Spina Bifida Awareness

I am all for spina bifida awareness. I think there should be more of it, I welcome more of it.
I saw a recent post on facebook about a series of ads the SBA (Spina Bifida Association) is playing in Times Square. I though Perfect! Lets take a look at it!
I was excited that some public awareness was finally going to happen - then I saw the ad.
Folic Acid Awareness.

The ad was all about the importance of taking folic acid so your kid doesn't end up like mine! That is how it makes me feel!!! Did they show any kids with spina bifida? Did they try to straighten up some common misconceptions about spina bifida? NO!

Their "spina bifida awareness" campaign was all about preventing spina bifida (and you can't prevent it 100% - me, and alot of the other moms were taking folic acid) Folic acid statistically decreases the chances of having a neural tube defect, but there is no one cause of spina bifida.

You can view the ads here. Give your baby a healthy start and Give your children a gift today .
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.6150369/k.5F15/SBA_Times_Square_PSAs.htm

This is what they say:

Give your baby a healthy start

Spina bifida is the more common permanently disabling birth defect in the US

8 babies are born with spina bifida or a similar defect every day

take a multivitamin with folic acid daily before pregnancy to give your baby a healthy start

Give your future son or daughter a gift today

Take a multivitamin with folic acid daily before pregnancy to help prevent birth defects like Spina Bifida

Their future depends on what you do with the present

Thanks for that. Those ads just make me so aware of what spina bifida is. It doesn't blame the mother at all!

The Cottage Life - Part 2

Family. The joys of family, the fun of family, the support of family and the acceptance of family.

I am blessed with the best family – my own family, that Kyle and I made together, my immediate family (birth and in-law), and our extended families (grandmothers, aunts/uncles, great aunts/uncles, cousins, second cousins) and those we call family. This family has never questioned decisions we have made, has not offered unwanted advice, and have rejoiced in the accomplishments of Nickolas and Katheryn.

So what brought all of this on? All the family that we saw when we were visiting the different cottages. Everyone wanted to hold Nick – and Nickolas wanted to be held by everyone. No shyness – no ‘where is my mommy’ just aah a nice shoulder I can snuggle into.

(My camera’s battery died, so I don’t have alot of pictures at the family reunion at Kushog)

We even got some physio done while we were out – working on rolling and sitting, with everyone cheering him on.

Nickolas even got to enjoy some time out by the fire. But he was pretty sleepy at the same time. He slept alot better at the cottage than Katheryn did the first (or second) year she was there. Thankfully we had no 2 hours screaming fits at 2am.

But Cottage time, reminds me of family time – and how I think I have the best there is!

The Cottage Life - Part 1

Can you get vacation if you are already off on maternity leave?


We spent 6 days visiting family and enjoying the carefree, relaxing life of the cottage. In 6 days we travelled 450 km (275 miles for my American friends), visited 2 sides of the family, over 40 different people and 5 dogs and 2 lakes (Orr Lake and Kushog Lake).

Nickolas enjoyed exploring things – he has gotten so much more interested in the things that are around him. He searches and grabs and just wants to see and do everything. His favourite thing is to be held by someone – doesn’t matter who - and watch the leaves.

 
And of course he shows off how he can sit by himself now – just a couple tips now and then. And rolling over – he is starting to get the hang of it, and know what it is used for. Pretty much as a means to get places – we are not there yet – but hopefully soon!
 
Katheryn enjoys being by the water, even when she has to wear her life jacket. Orr Lake is very shallow and perfect for little girls to run around and splash in. Kushog Lake is quite deep – the water level is actually higher than usual, perfect for adults who want to swim, not so good for little girls who have no fear of the water.

Considering the number of drowning deaths in Ontario and Canada since the beginning of the summer – we are very anxious that Katheryn wear her life jacket whenever she is near the water at Kushog. And – surprisingly – she actually put on the life jacket without a fight.

 

Rolling Action

Nickolas can roll - I know he can. He just doesn't want to. And he's only gone from his stomach to his back without assistance - and back to stomach is harder. He can do it with assistance no problem - he just likes that extra little push. But like I said, I know he can do it.

Well he's gotten alot more comfortable rolling and reaching and just moving his body. So here is a video that proves that YES HE CAN! (and Yes he WILL).

You might not want the volume up loud. Katheryn is in the background screaming because I took away Nick's bath seat because she kept getting in and couldn't get out!

The pharmacy rant - again

Really!!!!
I guess I only have myself to blame, because I didn't change pharmacies after my initial pharmacy rant (see here). But I was too lazy to change pharmacies and thought I'd give them another chance -

We've just started ditropan for Nickolas' bladder. This is not a medication I've been looking forward to - as I've described in a previous post (here). So I've been researching it.
Not only is it not considered safe for children under 5 (or 6 depending where you are reading) but that doesn't keep urologists from prescribing it. It is very very common for infants with spina bifida to be prescribed it - way before they turn 6. Now not considered safe seems to be drug-speak for we haven't tested it on infants and children under 6 so we have to cover our buts. Well it seems that enough infants with spina bifida have been on it - they should get their acts together and either say yes it is safe, or no it is not. Not just hide behind a 'we haven't tested it, so we can't say' because it is being tested - on our kids!!!
OK that was so not the pharmacy rant I started to write about!

So anyways - aren't pharmacists supposed to protect kids from being prescribed a medication they are contraindicated for? Or is that asking too much - isn't that what they do?! But we are still taking it, even if he is in this age group. So my problem with my pharmacy - At Ritson and Taunton - is that they don't know what they are talking about!
Seriously. I know more about this medication than the pharmacists who's job it is to know about this medication. And I learned about it by spending a bit of time online and reading the label of the drug! So first of all the pharmacists read the prescription wrong. It was written 1.5mL tid - they wrote it as 2.5 mL tid (tid = three times a day). OK doctors scribble, I'm not too happy about it - but I can (kinda) see where the mistake can be made (as a fellow medical professional - not as a mother). Actually you know what, I cannot see where they are coming from. They are accountable for writing the wrong prescription - messy writing is not an excuse.

They asked if I wanted to talk to the pharmacist because I haven't had this medication before. Sure, why not. So I asked about side effects - the first thing he said was dizziness, so if Nickolas was walking - nope. Then he went on and on about being dry during the night with bed wetting - still nope.
He said also to watch for dry mouth and dry eyes. OK good to know. I asked about constipation - oh yes, constipation could be a side effect - because the bladder and bowels are so close and relaxing the bladder could relax the bowels. OK, gotcha - even though I already knew this.
Then I asked about over heating. He didn't know what I meant, he asked me if I meant dehydration. Well, not really, but sure I guess over-heating like dehydration. No, dehydration is not a side effect. Do not worry about over heating.
WRONG!!!!!

I know from talking with other moms who's kids are on ditropan that over heating is big. And if you look up ditropan at this link, it has a whole section on What is the most important information I should know about Ditropan?

Ditropan can cause heat prostration (fever and heat stroke due to decreased sweating) in high temperatures. If you live in a hot climate or will be exposed to high temperatures, take appropriate precautions.

Now I guess Canada may not be considered a hot climate. But when we've had 30 - 40 degree (Celsius) weather for the last month - I think we can qualify. So how come my pharmacist - the one who is supposed  to know about the medications they give out - it's his job! did not know the most important this I should know about Ditropan. And made me kinda think I didn't know what I was talking about!

I am extremely unhappy about this. I feel a letter coming on!!! Right after I call around the different pharmacy's.