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Author Topic: I never thought I'd b posting anything like this...  (Read 9199 times)

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CheffoJeffo

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Re: I never thot I'd b posting anything like this...
« Reply #40 on: October 12, 2012, 07:29:35 am »
For the OP: An article about the SSAH funding I mentioned earlier from today's Toronto Star.
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lilshawn

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Re: I never thot I'd b posting anything like this...
« Reply #41 on: October 12, 2012, 02:46:56 pm »
For the OP: An article about the SSAH funding I mentioned earlier from today's Toronto Star.

I'm kinda in the same boat with my own daughter with CP. She's too old for some funding options, and too young for others. Her disability isn't bad enough for this kind of funding....but too much for that type. It's really an issue with their "Definition of (a particular) disability.)

It's really frustrating being in an "in between" where nobody seems to want to help. It costs a LITERAL shitton of money to care for people that have disabilities regardless of their age or condition. The government agencies have to broaden the scope a bit because not everyone fits into their "definition"

CP is the worst really, because it varies SO MUCH. The same goes for ADHD as well... It's as if they have a checklist of issues and if you don't fill all the checkboxes...You don't qualify.

Dealing with school is tops for the worst of the worst we found so far. Sure we can take your kid...Will they have an aide? no. You have to apply to have one funded. Oh but she's mobile she doesn't need an aide. Yes she does...she Can't even transfer out of her chair to go to the bathroom. we can fund you to purchase Diapers for her.  :banghead: :banghead: :banghead: :banghead: :banghead:  :blowup:

super frustrating.  :banghead:

one more for good measure  :banghead:

CheffoJeffo

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Re: I never thot I'd b posting anything like this...
« Reply #42 on: October 12, 2012, 03:03:41 pm »
It's really frustrating being in an "in between" where nobody seems to want to help. It costs a LITERAL shitton of money to care for people that have disabilities regardless of their age or condition. The government agencies have to broaden the scope a bit because not everyone fits into their "definition"

CP is the worst really, because it varies SO MUCH. The same goes for ADHD as well... It's as if they have a checklist of issues and if you don't fill all the checkboxes...You don't qualify.

I feel that pain. The only funding we have gotten is a grant from Easter Seals for diapers (which we didn't need after they hit 30 months) and SSAH funding for respite services (give me money for me to get a break from my kids, but no actual money for the kids?  :dizzy:)
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vanrose72

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Re: I never thot I'd b posting anything like this...
« Reply #43 on: October 12, 2012, 04:40:52 pm »
I'm a little late, but I just read this post today.

Wow ... This absolutely breaks my heart, man. I'll keep you in my prayers!

The fact that you came to this forum for support in your darkest hour speaks highly of the people here. They really do care about you!

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #44 on: October 14, 2012, 09:46:26 am »
My God. I haven't been able to read over all the posts here for some days, & I don't have much time to post now, but, guys, I'm speechless. The outpouring of sympathy & offers of support r...beyond my ability to express gratitude for. Thank you? Thats so inadequate. Cheffo has recommended several organizations local to my area, Laura & I had been working with or at least been in touch with several of them, the 1 exception that stands out in my mind being Compass Autism Learning Center--& u can bet I'll b looking into that 1 asap.

Cheffo, we also get the funding from Easter Seals for diapers (pullups in Harrison's case). Although hes 7, we still haven't cracked the toilet training bit. We haven't pushed hard on that 1 bcause we have so many other issues to deal with. 1 thats always been a thorn in our side: Harrison doesn't eat enuf to survive (he eats, just not enuf, it almost seems to b an appetite issue--wish I had his problem lol), so we finally had to have a g-tube 'installed', & Harrison's eating is supplemented with nightly tube feeds. The formula he gets (Kids Essentials, similar to boost) is xpensive. Laura & I spent a considerable amount of time looking 4 funding 4 this, with no luck. My drug plan at work (which I don't have now anyway, since I'm pernanently laid off) wouldn't cover it, although it met much of their definition of a 'life sustaining medication'. Any1 have any idea where I might find some help/coverage with this? Its only 1 thing, but its a big 1, & in the brief time I'm going to have here this morning, its the 1st I can think of.

Theres even been talk among u about getting me/building me an arcade cab. Lol! Both I & Harrison would love it, hes a huge fan of the classics--esp the whole 'ghosts n goblins' series. I can help fund this (I have money saved, from years ago, from my Dad's estate, that he made me promise I'd throw into something...frivolous--I think this qualifies), & I have a big stack of parts & controls collecting dust in my basement. I've already brazenly told Cheffo that I would pay some1 to build me a Ghost in the Machine Mark II clone (with an LCD marquee, as per Randy T's amazing project), & I repeat it now. Its too much to ask, but, like I said, I can pay. I certainly won't have time to complete it myself now for years ahead (I won't let that stop me, though, I've already spent 6 years on it, & although my progress has been snail pace slow, it has been, surprisingly steady).

I also want to give back (or give forward). I'm going to check out the 'byoacers helping byoacers'. Sounds like a start.

And again, every1: Thanks. I hope I can help some1 else out the way you guys already have me. Gotta go for now.

Craig
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
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lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #45 on: October 14, 2012, 12:10:48 pm »
Hi again. At my father-in-laws prompting, I have dropped everything to get the account # for Harrison's trust fund, as several of you have requested. Again, I thank you, my son thanks you, my father-in-law thanks you, and there are numerous other family members and friends who will thank you, if only thru me, once I tell them of the amazing generosity offered by you, my friends on this forum. First I have to point something out: At this point, I have full access to this account. I have some hurdles I have to get over before I and my lawyer can sit down to set up a true trust fund that only Harrison can access (we're thinking on his 18th birthday) but again, to make it absolutely clear, at this point, if I was a dirt bag, I could take out all the money anyone contributes for myself. So if you don't want to trust me, please wait until I have the trust fund fully locked down. Otherwise, here's the info:

Bank of Montreal
Transit # 2915
Account # 3985-436

Thanks again, from the bottom of my heart. Gotta go again, as you can imagine, there are a million things I have to do.

Craig Munns
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

lilshawn

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Re: I never thot I'd b posting anything like this...
« Reply #46 on: October 14, 2012, 12:54:55 pm »
Quote
The formula he gets (Kids Essentials, similar to boost) is xpensive. Laura & I spent a considerable amount of time looking 4 funding 4 this, with no luck

I'm in alberta so your programs might be different to ours.

We had talked to a social worker at the hospital who hooked us up with charities to fund us when we needed this as an emergency type deal. Our Daughter needed a supplement for feedings when she was born and nothing would cover it. The social worker got us in contact with the lions club/Fraternal order of the eagles who donated to help pay for my daughters supplements when we needed it. While not a permanent solution it is something that could get you by for the next few months.

also talk to social assistance/income support...just plain out ask for "child health benefits"  then with benefits for him you can apply to have your supplement covered. Your sons pediatrician can write a letter for him stating he requires this and will help push things along.

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #47 on: October 15, 2012, 10:15:43 pm »
I've discovered that we might qualify for ACSD (Assistance for Children with Severe Disability), which would possibly cover the cost of Harrison's formula, + the equipment to go with it. We didn't --BINGO! Either that, or I was attempting to say "before" but it was too many letters to type-- bcause with Laura's disability, we made too much money. Now, of course...
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

lilshawn

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Re: I never thot I'd b posting anything like this...
« Reply #48 on: October 16, 2012, 09:48:36 am »
cool beans!

the government should cover it...key words are "failure to thrive". even if they say they aren't able to cover it, a letter from your pediatrician will help with them tweaking the system to work for you and get it covered.

don't forget, the government can't tell you they can do something, you have to tell them you need it, they then work around it to make it work.

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Re: I never thot I'd b posting anything like this...
« Reply #49 on: November 22, 2012, 01:54:00 am »
very sorry
 i  lost my father on August 4 in a motor vehicle accident, im 26 it he was 60 it happened 2 blocks from my new house have to drive past it every day....
Life is ....well life, that's it, stay strong, what a great community we have here so much support.

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #50 on: December 03, 2012, 02:09:05 pm »
very sorry
 i  lost my father on August 4 in a motor vehicle accident, im 26 it he was 60 it happened 2 blocks from my new house have to drive past it every day....
Life is ....well life, that's it, stay strong, what a great community we have here so much support.

That was too recent, a terrible way to die, he was too young, & it so, so sucks that u have it rubbed in your face every day. My sympathy goes out to u. I imagine you've had lots of suggestions about bereavement councilling (forgive my spelling, please). I recommend u take advantage of every source of help u can find.

Both of my parents r gone--my Dad died 2 years ago in hospital (that was 1 of the few sort-of breaks we've had over the last decade--Dad's death was absolutely beautful & peaceful--even Laura said so, & as a chaplin she witnessed thousands of deaths) & my Mom of cancer 9 years ago (she lived just long enuf to attend our marriage, but she missed out on H's birth).

As for having it rubbed in your face, in my case, every time I'm in the kitchen late at night, with the light we usually leave on at night on...
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #51 on: December 23, 2012, 09:11:25 pm »
Hello again, everyone. I have a bit more news. The ENT specialist that had been following Laura's case--the doctor who begged me to have an autopsy done--finally got back to me this week.

& the autopsy shows--nothing. No sign that her throat swelled shut (which, until a doctor can show me something else that can create similar symptoms, I will go to my grave swearing happened, despite the tongue reduction surgery, despite the steroids that were, until then, keeping the swelling down)(Somebody may point out that in many cases, the throat relaxes after a person dies or even just blacks out, & thus the swelling goes away. Laura had been tubulated as soon as she got to the hospital. If her throat had been swollen shut at that point, the tubulation would have left recognizable trauma in her throat. There was none). No sign of heart trouble, or lung trouble (the doctor had suspected a blood clot in a lung, but no evidence of such). No lymphoma. No HAE (hereditary engio edema?). No sign a allergic reaction (they'd already been looking for an alergy for weeks before).

So unless someone can think of something rare & bizarre, that the specialists haven't thought of yet (& they've already been looking for such for a while now) we will never know exactly what happened that terrible night.

If we never do figure it out, I hope its nothing inheritable. I'm pushing to have my son tested for HAE & anything else, however unlikely.

Happy holidays, everyone, & thanks again, from both of us.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #52 on: December 24, 2012, 04:03:53 pm »

Damn.  It sucks to have no answers.   :-\

lilshawn

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Re: I never thot I'd b posting anything like this...
« Reply #53 on: December 24, 2012, 06:56:40 pm »
http://my.clevelandclinic.org/Documents/Head_Neck/head_neck_testimonial.pdf

that's about the only thing i could think of that would:

a: cut off your airway

And

b: not leave any trace.

danny_galaga

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Re: I never thot I'd b posting anything like this...
« Reply #54 on: December 24, 2012, 07:34:04 pm »

Oh Christ Craig! I hadn't looked at this thread since you first posted. My condolences and I hope you have nothing but good luck from now on.


ROUGHING UP THE SUSPECT SINCE 1981

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #55 on: December 26, 2012, 09:36:13 pm »
that's about the only thing i could think of that would:

a: cut off your airway

And

b: not leave any trace.

Thanks for this. I read that article, &, given what I saw, I could believe that you've nailed it--except that she didn't have any of the other symptoms. She'd also been struggling with the swelling in her tongue for months (it was because of that, & the lesions on her throat, & the fact that the swelling seemed to react to steroids, that the doctor was sure she had lymphoma).

I will send that link on to the doctor. I imagine he'll think that it can't be that, & I worry that now theres no way to determine if this could have been it.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #56 on: December 27, 2012, 12:00:03 am »
I'm new here and just seen this thread tonight.  I can't imagine the pain you've been through and I am very sorry about your loss.

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #57 on: December 30, 2012, 11:29:51 pm »
Thanks Noshbomb. It has been...awful..., there really is no way to put a pretty picture on it. But I have to add that the people here have been...beyond words amazing. I said it before & I'll repeat it now; the outpouring of sympathy, suggestions, advice, & real help, including money into my son's trust fund, & even plans to buy or build us a cab(!) have been...totally unexpected, to say the least. There r real heroes here. Thanks again, everyone, from Harrison, me, & my friends & family who u can bet I've told in detail about this forum & the people in it.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
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Re: I never thot I'd b posting anything like this...
« Reply #58 on: January 02, 2013, 02:02:37 am »
I don't know. Likely moot at this point, but though it might've been environmental, it could've been psychological. Like, something seriously bad (or maybe just very impressing on her, like being shut in the fridge as a kid) happened to her years ago, and her 'condition' was an involuntary response.
« Last Edit: January 04, 2013, 10:40:58 pm by Gray_Area »
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lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #59 on: January 10, 2013, 10:24:53 pm »
We will very likely never know. But until a doctor can explain away what I saw, I will swear that despite the tongue reduction surgery, despite the steroids that were keeping the swelling down, despite the autopsy that showed no sign of swelling or trauma to her throat that would have been caused by the ems people tubulating a closed airway, despite the fact that I was able to get air into her while I was giving her CPR (although not full breaths--I was meeting resistance), & so did the police & later ems when they arrived, despite all that, I still say it: HER THROAT SWELLED SHUT.

Laura herself said she was choking. It came out broken because she was having trouble exhaling already. Then, she went completely silent--her airway was completely blocked, & stayed that way while she panicked & ran, until she collapsed & I started CPR. If it was anything but a closed airway that had scared her so badly, she would have been screaming. I had a hard time forcing air into her (but I'll still say I got some in, although, if her airway was blocked, it could have been gastric extension). Maybe I didn't have her head fully hyperextended. Trying to hold her head in the right position & cover the stoma from her trach at the same time was a challenge.

The ENT specialist can't accept that that is what happened, but he can't explain away what I saw, or what Laura said she was experiencing.

I keep thinking of how terrifying those last few seconds must have been...to be utterly unable to breath. It turned a woman with a Masters degree, who I have always said was a genius, into a mindless lunatic. She passed out very fast...I want to make that sound like a good thing, but I can't. She suffered, I'm sure, more than I can ever imagine (or want to), but she could have suffered longer, I suppose. There--thats the best spin I can put on it. I'm glad Harrison didn't see his mommy go through that. I know I won't ever be able to stop seeing it.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #60 on: March 19, 2013, 08:36:50 pm »
Hi everyone. Its been quite a while since I've looked here, & I probably wouldn't have, except its Laura's birthday today, & I'm feeling particularly down. She would have been 42 today.

Other than the obvious, I have nothing I can justify complaining about (note the disclaimer). My son is doing surprisingly well. We've had a few mornings of waking in tears ('I miss Mommy'), but he continues to move forward. I think we've finally mastered toilet training. He's dressing himself, although snaps, buttons & zippers r still beyond him (I wish Laura could c him--there was a time when we thot the toilet & dressing would always b beyond him). His reading & math (all I'm teaching him at present) continue to improve (something which still gauls me--I'm a blue collar grade 13 grad with no letters behind my name. How come I can do what the teaching pros, with all their resources and yes, he had a 1 of 1 educational assistant, couldn't do for him in school?). We're getting a Y' membership, H' has joined the Cub Scouts, & I've gone back to something I used to love (& love even more, now): rollerskating. We're doing okay money wise for now, although when my U.I. runs out in May, we'll start drawing from our savings, & that'll last about 2 year, I figure. I can't do anything until at least September, when H'll try school again (which I anticipate will b another disaster & I'll pull him out again--I'm not letting H' know I suspect that, though), so after that I'll have to see if I can find work that I can manage along with everything else that has to b done.

...okay, I'm starting to get close to whining, so I'll stop. It is what it is. There are people out there a lot worse off than I am. I recently met 1, in fact. While trying to get Harrison together with other homeschooled kids, we've gotten to know a single mother with 4 kids, ALL special needs. She's unemployed, has been managing cancer for 4 years, & basically had to kick her husband out a few years back because he became abusive to her kids. AND she also doesn't have the support & sympathy so many here have offered Harrison & I. So I'm no longer complaining about how bad I have it.

Anyway, I hadn't intended to go on this long, & I have to get Harrison off to bed.

Happy birthday, Laura.

& thanks, again, to everyone here. She would thank u, too.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

Le Chuck

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Re: I never thot I'd b posting anything like this...
« Reply #61 on: March 19, 2013, 09:03:58 pm »
Whining?  Sounds more like a success story to me  :applaud:

You're doing great and I have every confidence that the time you've spent preparing your boy this year will pay dividends when he attempts school next year.  The road you've mapped out isn't an easy one I'm sure, but you sound like you have everything analyzed and well planned.  Keep on doing the great job your doing.  I'm confident things will look up!

Oh, and Happy Birthday to Laura!

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Re: I never thot I'd b posting anything like this...
« Reply #62 on: March 19, 2013, 09:36:30 pm »
I'm sure she's looking down at you guys with great pride.
You're doing a great job with your son. Praying for you both. 

Happy birthday Laura you have a great family.

 :cheers:

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Re: I never thot I'd b posting anything like this...
« Reply #63 on: April 15, 2013, 06:24:52 pm »
Wow. Once again, you guys amaze me with your never ending support. Thanks for helping me put things in perspective. You're right--overal, we're doing amazing well. I still sleep with the baby monitor on, & I recently went to c my doc about a barely sore throat (it's lasted about 2 months, though, so maybe I SHOULD worry)

What I was about to whine about was our financial future. No point (yet). & I have a couple of vague ideas (renting out the basement as an apartment, for 1) that may save our bacon. There's nothing that says I have to return to the absolute hell of a job I kept for 13 years (& that I'm sure would have killed me within the next 10). So I'm grateful for the good fortune that has followed such bad. You guys r part of that.

Craig
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #64 on: April 17, 2013, 02:16:29 pm »
Hello Craig - I am terribly sorry to hear of what happened :(.

I started my account here today, and first read this thread a little while ago and might can leave an explanation of what happened, in particular what happened to cause Laura's throat to suddenly close. I'm really hoping that this will bring you some sort of closure, and I am really sorry if this "pokes at old wounds". I can't imagine what you went through, but all I can give right now is some sort of comfort and prayer.

It sounds strongly, that she had a condition called Laryngospasm...it is where the vocal cords basically swell, and cut off the airway to the lungs. It mostly occurs at night, when the person is laying down (asleep) and normally lasts only a few minutes. Basically, in a nutshell, people who have GERD will expierence this type of spasm when stomach acid reaches into the esophagus, and in turn, causes the airway to close. The fact that she started caughing more (randomly) and that she had a swollen tongue suggests strongly that she had GERD.

Here is a link about Laryngospasm:

http://www.m.webmd.com/heartburn-gerd/guide/laryngospasm-causes-symptoms-and-treatments


I hope that this will bring you some sense of closure, and if you will need anything in the future, please feel free to contact me anytime brother.


LC



lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #65 on: April 18, 2013, 02:37:50 pm »
It sounds strongly, that she had a condition called Laryngospasm...it is where the vocal cords basically swell, and cut off the airway to the lungs. It mostly occurs at night, when the person is laying down (asleep) and normally lasts only a few minutes. Basically, in a nutshell, people who have GERD will expierence this type of spasm when stomach acid reaches into the esophagus, and in turn, causes the airway to close. The fact that she started caughing more (randomly) and that she had a swollen tongue suggests strongly that she had GERD.

My God, I think u may have nailed it. Why didn't the ENT specialist mention this 1?...

Thanks for this. I'm going to email the link to the ENT specialist that worked on her, & c what he thinks. But of all the suggestions I've heard, this 1 sounds the closest to the symptoms I witnessed. & there was so suspicion that Laura had acid reflux, as well as several of the other conditions that lead to GERD. If so, it may help us determine if my son is in any danger (or even me--I've wondered if she could have been exposed to something here in the house...).
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Re: I never thot I'd b posting anything like this...
« Reply #66 on: April 18, 2013, 02:51:53 pm »
Allopathic medicine, dude. You probably can't even sue them.
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Re: I never thot I'd b posting anything like this...
« Reply #67 on: April 19, 2013, 12:19:19 am »
I'd b very reluctant to try that, anyway. Laura & I got to know the specialist pretty good, & I really do believe he gave her his all, & turned over every stone that made sense trying to help her. He was pretty messed up when she died--not even a day after he gave us the news that she didn't have cancer. I remember his reaction when he scoped her throat that day--he was thrilled with what he saw--the tongue reduction surgery combined with the steroids had taken all the swelling away, & although we still didn't know what was going on, her future was looking a lot brighter than it had been just minutes before. He was so glad to remove the damn trach that he'd never wanted to give her to begin with...

Damn it. Every time I remember how she looked on the floor as I worked on her, & what an awful experience it was for ME, I feel like s**t--& rightfully so. I cannot really imagine, nor, ultimately, do I want to imagine what it was like for HER. When she really went mindless with panic, when her airway became completely blocked, she turned away from me to run. She was so scared all she could do was run. If I could have seen her face then, if I could have really SEEN the absolute, mind shredding terror that must have become her whole existence, & survived seeing it, I can't imagine how I wouldn't now b curled into a fetal position in a straight jacket in some dark corner somewhere. My God, Laura, I am so sorry. It seemed very fast--from the moment she turned to when she collapsed after colliding with the table I don't think she even saw couldn't have been even 30 seconds. I'd like to hope that it was fast for her. But I suspect it was, perhaps even literally, eternity. Please let me b wrong. I'm an atheist--please let me b wrong about that, too. I hope some all-loving god, like the 1 I used to believe in, collected her & wiped her memory of those last few seconds. It is the absolute least of what she deserved.

Sorry again, everyone. I hope u don't mind me dumping that here.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
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Re: I never thot I'd b posting anything like this...
« Reply #68 on: April 19, 2013, 12:39:40 am »
Sorry again, everyone. I hope u don't mind me dumping that here.

It's a non-issue. Your apologies aren't necessary.

I'd say more but... yeah... don't stress about posting here.

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Re: I never thot I'd b posting anything like this...
« Reply #69 on: April 19, 2013, 06:33:24 pm »
Sorry again, everyone. I hope u don't mind me dumping that here.

it's been *counts on fingers* 11 years ago that my daughter died and some days it's like it was yesterday.

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Re: I never thot I'd b posting anything like this...
« Reply #70 on: April 20, 2013, 12:02:46 am »
it's been *counts on fingers* 11 years ago that my daughter died and some days it's like it was yesterday.

Boy, do I hear u on that 1. I have many nights when I dim the lights in the kitchen, & can barely look at the floor where Laura collapsed. I can still c...some of the more nightmarish things that happened after she collapsed, which I won't subject the readers to again.

Sorry about your daughter. I imagine some people may have told u u should b over it by now? Laura had a degree in thanatology, was a Chaplin in a critical care department of the hospital, & regularly gave palliative care & bereavement counselling. I used to say that she & Death were coworkers who gave each other a nod when she entered a critical patient's room. & she would b the 1st to tell u that no one has the wisdom or right to tell u how or how long u should grieve, & that everyone's xperience of another's death is unique, regardless of what Elizabeth Kubler-Ross says. She herself never recovered from her mother's death, in fact, I believe it contributed directly to her own death even though it was 6 years later.
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Re: I never thot I'd b posting anything like this...
« Reply #71 on: May 10, 2013, 12:13:20 am »
It sounds strongly, that she had a condition called Laryngospasm...it is where the vocal cords basically swell, and cut off the airway to the lungs. It mostly occurs at night, when the person is laying down (asleep) and normally lasts only a few minutes. Basically, in a nutshell, people who have GERD will expierence this type of spasm when stomach acid reaches into the esophagus, and in turn, causes the airway to close. The fact that she started caughing more (randomly) and that she had a swollen tongue suggests strongly that she had GERD.

My God, I think u may have nailed it. Why didn't the ENT specialist mention this 1?...

Thanks for this. I'm going to email the link to the ENT specialist that worked on her, & c what he thinks. But of all the suggestions I've heard, this 1 sounds the closest to the symptoms I witnessed. & there was so suspicion that Laura had acid reflux, as well as several of the other conditions that lead to GERD. If so, it may help us determine if my son is in any danger (or even me--I've wondered if she could have been exposed to something here in the house...).

I haven't heard back from the ENT specialist, but I already know what hes going to say. The autopsy showed no trauma to her throat, such as would have been caused by acid reflux irritating the area, & no signs of swelling. I think this is going to stay a mystery. Thanks for your efforts, though. I imagine the ENT specialist appreciates it too, last I knew he was grasping at straws trying to find an explanation. ...In fact, I'll reveal this embarrassing 1: 1 of the questions an assistant asked us (this occured several months before Laura died), while looking for another cause for her throat swelling other than lymphoma, was if we had been having particularly rough oral sex :lol...

...Oh, & the answer was 'no'.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #72 on: May 12, 2013, 04:22:21 pm »
In fact, I'll reveal this embarrassing 1: 1 of the questions an assistant asked us (this occured several months before Laura died), while looking for another cause for her throat swelling other than lymphoma, was if we had been having particularly rough oral sex :lol...

...Oh, & the answer was 'no'.

Well, I coulda told them that. You don't fit the socio-economic profile.

Anyways, I know you think the ENT is a nice person and all, but really when presenting information that could embarrass, let alone incriminate someone, you get a second opinion.
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Re: I never thot I'd b posting anything like this...
« Reply #73 on: May 17, 2013, 12:55:52 am »
1st, still no word from the financial planner. I'll try to call him later today, but I already know its gonna b a very busy day, so I can't promise I'll get to it. Soon, in any event. I'm a little perturbed he hasn't called me.

I just went back thru these posts to the very start, & I still can't really believe it all. I thot I might b surprised by my posts here, that they would look new somehow, or that there'd b elements to them that I'd forgotten, but, for the most part, they read & feel like a I could have written them a week ago at the latest.

& yet the changes have been profound, &, in the end, a surprising number of them have been positive.

I'm still not sure what we're gonna do about money. I know that, come what may, I am NOT returning to the kind of work I'd been doing. I felt like I was being lazy & selfish about this for quite a while, & then I saw a friend who hasn't seen me almost since the start of all this, & the look of shock on her face, coupled with her statement that I looked 10 years younger reminded me of all the evils of that job. I'd spent 13 years in a factory, doing work I hated, supporting an industry I don't believe in, for people who couldn't have cared less if we lived or died. I averaged 5 hours of sleep a night. Many nights I remember stumbling half asleep thru the streets when I should have been in bed, walking H's service dog. There were days, too, when I was working & almost collapsed because I was falling asleep on my feet. My weight had crept up to almost 240, I was too tired to b interested in anything, & life had, in general, become an endless grey hell. I'm absolutely certain that I wouldn't have lived another decade, &, in fact, I was counting on it.

Wow. I don't think I'd realized just how bad it'd been. I've never summed it all up like that. That clenches it--I'm NOT going back to anything like the previous work I've done, come what may.

& theres another piece of good news I c I've not mentioned in the past posts--sometime in late Febuary, Harrison suddenly started to eat so much that I have only had to give him 2 small tube feedings since, & both of those were in Febuary. He's now averaging somewhere around 1500 calories a day. The only possible explanation I can c for it is that hes gone thru a growth spurt--his height has gone up by about 1 1/2" since Febuary. We're still a long way from removing the 'tube--we have to b absolutely sure hes not going to regress, but its certainly a big step in the right direction. Now we're working on WHAT he eats. lol

Well, I hadn't intended to go on this long, but I'm glad I did. Now, off to bed. Take care everyone, &, as always, thanks, thanks, thanks :notworthy:

Craig
« Last Edit: May 17, 2013, 12:59:29 am by lcmgadgets »
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Re: I never thot I'd b posting anything like this...
« Reply #74 on: June 02, 2013, 01:07:05 am »
Hello and good evening again.

Its been a little while since I've last been on (and posted) here - mostly trying to tackle the driving cab.  I just wanted to take a moment to tell ya my friend, that all of us at the Clark residence have been thinking and saying prayers for you and your family. 

We hope all is getting better  :)


LC

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Re: I never thot I'd b posting anything like this...
« Reply #75 on: June 03, 2013, 10:37:30 am »
It is, thanks. It doesn't 'go away', of course, but it does get a little easier to bear every day. H' is doing amazingly well, as I posted earlier. We still get short crying bouts, which I do not discourage, of course.Its strange to think that I have the advantage of having known an expert on all things about death to draw from. Without her wisdom behind me ( which, of course, I only remember a fraction of, unfortunately) I KNOW I would have made several mistakes by now.

& I have a milestone coming up. I've talked about a garage sale for some time, now, & it's supposed to happen sometime late this month. & it's time I cleared out Laura's clothes. I'm not looking forward to these steps, but they r necessary, esp. if we're going to rent out the basement. This'll b very hard for both of us to do...I've got to b sure H' is ready.

The other thing I want to happen is for the financial planner to get back to me. I finally left him a message last week. I hope he responds soon.

& some of u may have noticed my announcement of 'Project Legacy'. I haven't posted anything there in a while because I'm still setting up my little work room. But I will get back to it when I have something appropriate to post.
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Re: I never thot I'd b posting anything like this...
« Reply #76 on: June 10, 2013, 05:51:17 pm »
Okay, finally. Its June 10th, almost 9 months since Laura's death, & I finally have a simple & effective way for the many generous members here to contribute to a trust fund for my son. Sorry it's taken me so long to get this done, but I wanted it to b simple & secure for anyone to do.

Contribute to Harrison's RDSP. I wish I had thot of this before I maxed it out for this year. Our government matches contributions made into it (up to a max of $3500, in our case, for this year). Stupid of me not to think of this. But my financial planner assures me that over-contributing to it is still a good investment: Probably the simplest, safest (for the contributors) & least expensive (for me to set up), unless contributions came to a very large sum (I should have asked what that was, but I assume he means >$10,000) in which case it would make more sense to create a separate investment, & transfer money from it into H's RDSP each year.

So, if anyone still wants to contribute to Harrison's trust fund (& God bless those of u who have offered), I'm instructed to tell u to write a cheque, payable to DundeeWealth, & in memo on the cheque write re account # 77D0185-C. Mail it to me:

Craig Munns
291 Panorama Crescent
London, ON
Canada
N5Z 3H2

I'll take the cheques to Wayne (my financial planner) as they accumulate--he tells me minimum deposit into the RDSP is $50.

...& now that I've actually gone over these instructions, I wonder how the heck this's supposed to b secure for the contributors?? There's nothing here to actually show that this account is my son's, or that I can't get into it. (On a side note, Wayne made it clear to me that I CAN get into H's RDSP, if I can demonstrate that I'm doing so in his best interest, & show where the money is going). So, I guess at this point, I'll ask everyone out there in byoac forum land: Do u want me to nail this down further?

Blast it. Sorry everyone. The more I look at this, & remember that many of u r going out of your way to help us out, simply out of kindness, I become more convinced that I could do better. If people want me to, I'll go back to the lawyer, spell out exactly what I need (a trust fund for my son, a simple way for people to contribute to it, a guarantee to the contributor that only my son can withdraw from it when it comes due), hold out a fist full of cash, & tell him to make it happen. I realize now that thats what I should have done 8 months ago. Boy am I dense!
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

Le Chuck

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Re: I never thot I'd b posting anything like this...
« Reply #77 on: June 10, 2013, 07:20:21 pm »
Or...

post a paypal address and those that want can blast you some money.  Those that don't won't.  I have no reason to think that your boy's best interests aren't at heart so I think I can trust you to aggregate some funds and cut the check yourself.  Don't jump through hoops.  A good plan now is better than a perfect plan tomorrow.   :cheers:

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Re: I never thot I'd b posting anything like this...
« Reply #78 on: June 10, 2013, 09:16:36 pm »
Paypal is also an easier option for those of us overseas. I'm keen to throw some money your way but don't have a chequebook and even if I did I'm not sure how it would work internationally. As Le Chuck said, I have no reason to think that Harrison's best interests will be overlooked.
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Re: I never thot I'd b posting anything like this...
« Reply #79 on: June 11, 2013, 03:16:47 am »
paypal has a nasty habit of freezing accounts if they think you are using it illegally. this would include such things as just receiving money and then transferring it to a bank account. They look at it as a money laundering activity.