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!

Monday, March 26, 2012

Picture Perfect

Recently another mother Jill seemed to read my mind. If you haven't already seen everyone sharing her post - please take a minute and read it here.

I wake up every morning knowing how lucky I am and how blessed I am to be where I am today. I know that sounds super mushy. And life isn't perfect, anything but some days. Its not supposed to be - how boring would that be?!


The purpose of my blog is to share the great things that are happening in our lives – and the lousy things too. It is to share my thoughts and it is also to become something greater, part of a larger community. When we first got the diagnosis that something was going to be different online sources helped me to realize what life would be like with spina bifida. Yes there are tough times, and happy times but mostly there are just living times.




It's like when you are having a conversation with an acquaintance about something, and then it comes out that you have a child that was born with spina bifida. This happened to me alot this past week when I was doing a breastfeeding workshop and sharing some of my experiences.
I very often have someone say "I'm sorry" or "I don't know if I could do that". No worries, don't be sorry, and you don't have to know you can do something. It just happens, you just do it.

I love writing, I write the blog and I have journals that I started the day I found out I was pregnant with Katheryn. I feel so creative when I'm writing, like I'm actually doing something. And I’ve always wanted to write a book. I enjoy reading other books and I knew I had the material to write something myself. So this month I decided to start.

Reliving and writing my thoughts of the diagnosis, the birth, those first few weeks. It reminds me how very far I have come and how I really wish I knew how happy our life is.


You know how sometimes the best pictures, your favorite pictures aren't the ones where everyone has their best 'cheese fries' face on. It is the grumpy faces, the funny faces, the unexpected true laughing pictures - those are the life pictures.

Well, that's life. Not those perfect moments when everything lines up just how you always wanted it. The best moments are those ones that you don't plan, you don't expect and just sneak up on you. And turn out to picture perfect.

Sunday, March 25, 2012

Standing on his own two feet

Nickolas is showing off some new skills.
We've been working on getting Nick to stand with us supporting above his knees (we started in January at his hips).
But now he decided to take it to a whole new level!

Nick started to crawl over to me when I'm sitting on the floor. Then he pulls himself up onto his feet and falls down. Then one day he let go, and just stood there for a couple of seconds!
He did this a couple of times before I realized what he was doing.

So this week I set up a video.
You have to watch the whole thing to get him standing by himself.

video

I think Nick has also learned the joy of dancing!

Wednesday, March 21, 2012

Walking the Walker Journey

We are on the walker journey again.
Nickolas has started to scream and cry when he's in his front one. That was walker #4. Every time I think it might be the right one, and he likes it at first, but then it stops meeting his needs and we move on.

We are moving on again.
It's time for four wheels. He needs something faster that moves when he moves.
So 2 weeks ago we tried something new at the end of physio (which he is doing so great! Exceeding goals!).
Walker races!


Poor Nick had very wobbley legs - but he still wanted to get that sticker!


So we had some ideas of what to do the next week.
Posterior walker, something that is deeper - so he can't rest his bum against the back. And 4 wheels.


We did it at the end of physio again, but his legs are stronger even from the week before!

video

Now the bad news.
We didn't have one that we could borrow.
We're going to try to problem solve again this coming week, but I don't know how we are going to decide to purchase one if we don't have the ability to bring it home and try it out.
But the plan is to put the order in for one before the end of this PT block.

Katheryn LOVES coming to physio with us at Grandview. She says that this is where all the fun toys are. Like for example when everyone is watching Nickolas climbing the stairs up and down, she is free to go and check out all the fun boxes!


This was our last session with Sheka :(
She has been with us consistently since we got picked up from Grandview. She is great! She loves coming to see us and have a quick little visit with Nickolas and see how he is doing. She's moving to another section in Grandview. But we will really miss her!

Tuesday, March 20, 2012

March break and catch up

I haven't written very much on my blog this month because we've been busy out and having fun. Or just relaxing and not doing anything, or not doing anything and having fun all at the same time!

There was some March break fun!


Our daycare provider Jennifer (who is EXCELLENT btw) had lots of fun planned for the kids. Including a visit to the fire department.


Nickolas seemed a little unsure, but Katheryn just talked, talked, talked about the trip. The importance of a fire safety plan and spent days making the fire engine noise! wee-oh wee-oh wee-oh



And lots of trips to the park.
Because it was March Break Nickolas was able to go in outings in his wheelchair. I thought it was a great opportunity for him to get more used to wheeling himself around.
I asked Jennifer if he was moving himself. She told me no, when they went to the park he would get a serious look on his face, point at the ground and say 'down'.
OK Mr Grumpy-pants!


The weather in Ontario has been FANTASTIC! Record breaking, pull out the shorts fantastic!
Lets have some smooching in the grass, I love you, Fantastic!


Katheryn and Nickolas have discovered the joys of having a dark coloured van.
Katheryn has drawn all 4 of us on one side and Nick on his door. And Nick likes getting in on the action too.


And for a sample of our days together...

I had a couple of days off this week and had all kinds of crafts and drawing and fun planned for us to play together. But the point was that we were doing things together. And who cares about the dirty dishes, or clothes or anything. Lets just play!



Wondering what a typical day is like? It goes something like this...
Cow, horse? Who knows.

video

Hope we weren't too boring for you!

Thursday, March 8, 2012

Average

Who ever thought I'd be happy with average.
But I am! I'm ecstatic about average!

We had our reassessment for speech therapy this week.
Nickolas blew Sabrina away.
She was able to do some testing with pictures and stuff to score where he falls. This wasn't even an option last time when Nick wasn't saying anything.
Nickolas falls above average for his age in comprehension. And exactly average for his age in expression.
So we don't qualify for speech therapy this session and we reassess in August.


We have fine tuning to do - but we already did all that learning with Katheryn (who gets reassessed by Sabrina next month).

I can't believe how far Nickolas has come. From November when he was still only saying 5 or 6 words to now he was over 100 words easy. And sentences, multiple word sentences. That you can understand!

I'm a little disappointed that we can't work on pronunciation right now. But at the same time, that frees up some time every week that we already have physiotherapy, and conductive education starting next month. So one less therapy isn't necessarily a bad thing.

Now we just have to figure out where Katheryn is.

Thursday, March 1, 2012

Show Off!

That's what I have.
I actually have 2 of them!


Katheryn races, Everywhere. Up the stairs, down the stairs, to the car, just because. She is getting alot better when other people win. Or tie.
She is a super hero (she has super strength - she can open the fridge) and she is a super-finder - her super power.
Did I mention she has an active imagination?
Katheryn has recently been working on numbers, simple math and colour mixing.
And aceing it! Every day we practice.


They love each other so much! Sometimes I can't believe what a relationship the 2 of them have with each other.


Katheryn comes with us to physio and we talk that we are there to help Nickolas and she shouldn't get into trouble. (Doesn't mean she doesn't push the boundaries though).


But usually Katheryn finds the cool toys for Nick to play with!


 We've gotten picked up at Grandview again.
So that is 6 weeks of therapy before the next break (but we start conductive education again in April)


Nick is really showing off now!
Last week was our first session where we did not have any tears - at all!
We even had Nick laughing! Unheard of!

video

We are working on standing. With less and less support.
He has more ability than he thinks that he does. Nick is very cautious. And always has been.
But Nick is learning his ability and has been showing himself off!


Cruising. He hates cruising. If something is out of his reach and it's beside him, thats fine, he's good without it.
This week we sat up to work on cruising. He just dug his hands in, and off he went. No problem - like he's been doing it for months!



He showed off the same way this week when OT was with us. Everything she put in front of him. Done and done!
Drawing lines - no problem
Stacking blocks - give me more!
Opening things - fun!
Scissors - not something we work alot at home, he needed help but that is age appropriate. And Nick thought it was fun! So did Katheryn!

So we are all happy to have a house full of show offs this week!