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!

Friday, December 31, 2010

Merry Christmas! Part 2!

Christmas morning!

The kids weren't quite sure what to think about it. Katheryn, who had already had time-outs for opening presents that were under the tree in the week before, wasn't quite sure what to make of a pile of presents in her stocking.
But they warmed up to the idea that these things were for THEM!

Katheryn liked  putting everything in her mouth - which made Nickolas laugh like mad! Nick just liked whatever he could look at that Katheryn didn't immediately claim as her own!
You probably can't tell from the photos - you can hardly tell in-person - but we have themed pj's. Katheryn and I go together (mint-green with reindeers) and Kyle and Nickolas go together - (blue-mint-green plaid). Maybe if you squint they go together?! I couldn't believe how hard it was to find something that went together and didn't cost alot of money! Next year I'll have a better plan!

After breakfast and presents we headed to my parents house for Christmas. Kyle and Katheryn (who weren't sick) were also able to visit his parents, but the rest of us will be there for back-up Christmas on New years!

 Nickolas had a long day, and passed out before dinner (he REFUSED to nap before that!)

Katheryn those the Christmas crackers with the hats and whistles and toys were the best thing EVER! She kept changing the colour of her hat.

 And once Nick got up, he got a hat too!

And because it was Christmas, we had to show off Nick's standing! Yes, that boy will let me put anything on his head! (Just long enough for a picture)

At the end of the day, what says Merry Christmas better than a reindeer underneath the tree?

Sunday, December 26, 2010

Merry Christmas! Part 1

So somehow Christmas snuck up on us this year.
Not really sure how that happened.
Actually that's not true, I know exactly how that happened. Life happened. Unexpected things happened. My nice and orderly thought out plans did not happen. And time still ticked by.

But oh well, what can you do.

Except hold on and hope and pray for the best, and enjoy what you get.

In the meantime, I'm really glad we got our Christmas pictures done early. I'm glad we got everything done early, because things just stopped. So here is our family Christmas pictures - I'm still shocked that we did get some with both kids looking at the camera and showing something that could resemble a smile.

Let alone a picture where mom and dad AND kids are looking and smiling, and don't look like dorks!

Christmas did come and go, and I did have my camera, but not at the level we usually have pictures.
We celebrated a sicky Christmas. Not anything bad sicky, just normal sickness. But 3 weeks of various children and adults in the household having fevers and sniffles and coughs and aches and pains... well you get the picture.
But we were together. And family that we weren't able to see we can make up for when we are all better.
It wasn't the best Christmas ever, it wasn't the worst. I guess we will just have to keep celebrating until the next holiday season to make up for it. (Now that we have energy and are medication-free!)
More pictures to follow!

Tuesday, December 14, 2010

Our community

Sometimes I feel alone, and other times I feel like I'm surrounded by other mothers who know EXACTLY what I'm feeling.

I have been so blessed to find a large amount of online support.

By reading other parents blogs (I follow a large number of them), I feel that I actually know these kids and parents. I can recognize them, both in person and their stories, I can really understand the challenges that they are facing (the parents) and feel that they know what I am feeling as well. At times that it all that can be offered, the feeling that someone else has been there and done that. And that I can say the same thing and pay it forward!

I cannot say enough about the support that I have been able to find online (not to say that I don't get support in real life). I remember reading some of the stories in those first couple of scary weeks. And I found it so amazing to see these kids living their life, when I was given the choice to not let this happen to my child. It showed me happiness and silliness and normalness with spina bifida just tagging along.

I think the first blog I ever (and I do mean ever) read was Leigh's about her son Greyson. Leigh was one of the first to say how hard pregnancy is - that it is the hardest time. But you don't quite believe it until you are past that. I'm sure I found others. One of my favorites to read is by Joanna about her son Jet, not only do you see beautiful pictures of big moments and small, but she writes so wonderful as well.
It is really inspiring to go back to the beginning, that first blog post and see how far families have come from that moment to this.

There are some blogs that really touch me, and I can't wait for the next update! The one that immediately comes to mind is the one written by Jill about her family and son Kingsley. I see my family reflected in her family so often. Kingsley is 2 months younger than Nickolas, has 2 older sisters (one Katheryn's age) and then live in Southern Ontario! Stefanie and Zachary also live in Ontario, and I've actually be able to meet them!! Zachary is a couple of months younger than Nickolas and goes to Bloorview and Grandview just like Nick. We were able to meet at a mom and baby group at Bloorview. Both these kids are about the same age and level as Nickolas and we all live in Southern Ontario. It's amazing to watch how they have grown with us! To see where we were and where we are now.

I have always had a hard time with names and faces, but I have definately been tested and passed over the last couple of months! I saw Katie on a children's show - I actually called Shannen (my sister in law) into the room saying 'look, I know that girl, her name is Katie, I follow her mom's blog!'.

There are kids that are the same age as Nick, some who are older and some who are younger.
It is really nice to read about kids the same age as Nickolas. Even though I still have to be very careful not to compare (can't help it - still do). It is very nice to follow Karen's blog about her son Carson, he is just a couple days older than Nickolas.

The older kids help me to see the future. Like from Caleb and his mom Cassie. Caleb is 5, and Cassie is an avid blogger, about Caleb and Benjamin - her younger son. She has also introduced me to alot of other kids with spina bifida, when she celebrated spina bifida month in the US by showing us various faces of spina bifida - 69 kids in total! Colleen and Nate are another family I love reading about. Nate is 4 and has such an amazing personality! Colleen also runs the baby center site - but more about that later. She is also involved with the SBA (the American Spina Bifida Association) and is very knowledgable!

I've gotten the privilege to 'see' a number of kids born - including Lane, Charlie and Zoe and the newest editions are Kemper and CeCe. As I've hoped and prayed and sent good happy thoughts on the day and weeks they were born.
There are even some kids that are still waiting to be born, like Lauren and her baby boy. It is very satisfying to see people who are right were you were, so lost and confused, and be able to help them, offer the ear to listen and some words of support. And to watch kids grow! Like little Jacob, and gorgeous Ruth! I have learned alot of what it means to be choosed to have prenatal surgery (MOMS study) as Kelly chronicled her experince with Greydon and continues to blog about it.

Everything has helped me to learn more about what it means to be the mother of someone who has spina bifida, and how it impacts not just him and me - but the whole family. Actually it has shown me how much life is not impacted, but just goes on.
There are also families with twins! I can't even imagine!! Holli and her twins Alexander and Nicholas were one of the first blogs I read as well, Alex has spina bifida. There is also Heather and her twins Braelyn and Gwendolyn who are just over 1 year old, Gwen (easy name for me to remember - has spina bifida). And a newer read is Bin and Oaxie, where Bin has spina bifida. Candice just started a blog, she has 2 kids with spina bifida, Kennedy and Marcus; Kennedy is her 14 year old daughter Kennedy and they just adopted Marcus who is one, as well as their other 3 kids!

Recently we got Nick's standing frame. And I knew I had seen one just like it. Yes I had, Madilynn! makes me feel that we are headed in the right direction. Recognizing words and tests and equipment and sharing the adventure of those who are ahead and behind us.
I remember the first time I saw James David's blog, his mother Brittany has his battle scar in the title. I love it!

All of these kids get around their own way, and a variety of different modes. It really helps making scary things like equipment and wheelchairs not so scary. Nate and his red wheelchair have really shown me that it isn't something to be afraid of. That is empowering!
When moms are celebrating, I celebrate with them - like when Tanner got up in his walker, and Kaitlyn crawled, or Emma stood up! When mothers are down, I can help to lift their spirits, or at least know that I have been there too and come out of it. When some moms feel down, I know exactly where they have been - and know that I have bounced back up.

When our kids are sick with various problems associated with our journey, we are the ones that don't need things explained. And can offer or hear some advice that worked in the past. And when they overcome the problems, we can see them perk up as well. Like Annabelle and her mom Nicole, who have struggled with UTI's and surgeries and you see how sad they look when they are sick, and then how happy they are when they are better..

Some of the mothers who really seem to know what they are doing (and probably are laughing if they read this - I know I do when people say I seem all put together).
There are so many parents who try to do something to educate others about spina bifida. Kari has a number of websites that help with this. There is the spina bifida kids where there is alot of general information as well as guest bloggers. She also has a very extensive list of other blogs. Kari also has a blog about her son Toby. And if that isn't enough Kari sells some great spina bifida awareness stuff through her store. I have bought a ton of stuff from her! Kari sold the Redefine Spina Bifida shirts (that Leigh's husband Andy helped to design) that we got in November, as well as the spina bifida neclace I wear.

There are other blogs I follow too - I hate forgetting anyone!
I started reading Erica's blog (her son is Roman) when she talked on our baby center site about a careless comment made about spina bifida to her mother. Blogs are definately another way to vent after getting those careless and hurtful comments! But Erica's blogs are usually quite funny - always good for a laugh!

Oops I did forget one important blog! Misty is an adult with spina bifida. She writes about her thoughts and experiences with spina bifida, and a completely different perspective than I get from mommies and daddies (and very, very important).

Most of the blogs I follow are from the States. All over the states, a couple in Canada and one overseas.
But online support is more than just blogs.
It is facebook, where I have connected with mommies that don't have blogs and seen their kids grow through status updates. Like Lysette and her daughter Lyla. They have a caringbridge blog. Good idea in theory - but I can't get updates through my dashboard (which is how I keep track of everyone). Anyone out there know how to do this - I'd love to hear! I actually know 3 kids who have caringbridge blogs, but can't follow any of them without going to the site.
Facebook actually has a very interesting group called United by Spina Bifida. This group is something that I hope to explore more, when I have time. There are many groups, but I like that one.

There are 2 forums that I visit quite frequently.

The first is Spina Bifida kids through the Baby Center site, which is quite fast moving and full of parents. It is extremely supportive and is the source of both the Day of Prayer we had in October and the t-shirts we wore here. It is also how I've 'met' alot of parents. Especially when they do a roll call!

The other forum I am part of is Spina Bifida Connection. This was the first site that I found when I was pregnant! And when I say that it is a life saver - I really mean it! It has adults and new parents with spina bifida who are members, and each member has their own profile page where you can post pictures and have friends throughout the site. You can also see who has posted what and a little bit of statistics inluding location. So when I say that this is an international site - I mean it. Canada, US, Great Britian, Australia, South Africa just to name a few.

It is the spina bifida connection site that gives the most hope. The clearer picture of what a future holds. Whereas the Baby Center site allows me to ask all of those pesky questions and voice my concerns. Like 'is this normal?' 'should I go to the ER' or always 'another poop question' and within a day you should get tons of helpful and encouraging answers.

So what is the first step for parents who are so lost and confused and looking or support? Hopefully I've done alot of work for you! But I found most of these blogs through SB Connection, SB Kids and Baby Center as well as by blog jumping reading one mom's blog, then looking at who she follows, who they follow ect. I have also contacted the Spina Bifida Association of Ontario asking if they were interested in doing a feature on online support and blogs. They do have a forum on their site, but it runs very slow. When I have gone on, I have usually been the last one to post. But I have 'met' 2 people through their site. Jennifer and her son Jake as well as an adult who lives in a nearby town.

 I have also discussed online support and information when we meet monthly at our Spina bifida group at Holland Bloorview. We meet once a month. It is very nice to have that in-person support, but online you know you can probably get someone at any time of the day or night!

So what promted all of this very long and boring without-any-pictures post? (That I should mention I have been working on for 2 weeks!)

There have been a number of things going on in our community. First there was Kingsley. Kingsley went through a very different couple of weeks, with a decompression surgery and his recovery - he is home and where he is supposed to be - but he and Jill were in my thoughts constantly leading up to and during his hospital stay. This was also reflected in the support on facebook and other blogs as well.
And then there is Shea. Shea is a little boy who is in the Ukraine and was born with spina bifida and is up for adoption. Not so simple when children with special needs are difficult to place for international adoption and the alternative is heart breaking, especially when what Shea was born with, is the same that Nickolas and many other of our kids have been born with. Only our kids were born to loving families that have taken up the challenge. Joanna has been working tirelessly in the last couple of weeks (has it really only been since Dec 1) to raise awareness about saving Shea. And a lot of people have taken up her call for support!
Her fundraising has been to raise money for Shea's adoption. This means that a family (and there is one!) that is interested in adopting Shea has help to raise money ($25000) for his adoption.
All of these women and children and families I have thought about and prayed about. I have seen myself in thier words, and yes been glad I have not yet had to face some of the hurdles they have faced. And I have been jealous (even though I try not to be) when they have been able to accomplish things that we are still working on - but have still celebrated these achievements!

I love finding new blogs - I've recently added a couple of them - Vince, Joshua and Silas - and looking back and seeing all the trials parents and kids went through - and how well they've come through! For any parent or just anyone who reads my blog and they are looking for support, or are just lost an confused I hope that you have been able to find something in this post to help you. Also I would love it if you contacted me amanda_in78@hotmail.com. I know that there is one new mother in Toronto who recently gave birth to a child with spina bifida, whose friend knows my mother, Gwenda Bartley.

For now - thank you if you made it through this whole thing! It kind of got away from me!
BTW all kids names should link to their blog - somehow the color disappeared.

Monday, December 13, 2010

Out come the scissors!

Someone was in need of a haircut!
When it started to go below the eyebrows - I knew we were in trouble! So out came the google search engine. I really didn't want to screw this up. I was very nervous about becoming a hairdresser for the first time. But also excited to add those first locks to my baby journal!

 Hair cut in progress.
Had to bring out some big toys to play with. Nick was much more interested in looking at what I was doing! (Funny fact - I had to crop out this picture - when I posted it here I noticed that Katheryn was jumping up and down on the couch naked)

Still in progress - note the blanket on the back of the chair (the one meant to be used as a cape to keep the hair off the clothes). Now note all the hair on Nick's pj's.

All done!

I guess I should say 99% done - I spent all evening touching it up - including the lock right in the middle of his forehead! I did take a bit more than I thought I would off.

Then it was Katheryn's turn!
I did say that this was the first time I had done this. Yup this is Katheryn's first haircut too. She's only 2 1/2+ I guess it's time to take the tiniest little bit off! (I think I took about an inch - maybe less)

I did not get an after shot of Katheryn. She was too traumatized and needed some Daddy cuddles.
I was a little worried that cutting Katheryn's hair would take away her beautiful ringlets. But I'm happy to say that is not the case.

So there are all the fresh cut kids!

Actually I cut Kyle's hair the week before.

And everyone is safely recovered the next day. Ready to show off their super cute new do!

Sunday, December 12, 2010

Up, up and away!!! Part 2

As promised in part 1 - here is Nick showing off how happy he is in the standing frame!

And of course mommy had to grab a picture of herself with her standing baby boy!

It took a couple of days, but Katheryn finally got to see Nickolas standing up too! She thought it was great! 

 She loved that he was (almost) the same height as she was! She could run around him and tickle him and hug him! Please ignore the messy faces

Just hanging out!

This is  how excited Nickolas has been getting when he's standing and playing! He doesn't like clapping (but he finally did it!), but he gets so excited he clasps his hands together!

He is like this for most of the time he is in the frame. We have him in it for 30 minutes a day, and can increase it by 5 minutes to a max of 60 minutes. He lasts the entire time, and we only take him out when the time is over.

He gets really tired when he's in it, just shows it's working.

The bonus (for Nick) of being upright? He's at a perfect level to do this!

Thursday, December 9, 2010

Up, up and away!!!

And the day arrived for Nickolas to get his first piece of equipment. And I wasn't quite sure how I felt about it. I was excited for him to be able to be upright. I was afraid he wouldn't like it. And I was nervous about the idea of equipment - something that broadcasts that he needs help, that he is different!
And at the same time, knowing that this would actually help him be where he is supposed to be - standing - to help with those developmental tasks. That this was actually a really, really good thing. That was my rational side - but who ever said that motherhood was the same as being rational!
I had a picture in my head of something large and metal with lots of straps and stuff.
Googling standing frames and infants did not help, I just couldn't get a picture in my mind about what we were going to come home with.

But the day arrived, and Leslie the orthodics guy came out, with this little tiny metal and foam thing. And that was it!
First we did the AFO's. These are solid plastic braces that give support to Nick's ankles. They go from below his knee and extend past his toes (for growing room). I think these will last us a year before we get new ones. At first Nick wasn't quite sure what these things we put on his feet were.
But then he decided that they were ok. He is only going to have them on when he is in the frame, not when he's crawling around. But he seemed to think they were great.
Then it was stander adjustments. This is something that is personalized for Nick. So it is all the right height and width and everything for him. It was marking where his feet are going, where the strap around his chest is going, and that the foam for his knees were the right diameter and placement.

After that, Leslie left to make those adjustments and Nick and I just waited in the room. Nick decided to explore some of the room. He was looking out the window (I positioned him here - he didn't pull himself up) but was really happy looking at all the cars and people out there (not too much snow). And I figured it was a pretty good time to take a mommy and Nick picture.

With the AFO's and the frame, we want his skin to be covered, but have no fabric bunching up. So under the AFO's he just has socks that come all the way up. And no bulky jeans or pants with the frame. The baby legs are perfect! Thanks to Sara (a fellow  SB mommy - Ruth's mom) and her leg warmer contest  and her online store http://www.babysnazz.com/ Nick had the perfect thing to wear with his standing frame. I LOVE these leg warmers!!!

So finally Leslie came back and we were ready to go!

And we are up! Whoa


Nick wasn't quite so sure what was going on.

Then he dropped his tiger! I could see exactly what he was thinking! Oh crap! How am I supposed to get that now?! But he actually stopped fussing when he was thinking this over.

The solution!

Had some last minute adjustments. If you notice - Nick's belly is hanging out of the elastic chest strap - that was most of what we had to change - now his belly doesn't hang out.

So we are all ready to head home. We had to pay for everything - I could not believe how much these things cost! Luckily the government pays for 75% (ADP - assistant device plan) and our insurance should pay for the rest. But they were $2000 each piece! We only had to pay $500 each, and insurance will reimburse us. I guess I shouldn't be that shocked. Everything is so expensive.
The standing frame is so portable - I just hooked it over the handle of Nick's stroller and off we went!

Nick had to check out his new equipment. He really liked how blue everything was!

On the way home we needed to stop and pick up some shoes that fit over the AFO's. Size 8! I guess that makes up for his teeny tiny feet! (I think they are really size 3). But they fit pretty well over everything.
I am actually pretty psyched that he has these now. They look great, they help him. AND he likes being in the frame - more pictures will follow.

Monday, December 6, 2010

Finally a post! and an anniversary

First of all I want to just say that I have not been ignoring my blog. I’ve hardly posted anything in the last 2 weeks, but in the meantime I changed my photos and layout. AND I’ve been composing blog posts in my head, along with taking lots of pictures for various posts. And I have been editing 3 posts that are just not ready to be published yet.
FYI when I finally post those - I'm going to adjust the dates so I don't have 3 or 4 posts all in a row - so look back at the end of November.

So those are my excuses and I’m sticking to it!

In the meantime I’ll leave you with a couple of pictures.

If I ever need to think about how far we've come - this is definitely proof!

We just celebrated our 1 year anniversary of Nick's shunt placement (at 3 weeks old). I blogged about it, but Nick was home for 5 days before we were headed back to the hospital to be readmitted and to have brain surgery in the morning. I remember it like it was yesterday...

In the scheme of spina bifida related surgeries, the shunt placement is probably the easiest, but the most stressful. Alot of stories of shunt placements are just like ours, finally getting home, getting settled and then needing to return to the hospital. The actual surgery only takes 1 hour. But I learned that a one hour surgery does not equal a one hour wait time. I waited for 3 hours in that horrible waiting room, exhausted and worried and just waiting for Nick's name to appear on the computer screen before we were told he was in the recovery room. My father waited with me. I probably would have been a mess without him.
We did find out that alot of the waiting time was trying to get another IV in Nick (he went through ALOT of IV's). But at the time I had no idea. Now I know for next time - because with spina bifida there is always a next time. I really didn't like his shunt scar - now it's covered by hair and no one knows it is there. And Nick bounced back so well from the surgery.

We were told that if he can go 1 year without a shunt revision (needing to change the shunt - usually because it gets clogged or infected) then chances are it would last. What last means, I am not quite sure. But we had it a year!

Monday, November 29, 2010

O Christmas Tree…

Every year we pick out the most beautiful Christmas tree. And after we defrost it’s time to decorate!

I don’t really mean we. This is more of a mommy job. Kyle is in charge of putting up the tree, lights and angel/star (depending on who’s year it is) and he brings up all the boxes of Christmas stuff.

Katheryn liked that we had a TREE in the house! And playing with the branches that were taken off.

Then I take over. Decorating the tree, decorating the house, listening to Carols and teaching the kids all my favourites.

Katheryn thought the tree was great! Especially when we put all this stuff on it! That she can pull off and hide all around the house. At the moment we have most of the decorations on the top 4 feet of the tree, not so much on the bottom 3 ft.

And Nick is happy to play with whatever he can get his hands on! And by this I mean crawling over to get whatever he can get his hands on. He is army crawling all over the place! And sometimes getting his hips and knees helping as well.

So it might look  like Katheryn is helping to decorate - but really it's the other way around. She LOVES those candy canes! I've actually taken off the hooks so she can carry and collect them around the house.

So this is the finished product!

 And a couple of really happy kids! Even if they do look kinda goofy in these pictures!