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Thread: Happy Mother's Day!

  1. #11
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    Hi Everyone,
    I am so sorry that I am late to this party! Happy belated Mother's Day everyone - all dear friends!!!! Nick has been sick and my Mom has needed me a lot too. Nicholas has a chest infection - we're not sure if it's aspiration pneumonia or viral, but because he lies down on his left side most of the time (because of hip pain), his secretions pool in his left lung and his sats have been dropping. Lots of seizures too - 15 the night before last and 9 last night. Anyhow, today was a holiday in Canada (Queen Victoria's birthday!) and so our doctor office was closed. We decided to bring Nick to a walk in clinic and so we got a script for clavulin. We kept thinking that it would alleviate on its own, but today was the 12th day and he is still coughing so we decided to act. Hopefully this work. The doc wanted us to go to the ER but I think he just said that because he was intimidated by Nick's complexity. Nick's sats are really good when he's sitting up and for sure, this isn't an emergency. He's just coughing and unwell for too long now. Anyway, my Mom is quite frail now and last week she told me she was having 'dark thoughts'. She said she tried to stop eating and smoke more cigarettes, but it hadn't worked :(. I brought her a lot of new clothes and she loved them. I know she'll never wear them because she doesn't get dressed anymore, but they made her happy anyway. I had an absolutely lovely Mother's day with flowers from Jim and some from Natalie too. Nick gave me a sweet card. Sorry I have been off the grid lately and out of touch! It's been a bit busy with nick and mom. But hopefully things will get better soon. Next week we go to Wilmington for Natalie's graduation for her Master's degree. I can't believe how quickly it's gone! Now begins the job search LOL. Basically, we're all fine and I hope you all are too - Rose, I hope Jim feels better soon!!! I send you a very big hug and I LOVED my Mother's day card! Thank you so much - I was so touched. I love you all, Lisa and Mary Grace you are wonderful mothers. I look up to you both and I'm glad you had wonderful Mother's days too. Sending much love, Donna 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


  2. #12
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I am so glad to hear Jim is doing better! I think that is a "man" thing to keep their health woes to themselves. I know Brian is that way too. Good idea to make him take his vitamin at the same time as you...we try to do that at our house with our Claritin. I forgot yesterday and I think Brian did too and I am paying for that today! We usually ask each other when we're running around in the morning. When I go to the store tomorrow, I am going to buy a Mon - Sun med box so I can put mine in that so I know if I took it or not. A lot of times I get busy and then can't remember if I took it or not and I don't want to take a double dose. The funny thing is I never, ever forget Caitlin's meds! I am sure you are the same way. It is hard to think of ourselves, but like on an airplane, you have to put your oxygen mask on first before helping others! In the bodypump class I take at the gym, there is a 76 yr old guy that is there every time...and he actually takes 2 classes in a row usually! (there is a kickboxing class right before pump) Seeing people like that there motivate me to keep up on the fitness since I have also seen what happens when people give up. Hopefully when you told Jim how it affects both you & Jon when he neglects himself it will motivate him to focus on his health.

    On the $57, I am going to make him wait a bit for sure. I actually got the thought today to call up the courthouse and make sure that this bill is still not paid and then just pay it to them directly so I know that it does get paid and not go through "fat bastard". I don't want to go too long since when I got out the contract and read it, there is a thing about having a lien on our bank accounts and personal properties. Picture steam coming out of my ears! I think we were so stressed at the time, that we did not properly digest what was in this contract. It also has language about him representing us in all legal matters. I hope to have time tomorrow to call the courthouse on the bill, but I also want to draft a letter saying that he is no longer representing us, blah blah and that all monies due to him are paid in full, etc. I said to Brian that it was a good thing we did not just give him a credit card number (we paid with a check) because I suspect he would have just kept charging stuff. Let's just say, I hope the karma bus hits him head on some day!

    "woo woo"? LOL! That is as good as what we called it when we were kids, "peeper". Ugh, what was my mom thinking?! We were talking about the puberty class at the supper table and Tyler was trying to say the "v" word but couldn't get it out (too funny), so I said in a funny voice, "va-jay-jay"....lol! We all laughed! We say p*nis all the time here but don't really have much cause for talking about the "v" word. At least we can laugh about it! I just want them to feel okay asking questions to us which so far, they seem to be. When Brian's sister was pregnant there were lots of questions about how does a baby get born! The nice thing with Logan is I say, the doctors cut my belly open and took you out!

    Heading off to bed soon...hoping Caitlin feels better tomorrow. She is still battling the sinus congestion (as am I). I tried a cough/cold/decongestant on her today but I don't think it did anything for her. She has a field trip to the zoo on Wednesday. I also found out her teacher won't be coming back next year which is a bummer. She was super nice, but she had a baby this year and is going to stay home and be a SAHM. Hoping they are able to hire another one that we like as much as we liked her!

    Lisa O.


    PS: Oh Donna, I hope the medicine starts helping Nick! And I am sorry to hear your Mom is fading, that must be hard to see. (((hugs))) Congratulations to Natalie! It seems like yesterday that she just started there! Will she be moving back to Canada or staying in the US?
    Last edited by andromeda31; 05-18-2015 at 07:33 PM.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #13
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    I had a strong feeling that your absence meant that you were dealing with a bunch of issues.

    I hope the antibiotic will work to clear up Nick's chest. Did he have a chest x-ray? Blood work? How well I know about the pooling of fluids in one lung or the other, whichever one is favored. Jon used to favor his right side, now he leans to the left.

    Does Nick usually have more seizures, when he's ill? I think that's typical among our treasures here at CN. So, with the antibiotic, I'll pray that the seizures will subside.

    Would Nick tolerate percussion? Do his nurses know how to do it? It's quite easy: using a cupped hand (or we use a padded oxygen mask ~ quite perfect, actually, for the job), gently percuss the lungs on both sides from the bottom up. Front and back. On his side is best to reach the back, especially if he coughs.

    Oh, I'm so sorry to hear that your mom is weak and struggling with her thoughts. Having cared for many elders in my family, I don't think her thoughts are "dark." Her future destination is filled with Light and Bliss. At some point, Earthly life becomes a chore, or a burden. It's difficult to find the joy, until your beautiful daughter brings you a new wardrobe and her love and brilliant smile and hugs. And how your mom would love to dress up in each outfit, and she would, but she is just too weary now. It's not giving up. It's giving in. Giving in to the natural progression of aging and the awaiting reward for a life well lived.

    It is so very painful for us to watch our parents and elders age. Their vibrancy, so etched in our souls, is still there, but their physical spark is fading. My heart goes out to you, dear friend ~

    Natalie is graduating already! Wow! Time does fly!

    CONGRATULATIONS NATALIE!!

    Praying for safe travels for you and Jim, healing for Nick and your mom, and for a great job in the wings for Natalie!

    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. #14
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    Happy Mother's Day to all you CN mamas! I had a very nice mother's day and bought my mom roses. We also visited friends.

    Rose, I'm sorry mother's day is hard for you and that Jim now has had health issues. I plan to have children someday and work with my body everyday so I can be as healthy as possible for my future kids. I got out of jury duty with a dr's note once explaining that my spasticity would lead to pain if I sat on a jury. So you can get out of it.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  5. #15

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    Hi all

    Been awhile so I thought I'd pop in! Happy Mother's Day to you all.

    My poor mum is having a rough time at the moment. About 3 weeks ago, she fell when trying to reach something in the shower and broke her ankle to the point where she had to have surgery. She had to wait 6 days to have surgery on it because more urgent cases kept coming up. And now she has it in a cast. But because of her MS, she cannot use crutches. So she has been in the rehabilitation part of the hospital trying to learn how to transfer to and from a wheelchair without weight bearing on her one leg, etc. And my poor dad has been flying backwards and forwards because he works in NZ now (she is still in Australia). And my poor younger sister is having to spend most of the time at home by herself, when my dad's not there. It's quite tough for everyone, and I can't really do anything except get on with my own life here.

    Speaking of which, I had my graduation ceremony about a month ago. It was a fabulous day. My parents were there and I celebrated with a big group of friends. I am about 2 weeks away from being eligible to be admitted to the bar. At the moment, we are doing a module on court trials and have to participate in a number of mock cases as prosecution or defence. It is certainly challenging but I am enjoying it. The only thing I am not enjoying is having to rely on people to help me in and out the building still. I wrote another email after the last onsite module but they never replied. It makes me so angry, but I am stuck with it realistically. I could take them to the human rights commission but realistically a case would take at least a year to go through, which is useless to me. Gotta love the justice system, eh? 2 weeks after my course I start work full time which I am nervous about but looking forward to. Can't believe I actually have a job! I won't be admitted to the bar until at least the end of October so until then I won't be practicing but it is certainly a distinct possibility now!

    I promise I won't be a scumbag lawyer though. The clients where I will be working don't pay - we offer free legal help to those most in need. I really like knowing that I am helping people who really need it.
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

  6. #16
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    Hi Everyone,
    Rose, I am so sorry that Jim isn't well and is struggling with so many issues - you must be so worried on so so many levels! I wonder if you could get him a C=pap machine just to try as a rental? Maybe call the doctor's office and speak to him yourself? Will he take phone appointments? Nick has severe obstructive and central apnea but wear the mask due to sensory issues. I sure know a lot about apnea and you are right, it wreaks havoc on the body and mind. Gives headaches, it's exhausting, causes poor response times over time... the list goes on. I hope you can get this fixed soon!
    Nick was nauseated yesterday on the antibiotic so we got him some probiotics (he won't eat yogurt or anything else for that matter right now) - we're running his feeds at low speed. He's got diarrhea from the antibiotic too so we're lowering the dose of peglyte. He's on six pages of meds poor guy, so his poor tummy must be in revolt with the clavulin. Hopefully it will knock out the chest infection though. It's been going on too long and he's so tired from the seizures. We have to wait to June 19th for a neuro appt. but if he continues to have bad nights, we'll call his office and see what he says (so hard to get specialists' attention between appointments!!!!). Anyway.. Rose, thank you so much for your kind words about my Mom. You are right, she's had enough and she's so tired - I saw what energy it took her to put a dress over her head. She was out of breath and just exhausted - no way for doing up a zipper in the back. But she was happy to have new clothes anyway - she did try on one organza shift dress with a really pretty jacket over top that I bought her and she looked so great - it was just a perfect dress for her (not too hot!) and even with her hair all sticking up from bed, she looked great. Bless her. Still waiting for a report on Nick from last night - his nurses are really great and email us every morning about his night. Hopefully it wasn't too bad. If the diarrhea and nausea was bad, we'll have to change from clavulin to amoxicillin - it's a little easier on the gut. But we'll continue on the probiotics for sure, of course. Thinking of you all and sending much much love, 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


  7. #17
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Thank you for your good thoughts. I did get out of Jury Duty. It just took me 3 weeks, two phone calls, an email to the court and to my county supervisor to be excused. And for 30+ years, I was always excused. But now it's all done on the computer, and there is no option to provide an explanation for the request to be excused. Here's an example of where technology failed.

    ((((((Erin)))))) ~

    I'm so sorry about your mother's ankle and surgery, and the stress all of this is creating for her and your family. Healing prayers are on their way.

    Congratulations to you on your graduation! So excited about your future, and so sorry that the accommodations are still lacking miserably, and that the wheels turn so slowly. But this situation needs to be corrected, if not for you, for all other folks who need accommodation now and in the future.

    We know you won't be a scumbag lawyer or, as Lisa calls her solicitor, Fat Bastard. I'm sure that we're all confident that you will be a brilliant and compassionate lawyer.

    Take care of yourself and try not to work too hard. Keep us posted.

    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.

  8. #18
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    I'm so sorry to hear that Nick is now having diarrhea! Just adding insult to injury there, isn't it? Awww ... bless his heart. Perhaps some extra water would help to fill in for the slower feeds and keep him hydrated. Just a thought. Healing prayers are on their way.

    I'm happy to hear that your mom did try on some of the clothes, and even with her exhaustion, it was a joyful experience. She was with you, and she was wearing a cool new outfit, and she was rocking it, even with her bed hair.

    It's so difficult, Donna. I know. I truly understand, and my heart is one with yours.

    Please keep us updated ~ 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.

  9. #19
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Thank you for your good thoughts. I did get out of Jury Duty. It just took me 3 weeks, two phone calls, an email to the court and to my county supervisor to be excused. And for 30+ years, I was always excused. But now it's all done on the computer, and there is no option to provide an explanation for the request to be excused. Here's an example of where technology failed.

    ((((((Erin)))))) ~

    I'm so sorry about your mother's ankle and surgery, and the stress all of this is creating for her and your family. Healing prayers are on their way.

    Congratulations to you on your graduation! So excited about your future, and so sorry that the accommodations are still lacking miserably, and that the wheels turn so slowly. But this situation needs to be corrected, if not for you, for all other folks who need accommodation now and in the future.

    We know you won't be a scumbag lawyer or, as Lisa calls her solicitor, Fat Bastard. I'm sure that we're all confident that you will be a brilliant and compassionate lawyer.

    Take care of yourself and try not to work too hard. Keep us posted.

    Love & Light,

    Rose
    Hi Rose, I got out of the Jury Duty in person. I have never tried on a computer. Glad you got out of it. You're welcome!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #20
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    Hey Erin,
    So relieved you are not going to be a scumbag lawyer, phew! Now I can sleep LOL. Go girl and pick your battles - those you will win in great style. The current accessibility challenges are a gigantic pain but as you say, not winnable in a helpful and timely way for you, so maybe save that battle for later. I'm so sorry your Mom broke her ankle, boy that must be so hard on everyone at home. So crappy. Good luck in your first job!!!! You'll have all of us here rooting for you, that's for sure. Sending love and a hug to you, 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


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