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.

The Letter - Wake up medical professionals!!!!

This is a letter that I started writing when I wrote my one year post. It got me thinking that complaining about it is not enough. I felt that I had to do something! When I feel the need to do something, to make a change when I felt that 'service' has been lacking, or I have been treated unfairly, I write a letter. And here it is!
I am not sure who I am going to send it to. I am thinking the Canadian Medical Assocation, Society of Gynecologists and Obstetricians, and Canadian Association of Midwives.
I am also encouraging all those other mothers who are as pissed off as I am - write. Write that letter that has been in the back of your brain for the last year, or two or more. Write to people who misrepresented spina bifida to you, and brought you to that dark place before you saw the light - what spina bifida actually looks like.
I am a strong beleiver in the saying 'the pen is mighter than the sword'. Yes cheesy I know.

Here goes:

To whom it may concern,


I am writing in the hopes of improving the experiences of someone who has been given a prenatal diagnosis of spina bifida and hydrocephalus. I have been thinking of writing this letter since the birth of my son, but kept putting it off, thinking it would not change anything. But the more I hear stories of other parents and their experiences; I decided I had to write.


My son was born with spina bifida and hydrocephalus on November 13, 2009. We got his diagnosis one year ago. This is a recollection of our experience.


July 16, 2009. This was the day I went for a second level ultrasound, 21 weeks pregnant and knowing that my baby was a boy and 2 weeks ago they couldn’t see his cerebellum. My IPS had come back negative so I tried not to worry. My regular obstetrician, Dr A, who was a co-worker, encouraged me not to worry. I spent 2 hours having an ultrasound by different techs and different doctors, all who did not tell me what they saw. Finally they told me I could go wait and talk to the doctor, and they gave me some pictures.


The doctor, Dr B, called me in, this was someone that I had never met before but was seeing me as a favour to Dr A. The conversation went “the ultrasound shows that the baby has spina bifida. You are 21 weeks along; if you want to terminate you have until 24 weeks. We will support whatever decision you want to do and if you want to terminate we can take care of that here instead of your own hospital if you want.” The doctor and I discussed what spina bifida was, a neural tube defect, which it was in the lower lumbar, upper sacral area of his back, which the ultrasound had showed. I was told that spina bifida meant being in a wheelchair, wearing diapers for life, being dependent on us, and intellectual problems. Then he said “OK I’ll leave you alone now and give you some time. There is a phone you can call someone and I’ll be back.”


This is what your baby has, you can terminate, this is the horrible things that your baby will be facing, and I’ll be back. I am an obstetrical nurse, but I didn’t have any firsthand experience with this, other than what he was telling me, and what I had learned in school – which was not much.


This is the last time I saw Dr B, who is part of a high risk pregnancy unit. Over the next two weeks we collected a lot of information about what spina bifida meant, and what to expect. My husband and I received valuable, research based information the next day when we saw the genetics doctor, Dr Chitayat, who provided us with up to date information and the support we needed. We were able to discuss neural tube defect, anticipated physical function, hydrocephalus and more. We researched online as well as contacted the Spina Bifida and Hydrocephalus Association of Ontario.


We were further referred to Dr. Rutka at Sick Kids, and Dr Biggar at Bloorview Kids Rehab who were able to show us what spina bifida was and what kids look and act like. Discussing spina bifida with doctors who knew what they were talking about, had worked with, treated and watched these children grow. They gave us a true picture of what life would be like if we continued with the pregnancy; which is what we decided to do.


After we had made our decision not to terminate, about 2 weeks later (at 23 weeks) Dr A pulled me aside at work, he wanted to talk to me. He said that Dr B had called to ask him to talk to me, he wanted to make sure that I was aware of what we were facing with a child with spina bifida. He said spina bifida meant paraplegia, total dependence, mental deficits, the child would be in diapers for life and we needed to think about how this would impact our lives and our older daughters life. He wanted me to reconsider our decision (not to terminate). I was very clear that I had researched spina bifida and did not believe this to be the case and would not reconsider.


For the rest of my pregnancy I had shared care between Dr A and the high risk clinic in Toronto, but not with Dr B.


This experience is by no means unique. In fact it seems to be common place. From discussing my experiences with other women and families in Canada and the United States there was a lot of commonalities in how we were told about spina bifida from family doctors, obstetricians, mid wives and perinatologists. My experience was almost word for word the same as women reported in online spina bifida forums, from families around the world, as well as a support group at Bloorview.


To me, this is scary, as I see that it reflects the outdated knowledge of the general medical profession about spina bifida, who are trying to inform others. I think this showcases the need for further education around the current experiences and expectations of spina bifida.


Our life with spina bifida has given us a happy and healthy son. He had surgery to repair the lesion when he was 24 hours old, and surgery to insert a vp shunt when he was 3 weeks old. He goes to physical therapy and gets catheterized regularly. We have additional doctor appointments and some extra worries, but anticipate a good and successful quality of life. We are confident that he will be able to walk, achieve social continence, attend school and become independent. This is not the picture that was painted for us, and is currently being painted by doctors who are telling families what a diagnosis of spina bifida is. They discuss archaic beliefs and outcomes about spina bifida and say it is fact. And parents believe what they are being told.


I am thankful I did not listen to what Dr B told us, and encouraged us to do. I am thankful I had the fortitude to seek further information and to educate myself and my family about spina bifida. I am saddened to think not every woman who is told such a scary diagnosis would seek further information, beyond what the obstetrician/family doctor/midwife told them, and the consequences of this. I believe that every woman has a choice, but an informed choice. Informed with current research and with reasonable expectations of what life with spina bifida and hydrocephalus entails.


Being on this side of a prenatal diagnosis I think it is bordering on incompetence to give out such negative and one-sided information about spina bifida. Doctors who do not understand about what life with spina bifida entails should not see themselves as being a reliable source of medical information to parents. I believe this is common through giving a diagnosis that is not fully understood by medical professionals who only deal with the healthy norm of the population.


I think there is an opportunity for valuable education for medical professionals to have updated knowledge about spina bifida. I propose you take this opportunity to think about how you can improve these experiences through current and accurate education.
Thank you for your time,


Amanda Ridding

Clinic Part 2 - The circumcision Question

Another interesting thing that came out of the visit – the question about circumcision. Nickolas is not circumcised – before we found out about the spina bifida, when we knew we were having a boy, we decided that yes we would get him circumcised. Then when we found out about the SB that went out the window, with the idea to keep as much sensation as possible. That and when he was born that was the last thing on our mind, and no one asked/offered/explained the pros and cons.


Well the urologist that we saw asked why Nickolas wasn’t circumcised. I just explained pretty much the same as above. He said that a major pro would be the decrease of infection, and it would actually be a medical indication – and covered by OHIP (saving us $300). Hmmm. So I’m thinking yes. And then we talk about what that means.

Well, as an infant a circumcision means a bit of local freezing, being strapped down and having a kind of clamp attached and cut around. Gross-sounding, wait ‘till you assist with them! As an older baby it does not mean the same thing. Circumcision as an 8 month old means general anaesthetic, and stitching, but also a specialist (urologist) who can make a ‘neat’ job. (Whatever that means). Well now I don’t know what to do! I don’t want Nickolas to go under general (put to sleep), but if it is a medical indication… AND if he does need it, I don’t want to wait until he’s a toddler.

Kyle is no help. I can’t even use the he-has-the-penis excuse for him making the decision. Now he comes back with the you-have-the-medical-knowledge excuse. He wants me to make the decision, I want him to make the decision. And here we are. Time to look up some research papers and do some investigating!

OK enough with the penis talk - time for some cuteness!

Nickolas enjoying a floaty toy

I LOVE this bathing suit - I call it her tarzan swimsuit!