A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Saturday, July 31, 2010

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).

video

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!

Thursday, July 29, 2010

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.

Wednesday, July 28, 2010

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


Tuesday, July 27, 2010

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!

Monday, July 26, 2010

Clinic Visit

We had our second spina bifida clinic this week. I can’t believe it’s been so long since we first went to Bloorview Kids Rehab (now Holland-Bloorview), but it was only 4 months ago. It feels like we live there sometimes. I could drive there with my eyes closed! But everyone there is so focused. So great with everything. We go to Bloorview for physiotherapy weekly, and then once a month they have a mom and baby/child support group, and then our clinic visits. So we can see everyone at the same time. We only need to go downtown to Sick Kids for neurosurgery appointments and tests that can’t be done at Bloorview.

Our appointment started at 3pm, so I knew it would be a long afternoon – we got out at 7pm. We saw the developmental paediatrician – Dr Church, had a renal ultrasound – all good, and we saw urology. The urologists that we see rotate, so the one we saw in January at Sick Kids are part of the same rotation that we see at Bloorview, but so far we have seen at least 3 different doctors.

So the first thing he asks is what medication are we on. Restoralax (Miralax) is the major one – but I keep forgetting it is a medication. But also Trimethoprim, an antibiotic that we are using for a prophylaxis (to prevent infection) because we are cathing. Well it was decided to stop the antibiotic – perfect I was going to ask because he hasn’t had a UTI and I don’t want him to have too many antibiotics unless he needs it. Then the urologist wanted us to start ditropan. Ugh!

The dreaded ditropan. I’ve heard of it before – it is one of the most common medications that kids who have SB are on – second only to Miralax it seems. This medication is to relax to bladder, this prevents reflux (urine being forced back into the kidneys – not good). But wait a sec! I thought Nickolas’ bladder was relaxed – the ‘lazy’ bladder. Well no we don’t know what his bladder is like. We need further study – urodynamics (which we get done in the next month or 2).

OK so I get the reason for ditropan, and I get that it is important to prevent reflux. But I don’t want to start a medication that is unnecessary. Oh and did I mention the side effects? Constipation (give me a break!!!) and over-heating, as well as dry mouth. And he won’t pee on his own.

I’m not entirely happy with our visit – in fact in kept me up at night.
What to do?!

Saturday, July 24, 2010

Yum!

So I've been a little bored with the food that I've been feeding Nickolas.
And I know that making your own food is so easy! I'm just a little lazy... Well not this weekend! 5 hours, 8 different meals and $30 later, a friend and I are now baby food making queens! So maybe we chatted a bit, and socialized

We started off with some recipes - our plan was to make one bowl meals that have meat, vegetables and fruits. And of course something that smells somewhat appetizing. Meats are a little tricky in that department. So we followed the recipes - and then got carried away. Towards the end we were just throwing the rest in a pot for a stew. But yummy turkey stew. And a bunch of vegetable/fruit combos.

My freezer is now suitably full of little containers that are marked. We already have success with pasta-chicken with spinach and apples.  And Some chicken-sweet potato-apple. How yummy is that?!
And to top it all off we have the ultimate in laxative meals. No more plain prunes or dried apricots (my specialty). We made a yummy fruit mixture that has dried apricots, dried peaches, prunes, apples and pears - and then we threw in some rhubarb (because we had it). Nickolas LOVES it!!!
And I love it to - because lately I don't think about anything that goes in without thinking how it will help with coming out!

Monday, July 19, 2010

Having a Sit-In

We saw PT today and she couldn't say enough about how well Nickolas is doing, and how much he has improved. He is definately in some kind of spurt. Not only has he grown 3 cm in one month, but just in a week I can actually see him sitting up straighter and having more confidence in himself!

He sat like this for almost an hour - without toppling, just lifting his arms a bit and playing with his toy. I was actually sitting behind him incase he fell (Kyle took this picture and I am right outside of the frame). I cannot even put to words how happy I am that he is doing this! Yay - Go Nickolas!!!

Kim (our PT) always says that it isn't really anything that she is doing - but it is the work that we are doing at home. We are still working on trunk control, and sitting on the big bouncy yoga ball (latex free), and sitting in the corner chair. He is cognitively problem solving and interacting with toys and just growing up so much in the last couple of months!


Here is a picture I took of him last week (July 13) when he started sitting up (and not toppling over), wearing his blue pj's. Then compare it to the picture that I took of him yesterday (July 18). You can actually see that he is sitting up better and not sitting so far forward. - It's not just me, you can actually see where his arms are.

video

I have a video as well, but I'm not sure how it will load - but here you go.

Friday, July 16, 2010

One Year

A year ago I thought I knew who I was. I was happy and had a plan and knew where we were going. Then BAM!

Spina Bifida. And our world tilted a bit. Not that much, just a bit. We are still heading forward and things haven’t changed that much. But a year ago I didn’t know that. No one knew that. All we knew was that our world had changed forever and we were trying to catch our bearings and see what we were looking at.

I keep a journal so it is very easy for me to read back and see what I felt in those days leading up to the diagnosis, but the moment the doctor took me into his office and told me that our child had spina bifida – that is ingrained in my memory and I don’t need to look it up. Maybe reliving it, telling the story from the beginning will help me to let go. I think the one year anniversary is important, the second year not so much. So here goes…

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 (the important part of the brain – well it’s all important – but the part that controls breathing ect). But all my tests had come back ok so I tried not to worry, I even told Kyle to stay home. So I was in ultrasound for 2 hours as they twisted and turned me, had different people come in and then went outside and talked in whispers as I lay in the dark with my baby and my thoughts. Finally they told me I could wait and talk to the doctor, and gave me some pictures.

I didn’t have to wait very long. I had my new blackberry and was sending messages to Kyle. But really what could I say. That I was waiting, and that I was very, very scared. The doctor called me in, this was someone that I had never met before but was seeing me as a favour to my regular OB.

The conversation – that I remember – went something like. “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. 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.”

I am not sure if there was more, it doesn’t really matter because that is how I remember it. This is what your baby has, you can terminate, and I’ll be back. I tried calling Kyle, thinking oh my God, what do I say?! I sent him messages but he wasn’t there. So I called work and talked to one of the girls there. Deep breath, ‘the baby has spina bifida and we don’t know what we are going to do’. I finally did get a hold of Kyle and he asked the question I was wondering. What does this mean and What are we going to do?

The doctor and I did discuss what spina bifida was, but I can’t really remember what he said. I remember quite clearly what he said two weeks later and that was that spina bifida meant paraplegia, total dependence, mental difficulties, diapers and just a hard life. And not just an effect on the baby and me, but Kyle, our relationship and on Katheryn. He wanted me to reconsider our decision – but I get ahead of the story. I left with an appointment to come back downtown the next day to meet genetics.

Then I had to fight my way back home during rush hour. Sitting in the middle of the subway (someone was nice and gave me a seat) thinking about what I was told, not being able to look into the future, not wanting to feel kicking and punching in my belly. Could I see anything, feel anything, do anything? No, I was stopped. Staring out the window at nothing with tears streaming down my face, alone in the subway car full of people.

I got stuck in traffic on the way home – yay for rush hour – it must have taken me over 2 hours to get home, but it felt that days. I called my parents at the cottage and my sister from the car. They all knew I had gone for an ultrasound and were waiting to hear that everything had gone well. But then I called and couldn’t talk, needing to take a deep breath and just get the words out. “The baby has spina bifida.” No more Nickolas, just baby. And give out the small amount of information that I knew. The people on the other side of the phone crying. Their world had stopped that day as well.
Kyle, Katheryn and I went out to a family birthday dinner, tried to act normal, not wanting to disrupt the happy occaision. I don't think that we succeeded that well. I know I was numb, just letting everything pass me by, a little blurry, a little grey.

Needless to say, Kyle and I didn’t sleep very well. In fact I think I got up that night and did some internet surfing. What is the first thing that pops up when you type spina bifida? Wikipedia – the horrible, scary site. I didn’t want clinical explanations of what caused it, or why. I wanted to know what to expect and what my child would look like! I finally found a site http://www.spinabifidaconnection.com/ that told me just what I wanted to know. I could actually see real-life children with this, and read postings from their parents.

The next day Kyle and I visited genetics and got some solid information. We talked about a neural tube defect, physical function, hydrocephalus and probably more. We wanted to know definite information. Will he walk, will he play sports, will he go to school? Will we need to find a new house? Do I have to quit my job to stay home? What about Katheryn. But we couldn’t get that information – they couldn’t even say where it was! Just an estimate, and some possibilities. We left that appointment with more information, more appointments and a bit more understanding.

The next couple days are a blur. Doctors, tests, questions and more questions. Going back and forth, what will we do? What are we looking at? I spent my 31st birthday at Sick Kids hospital and Bloorview Rehab hospital talking to doctors and getting tests done. And still thinking, thinking, thinking. I had it down, explaining spina bifida to family and what we were going to do. Everyone was very, very supportive. They were with us no matter what we decided, and not pushing either choice (to continue or to terminate). I am so profoundly thankful for this; I think I might have broken if there was any pressure.

For 9 days we saw doctors, getting tests (MRI, amnio) and reading; reading blogs, internet sites, and information packages, everything I could get a hold of. We made our decision on July 25th, Kyle’s birthday. We had talked about what was going on, what we thought of the information we were told, what we thought, how it would affect Katheryn. Worried about Katheryn and how her life would change.

I remember exactly where we were in the house when we decided. We each asked the other what they wanted to do. Pretty much at the same time we said we wanted to keep him. And that was that. We had Nickolas again.

Our world started turning again, we were pregnant again, and we started our journey with spina bifida. One year ago.

Monday, July 12, 2010

A perfect summer day

We spend a day enjoying ourselves by the pool. Nickolas went swimming - was alot happier that the water was a solid 80F and not 72F like the last time we went in the pool at grandma and papa's. My sister and I hijacked the pool at my parents house while they were away and brought the kiddies to play! Katheryn liked being near the water, but wasn't that excited to actually go in. But liked throwing and catching the ball that auntie Laura threw in from the water. And Nickolas just floated on by. With me of course. We had a floaty thing he lay on, but I didn't really trust it, and his life jacket doesn't fit him. It is too long and chokes him if we do it up - the oppostie effect we want from a life jacket! Uncle Mike came home and enjoyed the fun too!
I am so amazed at my brother. He is quiet and seems shy, but he has really stepped up with getting involved with the kids. He doesn't complain when I hand off one or the other, and carries Nickolas around like a pro. All we have to do is get him to change and cath him! (Kyle tells me that as a male it is harder to cath Nickolas).

The next day, since we are enjoying being outside. I thought Nickolas should have an upright view of the backyard. He's not sitting by himself, so usually he is lying with me on the grass, or sitting in my lap (where we overheat) and enjoying the outdoors. So we dragged his corner chair and enjoyed the grass, the hot weather and watching Katheryn run around like a crazy person. Until the hornets came back and scared mommy back into the house. I did have rescue BOTH kids and the chair in my 'race' back to a hornet-free zone. Katheryn couldn't understand why we had to go inside, but when a hornet landed on Nick's toys and there were at least 6 others that I could count flying around I thought I'd been pretty good up until then. I didn't pick her up and run - but I came very close. (I'm a little bee-a-phobic).

When I was looking at these pictures on the computer I couldn't beleive I had a red-haired baby!! But he really looks red here - usually he's more platinum blonde.

Nickolas is doing soo well with sitting. He was almost upright and reaching up for toys and could balance for a little while as well - I'm going to have to get a picture - even video of it. And when he starts to topple he catches himself! Not that he's ready to sit by himself, but it's a giant start!!!
Yay! Go Nickolas!!!

Friday, July 9, 2010

What does perfect mean?

The perfect child. This is what everyone dreams about.
When you get the diagnosis of spina bifida, you think that the perfect child is shattered. You mourn that perfect child, you mourn what could have been. I don't like admitting it (even to myself) but sometimes I wish for that perfect child. That I could have normal baby worries, that I could dream of a future without braces and assisted walking devices. That I could have the dreams and worries that my parents had about me. That is would be easier.
BUT...
What does perfect mean anyways?

Is Katheryn perfect? Yes, I think she is. With her tiny size, her puking, her language, her finicky eating. Yes I still think she is. Is Nickolas perfect? I do hesitate, (there are so many things to think of when I write this). Yes he is perfect too. With the spina bifida, with the worrying and the anxiety. Yes I still think he is perfect. And I don't think I need to defend this.

What does perfect mean anyways?
Is perfect the child that comes into the world, naturally, with that first cry, nurses no problem and then falls asleep, to wakes every 3-4 hours to nurse and be changed. The smiles at 6 weeks, laughs soon after, sits on time, babbles early, rolls over ect. Pretty much reaches all milestones on time without causing the parents a night of worry? What about beyond? Is perfect that 50th percentile child that isn't too skinny, isn't too chubby. Has all kinds of friends, comes in when the street lights come on, doesn't talk back, only has nice friends, loves school, loves sports and does well in both, is never sick, doesn't talk back. Wow, that puts alot of pressure on a poor baby, and parents.

What does perfect mean anyways?
For me, perfect means happiness. If I have a child that can grow up to be happy, then I think this means perfect to me. I don't always mean that smiling, laughing child (that is nice), but it goes beyond that. In school we learn about quality of life. A happy life. Perfect has such societal connotations to it. Why do things need to be perfect? Nothing is ever perfect.

So perfect means whatever my kids turn into. I am not perfect, not even close. But that doesn't make me any less loved and happy and myself.

Wednesday, July 7, 2010

But... I wanted to learn about SB

Anyone who followed my posts last month probably notices that I did a Learning about SB 'series'.
I've moved it to it's own blog. http://www.aboutspinabifida.blogspot.com/ it is also a link on the side of this page. I hope you enjoyed it!
I plan to hopefully add more infomation to that site. My final plan is to make up a powerpoint presentation that I can present. But I might be getting ahead of myself (surprise, surprise).

Update!

We had a couple of appointments in the last couple of weeks. All with good news.
Nickolas got the all clear from neurosurgery. We were in and out in 30 minutes. Everything is looking great and we will go back in 1 year and get a followup MRI at that time. YAY!
Physio is going well, he is improving so much. He keeps trying to sit up, work those abs, and when he is sitting up it is much more solid. He used to sit very far forward, with his belly resting on his legs, now he is still leaning forward, but off of his legs and twisting around. All very good progress.

Katheryn got her language assessment. She got admitted to their service. I was concerned that they were going to say that she was ok. I know it sounds weird, that I want someone to say that my daughter is behind in something. But when they recognize it, it gives us help. So we had the assessment and Katheryn's language is at a 21 month level - 6 months behind. I'm amazed at how much she has improved in the last couple of months. And I am very glad I asked for an assessment at 18 months - when I found out that she was a little behind - because after an 8 month waiting list we finally were seen! But now the real work starts!

Whenever I think about how I want Nickolas to sit up by himself NOW, roll over more, start to crawl ect. I want it all now. I'm finding we are progressing, just not fast enough. But it will come. It is the same with Katheryn's language.

So yes both my kiddies gotta get some kind of therapy - my mom tells me that I went to speech therapy, and she is so much like me that I'm not really that surprised. Or worried. I guess that is the key, when to be concerned and worried and when to take things in stride and just go with the flow. We are busy flowing down the river right now!

Sunday, July 4, 2010

Family Time

We need to schedule some family time, I guess with Kyle being home so much we always have family time. But we needed some stay-put family time. We are a bit over-booked as things stand anyways. So we had relaxing no-travel time for a couple of days and just stayed home and vegged. Of course by vegged I mean, I tackled the gardens - where weeds have taken over, vaccuumed, vacuumed again, did laundry, cooked, and packed for the next trip out of town. Because we are really busy on the weekends, cottaging, visiting, and our latest trip was to Ottawa for the weekend.
But then last weekend we headed to Ottawa - a 4 hour drive, for a surprise party, visiting time - and then heading back home again. The trip was very fun, we love visiting our Ottawa family. All of the kids get together so well. The kids did well on such a long trip, even Katheryn was able to travel puke free. She inherited her car sickness from her Daddy and so a 4 hour car trip was met with a type of dread. But some gravol and careful driving and things stayed where they were supposed to.


 Nickolas got his first taste of chocolate cake. Katheryn enjoyed feeding him from her (2) peices of chocolate cake that she had stoled from various plates. He really enjoyed the crumbs that he got. But was a bit shocked that he got caught!

I'll have to upload some other pictures. We stopped off at Tweed on the way home so that the kids could have some out-of-car time. It was just my parents and me and the kids because Laura, Mike and Jen decided to get lost. But Tweed has a nice lake beach that Katheryn loved running in and out of, and Nickolas just lounged under a tree, doing - what else - eating.
They had alot of fun (during the day) - and that's the important part. The night was a bit of a treat - think Katheryn getting caught under the crib, screaming for a couple hours, Nickolas waking up. I think we scared Laura away from children for a while. But we did get a couple of hours of sleep. And would totally do it again - hopefully without the rolling!

Friday, July 2, 2010

Golf Weekend and Canada Day

It was the annual golf weekend. Pretty much where we have fun, hitting some balls and hope they get within a fair distance of the hole. We (our team) is not there for the glory of the game. We are there to have fun with the cart, drink alcohol (well the other girls did) and an excuse to just have fun! We succeeded - we got 7 over!!! Kyle and his team won, with 3 under. So Nickolas got to wear the trophy hat! We have a picture of Katheryn and Kyle doing the exact same thing. - Kyle is a much better golfer than I am.
So Nickolas the flirt was in fine form. He was the centre of attention and LOVED IT! Being surrounded and adored by a bunch of blondes (yes I still think of Laura as a blonde even though she's a red head now). But batting those huge blue eyes at all the girls! And he knows he has it too!
We stayed at the cottage for 4 days, and it got nice and sunny and hot while we were packing the car! But it's nice being at the cottage, fresh air, family. And the kids just eat it up! They still enjoyed the water even if it was a little cold for the adults. We had a bit of a rough first night - mostly because Katheryn rolled off her bed (which is on the floor) and got stuck under our bed. Nothing like being woken up at 3am with a screaming toddler, and you are scrambling around in the dark and all you can feel is kicking feet sticking out from under the bed!!! Once I got her all calmed down, Nickolas woke up. BUT other than all of that, the weekend was nice and relaxing.
Here are some pictures of them just playing together. It is so nice that Nickolas can sit around, either in his bumbo or corner seat and then Katheryn is so much closer to him, he can be part of the action and the action - in the form of Katheryn - is not very far away from him.

Because I'm so late posting - I might as well include Canada Day as well - it seems all the days go by so fast that if I don't keep on top of my blogging I just need to squish everything together.

Happy Canada Day everyone. I took some days off to deal with some kiddies that were a bit tired and grumpy. We missed fireworks because Katheryn was a bit under the weather. But she's still young. We'll just have to have some fireworks for the August long weekend! Nickolas didn't really care either way. I don't have any Canada Day pics of Katheryn, but here is Nickolas wearing his red!