Physio

We've been going to physio regularly. Doing some trunk control and head control exercises. We go down to Bloorview every week. It's a bit of a trek (1 hr there and 1 hr back), but we have seen that he is doing good with his exercises, he gets a good work-out and then we have exercises to do at home.

Have I mentioned how happy and laid back my kid is? He is great, he has an extremely nice temperment, hardly ever cries (in public). Just smiles and laughs and raspberries to everyone. This would seem like something positive. And IT IS!

Except when we are trying to do physio. We want him to work and he doesn't really want to.

There is one exercise that we do where he is supposed to straighten himself up from a 90 degree angle, so I'm just holding his thighs and he is hanging forward. Well he is content just to hang there, as if saying 'yup this is where I want to be'. And I can call him and try to get him to straighten up, but nope, he is working to stay right where he is. So we take a bit of a break. Some days he'll do his physio, we have a bunch of different exercises, but then other days it's as if he is trying to say 'make me'.

There are some exercises that are hard for me to do - if you look at the picture it includes holding up a 20lb kid so he can bring himself up. Sounds like a job for Daddy!

This is typical of Nickolas, fighting really hard NOT to work.

Poor guy.

But we can see how much he's improved sitting up better and holding his head straight and just holding himself straighter and better. Our PT says that everything comes from the trunk (which makes sense) so we don't concentrate on the legs or feet (yet) is all starts with proper trunk control.

Zoo Time!

It's our annual girls zoo day!

A  group of us girls (and kids once they came along) go to the zoo every year. Katheryn has really started to have fun when we go to the zoo. Not only were there other kids she could play with, but there were all these animals!

We brought the double stroller, but neither kids were particularly interested in riding in it. Nickolas want to be held and Katheryn wanted to run around. Luckily I brought my wrap so that I wasn't carrying Nick around in my arms. This wrap is a god-send. Katheryn loved it, Nickolas loves it, and I love it. The only problem is that sometimes we'll over heat. But in the middle of May, in Ontario that isn't usually an issue. Well, not this year.

As you can tell from the picture, Nickolas enjoys the wrap so he can watch what everyone is doing, and stick his tongue out at them. His favorite new sounds - raspberries. And Katheryn is very happy to help.

We've gone to the zoo a bunch of times this year, it's a really nice outting with the kids, they can look at more than just the same old walls or fencing and see animals up close. Katheryn is still learning on the names of the different animals, and who wants to look at pictures in a book?

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I remember when we used to go to the zoo and the pics were all about us. Now, forget about us! All the pictures are of the kids! (or us with the kids)

Anything SB related this post? - nope - just regular family stuff.

It's nice.

Favorites

Thought I'd show off 2 of my new favorite pictures.

OK so in one he's naked (practically) but I love these pics! And he isn't showing off anything! Though he might not appreciate this picture when he's a teenager.
On one of my groups there was discussion about showing off your childs Spina Bifida. Adults who recount their parents showing their scars off to strangers. While I hope I don't do that when Nickolas is older - I must admit I do it now - but his scar is looking so good!
I think it's important to realize that these kids may not want their nitty-gritties exposed to the world, in say, a blog. As an infant, I think it is fine, I hope I'm not sharing too much, just normal mundane stuff to keep people informed and show off what Nickolas can do. And as he gets older, who know's what I'll do. I also write for myself, about me and my family, both Katheryn and Nickolas. I started the blog when we found out about Nickolas, but I don't want our whole lives to revolve around SB. It is a part of our lives, but at the moment a small part.
So in talking to strangers and others about spina bifida, I don't look at it as something to hide, I am proud to have a son with spina bifida. I welcome the experience to say, this is what spina bifida looks like. I'm currently trying to work out how to explain it to children, when my cousins kids were down but they did notice his shunt, but they didn't ask me about it.

YUM!!!

If this picture doesn't say YUM! I'm not sure what would.

Yes we finally tackled the solids! I said in another post how I was a bit nervous, worrying about the Chiari and choking/gagging as well as starting bowel issues. But things went great! OK it's been one day... but I'm so excited! I was going to wait until 6 months, but we started 2 days early.

He absolutely loved the food! I started him on oatmeal (it was suggested on the SB Kids board NOT to start with rice because it could constipate him. Good thing I checked, because that was one of the cereals I bought. He couldn't get enough of the cereal! I started him with 1 tablespoon, and gave him half, to start off slow. Today he inhaled the whole tablespoon AND then wanted more. He got so excited when he saw the bowel and spoon!

But at 20 lbs did we have any doubt he would like food? - not so much!

I'm also breastfeeding too, and feeding him first so he's not hungry and angry when we start. So far so good.

Nickolas has also discovered the art of the 'raspberry' and enjoys sticking his tongue out at everyone and blowing bubbles. Can I say again what a happy baby he is!

Thank you to a great grandma!

Thank you to my grandma and my kids great grandma!

My grandmother passed away May 2. Olive Phillips, she lived a very full and loving 86 years. She loved her family and she loved her great-grandkids (she has 7). Nickolas is her youngest great grandchild. 

She didn't always remember that Nickolas had spina bifida but she was a proud supporter of everything he did. When I talked to her about the Spina Bifida Walk - the Spirit Wheel Walk Run, she was the first person to pull out her wallet and donate. When I talked to her about banking Nickolas' cord blood, she gave us the money so we could do that, and hopefully have a use for it in the future.

Nickoals is a big baby, and he is hard to carry around. But grandma would hold him, and they would sit in the chair and stare at each other. That is how I will remember grandma. I thought I had a more recent picture, but this is grandma when Nickolas was 2 weeks old.