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!

Thursday, April 28, 2011

That feeling...

I have that feeling. That feeling that all is well and good in the world.

I think it is a combination of the beautiful weather I sometimes can catch between the rain clouds. That Nick is on track and doing some work and we are seeing progress, Katheryn is blooming into a big girl, and I haven't been too crazy busy. Oh and we've been essentially illness-free for the last month or so!

But here it is.

The belief that everything is right in the world and that we are right where we are supposed to be.

Too often sometimes I write about things that are bothering me, as an outlet for the negatives of spina bifida (or just life in general). But here I am, here we are. In a really good place.
I don't really know what has changed, probably nothing. Yes we still has the issues we will always have (constipation, worry about the future, fitting PT in daily life, fights with insurance companies, sleeping, eating, cooking, ect).

I've also been working on my Spirit Wheel Walk Run and have been spreading information about spina bifida and showing off my beautiful kid! I've actually had a couple people say - he doesn't look like he has spina bifida. EXACTLY!
It gives me a great feeling.

But today, right now and for the foreseeable future - we are perfect, we are happy, we are here.

(and fyi - that is a sunburn that Nick has on his face - bad mommy didn't even realize the sun can burn in April! I had one too)

Sunday, April 24, 2011

Hoppy Easter!

 We enjoyed our Easter weekend with some bunny sightings and egg collection. And of course lots of family and more family time!
It was great!

Sunday, April 17, 2011

Just monkeying around!

True to form, Nickolas decided to show off while Mommy was busy at work this week.

Video, I am sure, will come. But Nick said his first word!


Very clear. So clear, I was out of the room, and I thought it was Katheryn who had said it!
Also true to form, Nick has been very stubborn that he refuses to say it again on command. (I should know better than command a Ridding to do anything!).

Nick has also started to pick up some baby sign language. Something we've only been working on for a couple of weeks. Kyle and I are not very good at doing it. But hope to work more on it through the next month or so.
We didn't push it when he was younger because he wasn't that interested in using his finger or hands. But working on OT cleared all of that. So I thought it was time to try to see what we can all do together.

Look at the pictures, I just noticed that we keep putting things on his head - and then he keeps trying to take it off! But it looks so cute!!

We'll just rock out in the meantime...

Coming soon - information about our yearly Spirit Wheel Walk Run for spina bifida.
June 18 - everyone is welcome!

Friday, April 8, 2011

Physio, physio, physio - Back to Basics

I have a feeling I’m going to have a lot to say about this in the coming weeks.

We’ve been looking at our options after being ‘dumped’ by Grandview. Yes I know that is not what actually happened. But that is how it feels, so I’m going with it.

We met with Katie, our infant development worker (who we LOVE) and she brought us information on private physio. Today we went to mom and baby group at the SB clinic at Bloorview. We have assessment by the RN/PT/OT/SLT/SW (I think those are all the letters) for an hour, then parents leave for our own private education and group. We end up socializing and talking amongst ourselves for about half the time and squeezing in some education at the end. It’s almost as if we need another hour to socialize and get to know each other. (Actually we talked today about meeting at noon for lunch and socializing before group).

At group today I had the opportunity to talk to the physio at Bloorview. We talked a little about what he was doing (because he really refused to show off anything). We talked about what went on with Grandview, and how I feel we really need to get more physio.

I left kinda feeling like we have been totally on the wrong track for the last couple of months. And I’m not sure how we got off track. OK that’s not true. I do know where we got off track. We tried to skip some steps.

So I have some goals, some plans to follow up on. We are going to work A LOT at home. A LOT more than we have been doing. Thank you Gretchen for helping me realize that we will be doing the actual doing of physio (commenting on my post when we got 'dumped'). So a break doesn’t actually mean no physio, it just means more effort on our part. As long as we have some guidance of what to do and not to do.

So our plan. Standing frame, standing frame, standing frame (I guess I just feel like repeating myself a lot today). Work on lie to sit. Consistently. As well as hands and knees, and kneeling. All of these I know Nick can do. It’s just getting him to do it more often. Also more ball work (core, core, core).

These are basic. And they’ll lead to the next steps. Stronger legs, stronger core, more confidence. So that when he’s standing at the couch, he’ll be stronger and more ready to take those steps. Because then he will have some basics behind him.
I think before we were concentrating more on the standing (which is great), but not enough on making sure he had the skills to back it up.

It reminds me a little about learning how to play piano. I took piano lessons when I was younger. I enjoyed it, mostly. But what I really wanted to do was play my Les Miserable and Phantom of the Opera. So once I took a couple of years of lessons, played lots of very basic stuff and learned how to read music. I could read the music, and could play some of the music and stopped lessons. I can play sorta well with my right hand, and only 1 or 2 songs with my left hand. I can do a couple of the songs but that is it. I am not a very good piano player. Pretty much, because I skipped a bunch of steps. The basics.

Thursday, April 7, 2011

Birthday Girl!

The day finally arrived. We had been talking to Katheryn for a while that it was going to be her birthday. And there were going to be presents, and we were going to go to the zoo and she was going to be 3!!!!
So we strated the day off with our special t-shirt. This Little Monkey is Three! and then we got to open some presents. Katheryn gave all the presents out (like at Christmas time), but we had to tell her that, no all the presents were hers.

 Katheryn was so funny. Every single present she opened she did the same thing. It was "ooooh, look!" and then she wanted to wear/play/watch whatever it was.
We had to stop opening presents for a while after Katheryn opened up a Dora DVD and we watched it.
But she was definately more into the presents than she has been any other year.

Then it was off to the zoo to see polar bears! We go to the zoo every year on her birthday. Last year we wore just our t-shirts (and pants ect). But this year when we went we had to be appropriately dressed for April weather. Notice the winter coat and red cheeks! (We were also in winter hats and gloves)

Katheryn was too excited to wait for the actual polar bears - she was hugging the sign!

Polar Bears!!! 

OK, now we can see some more animals. But first some very  important puddle splashing with Madi.

And another favorite - Turtles!!! Always a hit, especially when they are so, so close.

And Nick enjoyed watching the fish swim around in the aquarium.

We took a break for some birthday cupcakes and singing. Katheryn as usual really hated the cake part. I can add this to the other 2 pictures of Katheryn crying in front of the birthday cake (I know mean, mean mommy). But it's a tradition, just like the zoo!

Katheryn was really happy just eating some nacho chips.

That's ok,  it leaves more for this guy!

What?! Do I have something on my chin?

That's right, it's my birthday. I am a big girl now!!!
Here is a video of how Katheryn reacts when we sing happy birthday to her.

Friday, April 1, 2011

Physiotherapy Woes

A core therapy in our daily life. A key member of our health care team.
Exercises and working with the goal to reach Nickolas' full potential.

And one of the things that makes me doubt and worry. Are we doing enough, can we do more, are we doing it right? (These are not new Questions). THIS is the thing that is supposed to help getting Nick mobile, getting him independent. THIS is the person who is supposed to work with us and help us reach these goals.

THIS is the person who made me so excited 2 weeks ago when she mentioned the 'w' word and helped us with exercises and activities once Nick started standing. Was it really only 6 weeks ago?
We still have more to work on. It is more than just standing, and trying to get him to cruise. Getting him stronger on his feet and more aware of how to move his legs. Strategies to help him.

 Nick hasn't sat himself up  until Tuesday, and we've been working on it for months and months and months. We still have kneeling and 4 point on the goals list. Getting more core strength. And there are probably other things on this list of things for us to work with physio that I can't even think of. Nick is juggling lots of different balls to reach his goals. Instead of just concentrating on one thing!

For example, I don't know if some of the games I play with him are actually helping or just play. When I'm changing Nick and cathing him. I get him to try to kick my hands when I hold them above him. So that he is bending his legs at the knee and not the hip and controlling his foot. Is this just a game? Nick likes it so yes. Is it helping? I have no idea? Is it hurting? No. Is there anything better I can do that would help more? I am out of bright ideas.

So not that we've established the importance of physiotherapy, we get to our woes.
Our physio block, that we had just started 6 weeks ago (and missed 2 weeks because of sickness) is done. Not only is it done, but when someone will call us 'in May or June' we will have a new physiotherapist. Because caseloads are being shuffled. So now Nick will get another new face he has to get used to. And we had just started getting some work out of him without crying!

I felt like we were just getting started, getting comfortable and then had the carpet pulled out from under us!
So now I'm looking at private physiotherapists. Because waiting until 'May or June' is just not acceptable. Nick is 16 months old (well, actually 16 1/2 months). He has had 5 PT sessions since he was a year. That is just 5 session since he got his standing frame, since he got his AFO's. 4 sessions since he started to stand on his own.
This is the therapy that is supposed to help his mobility, help him reach his potential. And here we've been doing (what feels like) nothing for the last 4 months! Either waiting for physio to start, or waiting for him to feel better, or finally getting to physio, just getting started, just starting a plan and it's over. For another 2 months!

In May he will be 18 months. So that is 5 PT sessions in 6 months!
There is NO WAY I'm letting that happen!

You tell them Nick!