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Thread: CN Central Check In: 2015

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    Smile CN Central Check In: 2015

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

    Did you hear that?!

    A pin dropped!!



    Now that I have your attention ~ how about stopping by here with an update?

    How were your holidays? How are you? How are your children and family? What's new? Are all of your decorations down and put away? Are you fending off flu, viruses, and colds? What is happening in your world?

    Here's our update ~

    All is well, essentially. We're healthy, as far as we know, and our holidays were quiet, relaxing and AT HOME. Our best gift was Jon returning to continuous urination, after several months of holding his urine for up to 16 hours. It was all about the placement of the catheter.

    Jon needs a new G Tube, so I'll be calling his GI next week so that they can order the tube and schedule a home visit. The lifetime of his G tubes seems to be diminishing. The first one was good for nearly 2 years, the next for 18 months, the next for a year, and this one is going over after 9 months. I am hoping Jon's GI can explain this phenomena to us. What happens if we get down to needing a new G tube every month? That just doesn't seem right.

    We are planning to implement a long list of home improvements this year, and we are praying for stability to accomplish the overwhelming tasks before us. In the process of planning, I'm factoring in, "what could go wrong?' and "how much time will that require?" ~ and it's a tad bit disconcerting to ponder.

    It's onward and upward in 2015! That's my mantra! Progress! YAY!

    And, after I contemplate all that awaits us, and I think about what I need to do TODAY, and just TODAY, I end up here ~



    Please join me ~ Your lounge chair and smoothie are waiting for you ~

    I know you need it as much as I do ~ c'mon over for a moment ~



    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 Dear Rose, I just felt like a smoothie or a pina colada and your company!!! :) We had a good holiday even though Nick's pain was not so good. The great news though is that he is much better! The physiatrist suggested that we give some oral baclofen (it's already running in his spinal cord pump) and the first time we tried it, he had a terrible allergic reaction. But we questioned whether the reaction was caused by the baclofen so we brought Nick to the doctor's office and give him a bit and watched - he didn't react! We have found that it's really working in combination with the morphine and he is so much better! Nick even went to a hockey game and had a great time, no nighttime seizures afterwards either. So all is well for the moment on that score :) I've been working hard on a government report on home and community care. It's work I love - so interesting, but I'm obsessing a bit about it now that it's almost due. Hopefully it will create some good change. Jim and I went to a wonderful move, The Imitation Game! When it comes out on DVD, you must see it, you, Jim and Jon will all love it.

    All is calm on the Northern front :) and that's a good thing - no complaints and bring on the beach and the smoothies!!! :) 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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    We started Tyler on Charlottes Web this week! Starting at a low dose and working our way up. No side effects or ill effects from the cannabis. Tyler has been infection free for two weeks now. Yippee. Perfect time to start this new treatment while Tyler is feeling OK. Still on antibiotics and probably will be forever, but for the first time since September, the UTI has not come back. What a huge relief.

    Glad to see Nick and Jon are doing well too. Nice start to the New Year.
    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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    ((((((Donna)))))) ~

    Here you go, my darling ~ a smoothie or pina colada ~ your choice ~



    Excellent news that the oral Baclofen is helping Nick! Oh, I'm so happy that Nick went to a game and didn't suffer pain or seizures. May it continue to be so for him.

    If anything can create change, I have no doubt that your report will! Go Donna!! Thank you for advocating and being at the forefront of change for persons with disabilities.

    Change is happening in our government with the new Congress, and none of it bodes well for people with disabilities or the caregivers. Please see tic chic's post in the Social Security forum about proposed cuts to SSDI:

    http://www.braintalkcommunities.org/...r-of-Being-Cut

    In the IHSS program, caregivers were finally going to be paid overtime for providing care for more than 40 hrs/week. (That would be us ~ Jon has the maximum of 283 hrs/mo for care ~ IHSS is not for 24 hr care.) For 2 months we've been receiving forms to sign, and workshops have been scheduled for caregivers to learn about claiming OT and travel expenses. A website was created, and I watched a 30 minute video training in the new IHSS system/timesheets. It's quite confusing to me, so I can imagine it is for other caregivers, most of whom speak English as a second language. But, even translated, it is confusing.

    I called the county about an alert notice I received regarding forms being filed, and they had no record of the forms I signed and mailed in December. So, a new batch of forms was sent to me, but they aren't the same forms I completed in December.

    After all of this, I opened the envelope for the new time sheet today to find this notice: A US District Court in D.C. stopped the federal overtime pay on 12/31/14!!! All of this for nothing! NO OVERTIME PAY for IHSS CAREGIVERS!

    All of this is signaling, with a huge red flag, that the government is launching an assault on our most vulnerable citizens and their caregivers with impunity. By vulnerable citizens, I include Seniors (raising my hand). We're in a handbasket on our way to hell. Thanks to our Multimillionaire Congress.

    Let's see if I can put it simply:

    In December, we thought that we were going to receive an income increase of time and a half overtime pay for 92 hours per month.

    In January, we found out that was a hoax.

    And the beat goes on, my friend. It has been this way for us for 45 years, and it is not getting better. In fact, we're going backward.

    I know exactly where my letters and emails to my Congressman end up: the trash. He doesn't represent me, my son, or my family. He never has and never will. He knows I don't vote for him, so why should he care what my family needs? He doesn't need to garner my vote, because he keeps being re-elected by the moneyed power makers for the past three decades. He is in their pocket for perpetuity.

    And on line petitions seem like a great idea, but they don't work. And notice that every petition has small print telling you that you'll be hooked up to their website for updates. That means you'll be bombarded with offers.

    By now it should be obvious that Congress is going to do whatever they want to do or are paid to do by lobbyists, while our complaints are ignored. Am I too cynical? I don't think so.

    Legislators love to point to "fraud" in social programs to justify their desecration of services to people in need. All of those folks who are faking being disabled, and caregivers who are lying about providing care to program recipients ... which typically works out to be less than 2% of the population. It's a limp excuse to cut benefits and destroy lives.

    I am hoarse from years and years of screaming over the din of clinking coins. I am weary of begging for "consideration." My fingers cramp when I have to type "Honorable" in front of a legislator's name. I am so done. I fought hard when I was young, so that it wouldn't be this way today. I am smoldering, but I have no fire left.

    That is what we're up against here. I pray that your legislators have compassion and think and act with their minds and hearts and not their wallets and delusions of grandeur. I know that your presentation will be stellar in all regards and worthy of full implementation. So, I'll pray that they hear, they listen, and they understand.

    Have another smoothie ~



    I apologize for my rant. I'm just so fed up right now. I'm too old and too tired to be dealing with all of this nonsense.

    And Jon's had a weird swelling on his cheek, possibly his gum, and has been drooling excessively, so I'm trying to figure out what it is and what to do to help him. We think we have it under control, using a warm compress on his cheek, and swabbing his gums with warm salt water. Swelling has come down. It's just always something ...

    Let's have a couple more ~



    Okay ~ feeling better now.

    Sending love to you ~

    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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    ((((((Tamie)))))) ~

    What wonderful news that Tyler is infection free and beginning the MMJ! At last! HAPPY NEW YEAR TO YOU ALL!

    Was there any decision about the kidney stones as the infection culprit? Have the gagging and retching subsided?

    Lots of prayers and positive energy on the way to Tyler and you and your husband that the MMJ works well and that the antibiotics keep infection at bay.

    Indeed, a great way to start the new year!

    Here's your smoothie, come put your feet up, and sit a spell ~

    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 everyone

    Nice to read updates from you all. I'm so excited to read that Tyler is trailing cannabis oil! I really hope it helps him!

    Rose, reading your post about the dramas you have been confronted with, with social security confirms that the social security system is universally broken. I have been having issues myself with the social security system here. First, there's the ridiculousness of the actual policies. The one I have been having issues relates to my travel overseas in that about 18 months ago, it was made law that people in receipt of social security pensions are only allowed to travel overseas and be paid for up to 28 days in a 52 week period. Beyond 28 days in that time, one does not get paid for the period they are away. Because my parents live overseas, I have been affected by this policy, and I have gone over the 28 day mark which has meant that the last few trips, I have not been paid, and even though I disagree with the policy, I accepted that was the reality.

    But I calculated that for this trip just gone, the 28 days should have rolled over again so I was expecting to be paid for the full period, and I actually stopped myself from going for 6 months to ensure that this was the case. However, a series of mistakes on the part of call centre staff who do not seem to know how the policy works meant that I was not. SO that added a layer of stress to my trip because I kept having to call (from overseas) to ask what was going on and no one really knew. I went into the local office when I got back and discussed it with someone in person, and they agreed it was their mistake and said that I would be backpaid for the payments I was entitled to. However, they didn't end up paying me the amount they told me they would and no one at the call centre can really tell me why so I have had to make another appt for this Friday... as if I don't have anything else to do with my time.

    The incompetence of the staff they employ astounds me. For example, I had one guy on the phone try to tell me that 18 Dec to 11 January was more than 28 days and then spent about 2 minutes trying to work it out when I told him that that wasn't correct. Then, when I went into the office last week, the case manager I dealt with told me there were seemingly no gaps in my payments and in an attempt to prove so to me, printed out a sheet of paper with the supposed payments made on it. I noticed that the payments were different from what I usually receive and then noticed the account number printed was also different. He was showing me SOMEONE ELSE'S payment details!!! And when I pointed this out to him, he did not even say a word... just silently ripped the paper up and told me he was going to speak to his manager. No apology for acting like I was lying about not being paid, no nothing. Currently in the process of writing a letter complaining about this experience.

    Another issue I am having is with a home help agency. After about 3 months of being passed around different services and unnecessary amount of paperwork, I secured funding for 1 hour/week cleaning to be provided by an agency. But they are so inflexible that the person they have allocated me can only come on Mondays at a specific time, and if that wasn't bad enough, they have not shown up this week or last week for various reasons. Basically they are a hindrance, not a help. So I have decided that I am going to just employ someone myself every fortnight or so.

    On the plus side, dealing with all this has given me a personal insight into the issues a lot of my current and future clients at work will face and will no doubt help me be a better advocate and lawyer.

    Other than dealing with that stuff, I found out my thyroid is no longer working properly and so am now on thyroxine to increase my levels. I suspected that they were low because I have been feeling very lethargic lately, but encouragingly, I think they are helping already.

    Law-wise, I start my legal professionals course next week which will see me admitted to the bar at the end of it. This is an 18 week course designed to teach and test your practical skills as a future lawyer. It is mostly online with two two-week blocks on-site, but yet another issue I have to confront is that the building the organisation is using is not wheelchair accessible... And what's really irritating to me is that the "Disability Liason" person is actually just a recruitment person with Disability tagged onto her role when someone who identifies as having one enrols. So basically she has no knowledge or experience of disability at all, as evidenced by her suggestion that my chair be lifted up the stairs and a statement that the bathroom is "accessible but small" (i.e. no steps to get into it but no room for a wheelchair...). Trying to think of solutions, but get so tired of being made to feel like it is me that is the problem, and of the lack of awareness in general.

    Gosh, what a rant... Welcome to being an adult, I guess. Better put something stronger than juice in that smoothie!!!!
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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    Thanks Rose for waking us up... I love reading the updates. It sounds like a pretty good start to 2015.

    We're still just in a "waiting mode". Waiting for Kathleen's MRI. Waiting to hear from the surgeon for me. I did get something accomplished this past weekend. My colonoscopy. Sunday prep. Monday procedure which went very well and all clear for 5 years!
    I hear you Rose about the projects around the house. We have a growing list that never seems to get done.

    It's that time of year again that we're planning Kathleen's birthday. I just can't believe it's her 18th!!! We're having a pretty big surprise party. She loves surprise parties. Our theme this year is a 50's party. I'm planning "diner" type food burgers, fries hot dogs, onion rings, etc... Ice cream sundae bar... Of course a hoola hoop contest and 50's dress optional with a prize for the best.
    So nice to read everyones update!
    Mary Grace

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    Forgot to mention that Boston Children's contacted us about Tyler's gene sequencing and his neuro called last night to inform us of the preliminary findings. His Ohtahara was caused by a mutation in the SCN2A gene. Oddly enough, it is a new mutation not found before (of course). They want more testing done to confirm because it is so unusual. Seeing Tyler's neuro next week and will get a complete copy of the study. Will make no difference to Tyler, but finding out our daughter does not carry the gene is huge for Tyler's siblings. We are waiting for his dad to give a sample (something he has now promised 3 times and never followed through). If he ever does contribute his blood and the findings are negative for him as well, it would mean the mutation was spontaneous, but not hereditary.
    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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    ((((((Erin)))))) ~

    You need two smoothies to start with, and the cabana boy will add whatever you'd like to it!

    No offense to New Zealand, but what century are they in there? Carry your wheelchair upstairs?

    Do they employ husky weight lifters just for that purpose? Or are you expected to bring your own posse?

    Does your university have a wrestling team? You could ask a few of them to help you out to make a point. Show up with the wrestling team and local media. "Here's how I access this building to complete my law degree."

    Put your advocacy skills to work and get an ADA law passed in NZ! Every public place should be accessible. And you should never, ever, ever be made to feel like it's your problem, or that you are creating a "situation" or causing an imposition to access a public facility.

    The "Disability Liaison" needs educating and enlightenment. You're just the gal to help her obtain it.

    The ineptitude of the social security personnel is pathetic. I hope you have the names of these people, so that you can include them in your complaint. I hope your complaint is taken quite seriously too. If not now, it will be when you have Esq. at the end of your name!

    Sorry to hear that your thyroid is on the fritz again, and I'll pray that the thyroxine increases your levels and that you have more energy to tackle the big projects before you.

    Indeed, all of your experiences now will benefit you in representing clients with disabilities. You know first hand what discrimination is, and your personal insight will be a compelling aspect in your career.

    You Go Girl!

    And another smoothie ~ just sit back and chill for a bit ~

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

    YAY for your colon!

    Celebration Smoothie:

    Hurry up and wait ... frustrating! But, we'll wait here, so that will make it a bit better



    Kathleen's 18th birthday!!!



    Love the 50s theme!! I had a poodle skirt, and a fur blouse collar with fake pearls! Bobby sox, black and white saddle shoes or patented leather Mary Janes. Yikes! I'm old!!! I remember the small green Coke bottles. The original Pepsi bottles and logo. Wish I still had my 45s and 78s and 33 1/3 records! Of course, I don't have a record player, so they wouldn't do much for me! I had hoola hoops, but I could never get the hang of it!

    For music, you might be able to find some DVDs and CDs of Doo Wop Music. And maybe some DVDs of American Bandstand. Might be a bit pricey but could be a fun addition to the festivities.

    Oh, and don't forget The King

    Screen Shot 2015-01-20 at 8.07.28 PM.jpg

    Wish I could join you!

    Hope things get moving for you soon with Kathleen's MRI and your test results/surgery.

    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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