took the pin out without any tears or real discomfort. She then saw the orthotist and got casted for a new AFO. She went back to the Dr. and they put a short leg walking cast on. Much smaller than the first cast. Then we we saw a PT and learned how to help her walking with a walker. She is very unstable and timid about it but knowing her she'll be cruising along in no time. We'll be doing 3 PT at school and 3 outside of school so that should get her going. I met with her PT and OT at school today and went over the plan and they were very helpful and accommodating. Kathleens nurse coordinator asked me if I would mentor other parents facing surgery? Of course I would love to share any experience I can! So here's one last picture of ehr big cast with signitures, a picture of her foot 2 of the incisions, another incision is on the other side and a hole where the pin was. And finally a picture of her new cast RED this time. We go back in 2 weeks gt the cast off and get her new AFO.This hospital is amazing and even though we travell 1 1/2 hours to get there it has saved us so much time. She got a cast off had xrays, tlaked with the Dr., got casted for an AFO, got a new cast, and met with a PT all in 3 hours. WP_20151105_003.jpgWP_20151105_006.jpgWP_20151105_012.jpg

    Mary Grace

  8. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Default

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

    Never underestimate yourself! You are blossoming, finding your path, and all kinds of opportunities await you. You are breaking out of your cocoon and becoming a full fledged butterfly. Do it! Fly! Make your dreams come true! Make the dreams of others come true! Life is an adventure to be lived and a mystery to be experienced. I'm excited for you!

    I'm glad that you are eating well and taking good care of yourself. It's important to do that, regardless of the level of stress and activity in our lives. Old lady preachin' at ya, girl! Definitely look after your needs and keep yourself healthy, so that you can keep going forward to your goals.

    Michael's Garden is still beautiful, and birds still visit to bathe in his waterfall. But those photos were taken several years ago, when everything was lush, and we had verdant grass. Now our yard is dirt. The plants are struggling to keep going. When we get the opportunity, we're going to have concrete laid, where that gorgeous green grass once grew. We can't empty Michael's pond either, due to the drought, so his waterfall and pond accumulate algae and any assortment of microbes, no doubt. Jim's illness has impacted the care of our yard/Michael's garden, and I can only do so much to compensate, while I care for him and Jon.

    I'm looking forward to your updates on your films and mentoring. I'm just so happy for you that you are finding your niche. Be confident! You are doing Great 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.

  9. #9
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    Tyler is slowly improving. Still coughing and needing suctioning, but on the mend. Hope this isn't a foreshadowing of the winter to come. My two youngest grandsons are spending the night tonight and if anyone is a bug factory, those two are. Sometimes wish I could keep Tyler in a bubble, but that's not happening.

    Mary Grace, I'll bet Kathleen is loving having that big cast off. Those things really make your skin itch and hot. The walking cast is much better. My oldest had to wear one for three months. By the way, she doesn't like bugs either. Always going out and hunting down my garden spiders. The world ends if a beetle crosses her path.

    Funnylegs. Wondered if you ever met Robin on this site. She has pretty severe CP, but is the most upbeat and independent woman I have ever had the privilege to know. She has an outlook on life that just shines. You remind me of her. I think you will be a great mentor.

    Rose, how is Jim feeling? Any better? I know how hard it is to care for the needs of two. Looking back, I am amazed how well my husband did caring for me and Tyler for all those months. It isn't an easy job. Watch your back.

    I used to love Thanksgiving, but now, not so much. We always had a huge group here and I did all the cooking and baking. The numbers have drastically dwindled over the years and most have either moved away or gained Angel wings. Family dynamics have changed as well. This year will be pretty quiet. Making new traditions I guess. Do love the cooler temps and the fall colors (as much as we get in So. California anyway).
    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."

  10. #10
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,212
    Blog Entries
    17

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    Never underestimate yourself! You are blossoming, finding your path, and all kinds of opportunities await you. You are breaking out of your cocoon and becoming a full fledged butterfly. Do it! Fly! Make your dreams come true! Make the dreams of others come true! Life is an adventure to be lived and a mystery to be experienced. I'm excited for you!

    I'm glad that you are eating well and taking good care of yourself. It's important to do that, regardless of the level of stress and activity in our lives. Old lady preachin' at ya, girl! Definitely look after your needs and keep yourself healthy, so that you can keep going forward to your goals.

    Michael's Garden is still beautiful, and birds still visit to bathe in his waterfall. But those photos were taken several years ago, when everything was lush, and we had verdant grass. Now our yard is dirt. The plants are struggling to keep going. When we get the opportunity, we're going to have concrete laid, where that gorgeous green grass once grew. We can't empty Michael's pond either, due to the drought, so his waterfall and pond accumulate algae and any assortment of microbes, no doubt. Jim's illness has impacted the care of our yard/Michael's garden, and I can only do so much to compensate, while I care for him and Jon.

    I'm looking forward to your updates on your films and mentoring. I'm just so happy for you that you are finding your niche. Be confident! You are doing Great Work!

    Love & Light,

    Rose
    Thank you so so much Rose! I certainly will! I guess I just did not think I would be spreading my wings as soon as I have so it was very unexpected and certainly wonderful. And yes I am very motivated to take care of my body on all levels. Pity you can't keep up the garden as you would like but Michael is with you no matter what it looks like!

    Mary Grace, so glad the cast is off and you are going into PT sessions immediately. That will certainly help.

    Tamie, I am so glad Tyler is improving. Yes little kids are like germ festivals but you can still take good precautions. Hmm I'm not sure if I know Robin. I think I may have seen her posts in the old archive though. Thank you so much!

    Now onto some sad news, I found out a few hours ago that my math teacher has suffered a stroke and has been in the hospital for days. He has asked that we pray for him to recover. Please pray for him! Your prayers are appreciated!
    I am wondering, he is rather young(40s or 50s) so what could have caused the stroke? Is there anything you guys can suggest that I do to help him??? I want to help and support him even if it is just in a small way because he has extended acts of friendship toward me. He went to my last screening and his daughter was also interested in my work. When I saw him at the screening something didn't seem quite right. His color was bad and I thought he might just be getting a cold so I wasn't surprised when he didn't show up to work but then he kind of disappeared and I got worried so I messaged him and got the news today. He might be about to get a taste of what being disabled is like after seeing my films about disability which is a sad irony. I didn't want anything like this to happen to him! I'm worried about him! The only things I know about strokes are from the book "True Strength" by Kevin Sorbo and that my own disability, Cerebral Palsy is somewhat similar. Any suggestions would be helpful???
    Last edited by funnylegs4; 11-07-2015 at 01:20 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

Page 1 of 5 12345 LastLast

Similar Threads

  1. CN Central: October Updates
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 56
    Last Post: 11-02-2015, 07:00 PM
  2. CN Central: September Updates
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 37
    Last Post: 10-04-2015, 02:29 AM
  3. End of Summer CN Updates!
    By andromeda31 in forum Child Neurology
    Replies: 18
    Last Post: 08-23-2015, 12:22 PM
  4. December updates!
    By andromeda31 in forum Child Neurology
    Replies: 9
    Last Post: 12-23-2014, 08:07 PM
  5. Checking In With Updates!
    By sccandice in forum Aneurysm
    Replies: 6
    Last Post: 09-16-2012, 03:32 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.