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

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.

Pamphlet - to view click on full screen

Pamphlet - SWRR

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!

Bath Time

I thought this was a good time to discuss bath time. When you have 2 kids and need to do 2 baths it is not very time smart. But not any more. Yay! I can finally bath the 2 kids togethger. No big deal right? Why couldn't I do it before? he was too small (yah right), he couldn't sit by himself (he still can't), Katheryn doens't want to share (with her brother - always). Nope it was a poop issue - but I'll get to that later - [actually I moved it to another post]. I had to take out the rubber mat in our tub (I'm not sure if it has latex), or in this picture I covered the mat with a towel.

Katheryn loves having a bath with her brother. She helps me wash him, and shows him how to play with toys. And he just lies or sits there and kicks him legs. Just kick kick kick. (He doesn't actually straigh leg kick, but he frog kicks.) But yay for bath time!