Wednesday, July 16, 2008

Gimme A Break

First of all, I apologize for being such a negligent blogger. That sinus infection was something else - I was caught between being worried that the front of my face was going to blow off to wishing it would blow off.

Warning: The post below is an angry rant that involves the Canadian healthcare system. I must preface this by saying that I do like our system, however, as someone who has been in the position of having to use it A LOT in the last 1.5 years, there are some major problems. In many ways our system is broken.

So, I'm wondering when Bennett is going to get a break. First of all, the kid had the misfotune of being in my belly during a horrific car accident. Next, we had a wonderful (insert HEAVY sarcasm) obstretrician who not only refused to see me in the hospital (despite desperate pleas from nurses) after the accident, but continued to refuse to see me until I could get to his office in a wheelchair. As a result, I had NO prenatal care for about 10 weeks. Then, despite having a mother who had been through enormous trauma while pregnant, being born a month early and spending the first couple days in intensive care, he fell through the cracks and was never referred for follow-up by our Infant Development program. Normally, any one of those factors alone would have been enough for referral. As a result, he had a late diagnosis (13 months) and did not start therapy until he was 15 months.

Now, because of my physical limitations (as a direct result of the previously mentioned horrific car accident) I have difficulty doing much of his physiotherapy. We applied to a program called Special Services at Home that would provide some funds (not much) to allow us to hire someone to help with this a few hours a week. Well, he was approved but guess what - for the first time ever apparently, there is a waiting list and we should not expect any money for months - perhaps longer - perhaps never.

The doctor at the Shriner's Clinic from a month ago, recommended Bennett for an AFO (ankle/foot orthotic). This should help his stability and help him learn to walk. Unfortunately, the guy who normallly does the casting wasn't there that day but we were reassured that we would be contacted within 2 weeks for an appointment. After that, the AFO would take 4-6 weeks. Well, we weren't contacted with 2 weeks or even 3 weeks. Finally, after numerous calls and messages on my part, we finally have an appointment for AUGUST 29th!! After that, it will take another couple of months to actually get the AFOs. So, if we're lucky (and you can see how that's going) he might have his brace sometime in late October of November. I was and am so angry at this delay. It's ridiculous that we have to wait so long for a device that can help a little boy, who has already struggled so much, to learn to walk! We are going to research and see if we have any other options, even if it involves travel and more expenses. Fortunately, we are in a position where we can do this.

If you've made it through this angry rant, I've rewarded you below with a cute video of Bennett dipping his french fries. Yes, it is MacDonalds - I confess. I just showed him how to dip before he started eating and he took to it like a pro. I don't know why but it just cracks me up to watch him dip! You may note the Santa bib - I promise, it's not an old video. I just don't see why I should only use a perfectly good bib once a year.


Mummu and Poppa said...

Bennett, you are just 'cute as a button' with your fries and ketchup. For some reason, ketchup works wonders on all sorts of foods!

Barbara - you certainly deserve to vent. You must do what you must do. Is there such a thing as 'peace of mind'? ... maybe down the road? There certainly doesn't seem to be any from the medical profession. We are sending you a well deserved 'big hug'. It is so difficult for you to relax and just be a mommy who is enjoying her baby. If it is not one thing it is two things! What next, we ask?

We will have Bennett tomorrow and Poppa will walk with Bennett - having him use both legs gives Bennett a different perspective on a room and what 'other things' there might be to get into. Ha! Ha! We do so enjoy our time with Bennett and of course Bowser, also.

Take care and God Bless!

Mummu and Poppa
xxx ooo xxx ooo xxx ooo

Dawn said...

Awe he is always so cute!

I'm sorry you've had so much trouble with the universal health care. I have this argument all the time with my IL's who are all about the US needing universal healthcare and I just pray that day never happens. For children YES, for capable/lazy adults NO!

It's an election year and you'll hear candidates campaign for "Universal Health care" some intelligent person went out asking people in a poll, "what would you rather have, universal healthcare, or governmental health care?" and all these idiots all said "Universal" they don't even realize governmental is the same darn thing. What is this world coming to? Sorry to hijack your thread here. Guess you hit a nerve here too. ;)

grandma & grandpa said...

Hi Bennett,
well it seems that your mommy is ready to wage war on our health system. LOOK OUT HEALTH CARE SYSTEM!!! I almost feel sorry for them. Like your mommy says, we do have a pretty good health care system, HOWEVER, it could sure use some sprucing up in a few areas. Waiting periods are too long for tests and treatments, etc. Grandpa and I don't understand how you could have fallen through the cracks. Lucky for you that your mommy insisted that you be tested for certain things, thus, finally getting a diagnoses. Now, the really big job is to get the services that are out there. (well, I think they are out there...aren't they?) All your family and friends, and there are a lot, are there for you and your parents in this.
You spent the weekend with us and what fun you were. However,
I would like to know how come you get to sleep on 3/4 of a double bed with grandma. Grandma is not tiny and I need at LEAST 1/4 of the be bed. But that's ok. I just love to look at you when you sleep. I do object somewhat to you getting into your favourite sleeping position....butt up in the air and knees and feet tucked in, and your head on the mattress. The reason I object is because the butt end is usually where my head is.
Lots of love, hugs and kisses
Grandma and grandpa

North Dakota Ward's said...

Keep us posted on how everything turns out. I have no experience with your health care system. But I will say that Sammy got his prescription for his AFO, and then a week later it was in. Our rehab makes them on site though, which is really nice because they can cut them to the right size in one fitting appointment. Since Sammy cries the whole time he has his on, it will probably take him a couple months to get used to his. But Sammy didn't get the brace where he can move his foot, so Bennett may not be as irritated by them. Good Luck!

Bonnie said...

I agree with you - the system has not and is not working for any of you - and you have a right to be very frustrated and angry. Have you asked your GP for a referral to Sick Kids??

The "dipping" is precious - no, let me change that - Bennett is precious!

I wish there was something more concrete I could do for you to help the system work better for you. Never having to use the system, I'm not familiar with the frustrations of waiting - for the minimums

This may not give you a whole lot of consolation - but - all of you are in my heart and prayers.

With lots of love and big hub,
Auntie Bonnie

Kara said...

Sorry to hear about the delay in getting the afos Barbara (incidentally, we were there to see the oh-so chatty Shriner's doctor from Montreal that day too...must've just missed you!) I know how much every day means in terms of getting help for our kids, but don't despair, all will be okay. (This coming from the woman who was on the phone screaming at someone wanting to know why Infant Development hadn't contacted her yet - and Kasia wasn't even 2 months old!)

I thought about Sick Kids as an option for you guys as well, but it will likely take you just as long to get an appointment there as it will to have the afos made by the original slacker. (I will now refer to him as such because it just seems right to do so.)

Fortunately for us, we've never experienced the wait time issue others have mentioned. Luckily we've had quick referals, tests, diagnosis and treatments. If I had a flag...I guess I'd be waving it...

Oh yeah, and give me a call....

P.S. I guess you can check out my blog now. A warning...the first post is about you!

Anonymous said...

I've missed you and still laugh inside everytime I think about you licking your kid clean.

Matters of restrictive medical care are less than funny, and I'm in the camp of hoping the US will not fall for a government mandated program.

Enough about me. If you are able to get something outside of the system, consider researching This company is very accommodating and if you can get someone to cast him, it can be mailed to Cascade (in western Washington state). They will mail the AFO back.

Hoping something works out for Bennett soon. Barbara

Kiera Beth said...

When I was pregnant, I was in a training class with a gentleman from Canada and we were comparing the health systems. I recall that we were finding so much that needed to be tweaked on each side of the border. Health care is such a difficult topic and it sounds like the system has really let you down in many ways. I cannot believe your experience with the OBGYN. That is AWFUL!

I am always so impressed with everything that you are doing. You were really hit with a triple-wammy between the accident, his birth and his diagnosis. It must have been a tidal wave of emotions for you.

Bennett is so lucky to have a Mom (and Dad) who continue to fight for what it right for him, despite a system that is causing issues.

I did see that one person from Canada came down to Minneapolis to visit the Shriner's Hospital here in the twin cities. I am not sure if that would be something you might want to look into. I know it would be quite the trip.

I think of you guys often and hope that you get the support you deserve from your system.

Kiera Beth said...

As for the other part of the post -- I LOVE watching Bennett dunk! He does look like the pro at that!

Barbara said...

Healthcare - such a difficult thing. I don't know a lot about the US system but know that there are problems there too. I don't think there are any easy answers for either country.

Our physio is going to try and get us in earlier but said she couldn't promise anything. I talked to her about going somewhere else and she said at this point our wait would be just as long. The bigger problem would be the regular fittings he will need as he grows.