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!

Tuesday, June 29, 2010

Happy and Healthy Baby Boy!

We had our neurosurgery appointment this week.
2 hours to get there, 30 minutes appointment - no waiting, and 2 hours to get home. We did the subway experience, and I wore him down and then carried an umbrella stroller - which I didn't really need. Everyone in the subway thought he was very cute.
Anyways, we got the A-OK!!! Everything looks great, we'll see him again in 1 year and get another MRI. Sounds great! So I'm officially labelling my kid. Yup, he is a happy, healthy baby!

Sunday, June 20, 2010

The Walk!!!!

From Left to right - Kyle, Gwenda, Laura, Michael, Lisa, Amanda, Nickolas, Cheryl, Marie, Shannen and in strollers Katheryn and Nickolas (the others stayed off camera)
We had our Spirit Wheel Walk Run yesterday. And raised over $2400!!!! I still have more donations coming in, and won't have a final amount until the beginning of July. To say that I am surprised and flabbergasted by all the support we have received would be an understatement. Our goal had been $1000 and 10 walkers and we ended with 12 adult walkers and 4 kids in strollers.
Thank you to our walkers:
Amanda, Kyle, Katheryn and Nickolas Ridding, Gwenda, Michael, and Laura Bartley, Marie, Shannen and Madison Ridding, Lisa Aubertin, Cheryl Parsons, Mike and Devon McDonald and Andrea and Zivah Smith. My father Gord Bartley decided to sprain his knee 2 days before the walk and wasn't able to make it. Katheryn, Nickolas, Madison and Zivah were our junior walks, but enjoyed the ride in the strollers.

We walked along the Durham lakeshore, from Liverpool pier to Rotary Park in Ajax, and then turned around and walked back. The weather was.... interesting. It was hot and sticky, but nicer once we got a breeze from the lake, and then it rained off and on, but usually just enough to cool us down and put on rain jackets, before needing to take them off again. Afterwards we went to my parents for a party and the sun was out and we relaxed by the pool. And had a couple of dips as well (sometimes as a result of a couple of bear hugs).

So this is the kid we are walking for? He was wearing his shirt that says This is what Spina Bifida Looks Like. And he smiled and blew bubbles the whole way!

Sister Katheryn is celebrating the walk with the rest of us - with her lei's and pinecones.


I'm already thinking about how we can do this for next year! (I think doubling the walkers and the amount raised is a start)

Monday, June 14, 2010

Celebrating

Yes I'm upbeat and feel like a little celebration today. Any specific to celebrate? Not so much. Just celebrating being with my family. It's nice to have some normal days and not be so caught up in the turmoil and worry that seems to take up our lives. So today I am celebrating nothing, normalacy.
Nickolas is doing well, we went to the doctor  (regular check-up and shots). He is 22lbs, 1 oz! Time to upgrade the car seat.
We've got Nickolas a new chair from physio. It's called a corner chair and is meant to let Nickolas sit, but also get his hands free so he can play with toys. It kind of looks like he's sitting behind a big business desk, and he can sit behind it and make plans for Ruling the World! (evil laugh). Katheryn likes it as a place to put her dvd player. It is on loan from Bloorview Kids for as long as we need it.
This just shows an example of how we spend our day. Katheryn tries to jump from as high as she can get (the top of the couch) and Nickolas watches and laughs at what she is doing.

Tuesday, June 8, 2010

We have ROLLING!!

Finally after alot of work and enticement, Nickolas decided to grace us with rolling over.
I explained to him that rolling over was very important, and he was starting to make his mommy worried. Also Kingsley (a fellow baby with spina bifida) has already rolled over and he is younger! So after much consideration, Nickolas decided to give it a try!

Seriously though. YAY!!!!!!!

Nickolas is a bit of a bigger kid, has some extra padding that he needs to haul over (but I love all his rolls and dimples). He also has a huge scar on his back! It goes all the way over to one side, and with the scar comes a scar to muscles which means that he is starting from a negative to get strength and control of his trunk. This is physio paying off.


This was all I got and then PSYCHE! Back up - but he did it off-camera

Saturday, June 5, 2010

I'm blessed with such happy children!

Yes I'm blessed! I don't know how, but Kyle and I make really happy kids!

That is a blessing because sometimes I'm not too happy, some days I'm just really grumpy. I don't really want to be the mom that is yelling, but sometimes I'm ready to blow my top. But then I need to take a deep breath, and smile at my kids. Becuase we really are blessed to have them.
Some days I'm just really stressed. Wanting to get things done, have a clean house, healthy meals, time to myself, time taking pictures, time blogging and/or writing in my journal (I do both), time fundrasing, time with each child, reading time, physio time, family time, driving time and relaxing time. There isn't enough time in the day, and I'm really trying to concentrate on what is important and ignore the rest. Well, you can only ignore a dirty kitchen for so long until that makes its way to the top of the to do list.

Ah well, we are where we are. And I'm actually glad to be where I am. With 2 happy kids.
I don't know if I'm mentioned, but now that Nickolas is smiling and happy and laughing (omg that belly laugh!) Kyle and I look at each other and say "This is the child the doctors wanted us to terminate".  Maybe wanted us, is a little strong, then again maybe it isn't.
This happy go lucky child who just loves everything and flashes a huge smile when he sees you. Who hardly ever cries (except during physio or when he's hungry) and especially loves his sister.

Wednesday, June 2, 2010

June is SPINA BIFIDA AWARENESS month


Hi everyone,
It is my first spina bifida awareness month. Anyone in Ontario may have noticed that at liquor stores there is a tin by the cash register asking for donations and awareness of the importance of folic acid. I had vaguely noticed these before but never really paid that much attention to it. Well now I do.
Folic acid [sorry Jill I have to mention it] is believed to decrease the chance of spina bifida occuring (not always - as I was taking prenatal vitamins when I got pregnant). And the folic acid initiative has been shown to statistically decrease the incidence of neural tube defects.

This time last year I only had a vague idea of what spina bifida was, and was pretty much limited to checking babies backs in their assessment and someone I met during my clinical placement, who was living in her own home with 3 kids and needed help to get around. Well that has changed and I hope that it has changed for many people that Nickolas and I have had contact with. My hope is that spina bifida will become a household name similar to other (and less common) birth defects such as Downs Syndrome and Cystic Fibrosis.
Yes spina bifida is the most common birth defect in North America (about 1 in 1000 births) and that does not even consider those babies that are terminated. But spina bifida is not very well known among the general public - think about your first thoughts about spina bifida.

So I'm going to take this month as an excuse to try to make spina bifida a household name. The main focus of the month is going to be preparing for my Spirit Wheel Walk Run, June 19. This is an event that was created by the Spina Bifida and Hydrocephalus Association of Ontario, but that is actually run by individual families. My event is a walk along the Pickering Lakeshore for 3 hours with Nickolas' Loved Ones - our family and friends.
To prepare I have talked to family and friends, made up a personal pamphlet with information as well as a poster that I posted at work (and apparently was not clear that it was about me and Nickolas). But here is the final stretch. Not only to do I want to raise funds, I want to create awareness. I want to shout from the rooftops - My Son has Spina Bifida and it is only One Aspect of Who He Is. He is a wonderful, happy child who will have difficulties in life (yes everyone does). He is what Spina Bifida Looks Like.

Education and awareness is my goal for this month. I'm hoping to put some educational material on here this month - as well as my up-to-date, what-is-going-ons. I've moved this to it's own blog at http://www.aboutspinabifida.blogspot.com/ which is also a link on the side of this page.

I'm going to try to post the pamphlet I made up - it's a pdf file. And of course all my wonderful pics of my cutie-pies!