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, March 29, 2011

Good morning Mom!

Look what I decided to do today!

Thursday, March 24, 2011

More Sick Days

Just when I think that we are on a streak of good health...
Nick decides to throw me a for a loop.


He caught the stomach flu. So my baby that never, ever throws up decided to freak mommy out by throwing up all day.
And yes, shunt watch came into effect the moment he started to throw up. Out came the measuring tape, fontanel soft (I am so glad that hasn't closed over yet), eyes fine, lethargy/irritability nothing unexpected with the flu.

Routine, medicines and any type of physio or work went out the window. Any appointments or reasons to leave the house were cancelled or ignored. Katheryn ran wild and couldn't figure out why I didn't want her playing or touching her baby brother. I carried around alcohol wash so that I could disinfect anything that had vomit on it.


Nickolas is not a juice drinker. He hates water or anything that is not milk. And giving any type of milk product to a child that is vomiting. Not a great idea. But I knew I had to keep him hydrated. I tried different juices, different mixtures, apple sauce. Anything! And I was still keeping shunt in the back of my mind.
Whoever would have thought that the stomach flu would be on the top of a wish list!

 The next day Nick slept alot, didn't look very happy when he was awake. But kept what little food he felt like eating down. He didn't want to eat very much. Not even his banana! His most favorite food to eat!
Shunt worries continued, but head measurement and fontanel still checked out. And everything else.
Sometimes normal baby sickness happens. It's not like we live in a bubble!

Every time I thought about taking him somewhere, Doctor, urgent care clinic, Emerg, he perked up and we decided to wait. Because really I felt they would tell me it was a virus, keep him hydrated and he'll get over it. And I can do that without dressing everyone, dragging them out into doctors offices and waiting for hours to be seen.

OK, so no one wants to hear the run down of being sick. I'm sure you've been there. Katheryn caught it Saturday.
Nick took a couple of days (4) to really bounce back. By Saturday I got a smile, by Sunday he was 75% better. But then his output was starting to get lousy, because he was still refusing to drink. Friday I got him pedialite that he just barely tolerated. And he really hated me shoving a syringe in his mouth and making him drink that way.  I think he was hitting his minimum output, but that was it.
Now looking at his fontanel - was is sunken? Did he produce tears? Was his mouth dry?

And the round of worry started again. Gastro, dehydration, shunt, UTI, constipation, diarrhea (which you'd think I'd know which one it was). Every little thing sent me into another cycle of worry.


But I think we have finally turned the corner. I've allowed Nick to drink his milk only, because that means he'll drink. We will conquer the need for water another day.

But here's hoping that the spring weather will bring more days of health than sick. Because it has been a really long time for a long run of non-sickness!

Thursday, March 17, 2011

The W word

Our physio, Melissa, first used the W yesterday during another good PT session.
So what exactly is the ‘w’ word? Most people have guessed walk. Almost. We talked about when he will be ready for a walker. What steps we are doing to reach that goal. But we have that goal in sight!

Nick has done so much in the last month. Was it really only a month ago that he first stood up?! And now we are talking about walking!

I have had a timeline in my head. Our old PT once told me that he wouldn’t be ready until he was 3! That completely blew me away. What will he do to move around until then? He’ll just crawl or be carried? If that is the case, shouldn’t we look at alternative modes of transportation (yes – read wheelchair). But that is also going too far. What is in the middle.

I think she told me 3, so that I didn’t get my hopes up, and of course that was months ago, when he wasn’t weight bearing or anything! Try to balance reasonable expectations with possibilities. And lots of room to be surprised.

My timeline has never included the number 3. Wait until he's 3 - no way!!! Two, two years old was my goal to have a walker. But really I can have my goal, PT can have their goals. What really matters is what Nick's goals are.
I think Nick has a completely different goal in mind.

Nick has standing down pat. He pulls himself up from a seat (usually my lap because it is the right height) and he'll stand there for about 20 minutes.

We are starting on getting him moving. Baby steps.


First we shift weight back and forth.
Then we put all his favorite toys on one side or the other side, to get him to reach for them.
When he's reaching for them (and oblivious to everything else) we shift his weight to the opposite leg of where we want him to go, which takes his weight off the foot we want him to move. And we see what he will do.

This will get him cruising. After cruising we see what he will do when he's not up against the couch (just holding around his chest or hips), as if he is in his standing frame, but being held. And get him to realize that those things are the bottom of his legs are not just for holding socks!

A Green Day

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Saturday, March 12, 2011

Age Appropriate

Age appropriate, age appropriate, age appropriate!

I don’t think I’ll get sick of hearing those words!

Occupational Therapy declared that … yes, you got it… Nick was age appropriate!

We had an assessment during Nick’s latest physio appointment. Our last block of sessions included both PT and OT and the two of them work very well together. And they both love Nick! So Sheka (our OT) likes to pop in sometimes to see how we are doing during this next block.
Nick decided to show off for her!


 
Coloring


Puzzles


Taking things out, and then putting them back in the tiny holes



stacking blocks


turning pages


feeding himself


She'd ask him to do something, and he would just go ahead and do the next step!

She said we must have been practicing. Not so much, but Nick really likes doing what his sister is doing - and really LOVES showing off, and if she is colouring, or playing with lego, or doing puzzles - well then he is right there wanting to do it too!

But
Sometimes I wonder, sometimes thoughts get the best of me. Nick isn't all that mobile yet (army crawling only), and not saying any words. I think of Katheryn when she was 16 months old, and my niece when she was 16 months old. And Nick just seems so behind them!

But wait a sec. How is he behind them? Well, first of all he's not running around. Well yes, I can't base all of my fears on something he is not going to be age appropriate in. And so much about being, (AHHH) a toddler, is about, well... toddling. Exploring the environment, learning limits, doing things and learning.

And talking. Talking. Well, we are working on that. We are going to speech therapy group - where all the other kids are older and running around and saying a couple of words (I think). And I KNOW in my head that when Nick is doing so much in his motor skills that his speech will come. I know it in my heart that he understands and that one day he will just pop out those words "Mommy, daddy, doggy, Katheryn" - or however he short forms it, probably banana will be high on the list too. I just wish we were there now.


BUT this is about AGE APPROPRIATE!!!
And everything else will come. I know it, Nick is super smart, and happy and healthy. He has definite opinions about a bunch of things. Not the least of which - if he doesn't feel like doing it, we won't.
Stubborn, stubborn child!
But I'm sure that is age appropriate too!

Friday, March 11, 2011

Toot my own horn!

This last week made me realize how well I did with fundraising last year!

I received a letter saying that I was a top seller of our SB&H calenders - with 68 calenders sold! Now I did not sell all of these calenders, my family helped alot and Centennial College has been a big supporter of my fundraising - with my mother Gwenda Bartley being a driving force behind fundraising in her workplace!

If you have no idea what I'm talking about - here is where I posted about the yearly TGIF calenders that the Spina Bifida and Hydrocephalus Association of Ontario have been selling. All proceeds go to the association (which has helped me so much with information and support) and the calender sales made $50,000! Along with 2,500 calenders that help people to understand what spina bifida and hydrocephalus look like!
I am so proud to be a part of that!

I also received a new registration for this years Spirit Wheel Walk Run. I have a tab at the top about last years walk. This walk was the first time I'd organized something like that, and I was astounded by how much we personally raised ($2734) and how easy it was to do. Pretty much we got a group of people together and just walked somewhere. We had matching shirts and a banner and had a good time for a great cause. Of course I blogged about out day here

I really felt we were putting a face to spina bifida that day!
And I was written up in a local paper. This was also in a special edition of our SB&H magazine (where we were on the front page!) This covered the original article in the paper. It was followed up in the Winter 2011 issue. It covered alot of the stories of the walkers - but I'm tooting my own horn!
When we got our registration pamphlet for the 2011 SWWR - who's picture is in the pamphlet? That's right - our group picture!

There was never any doubt about participating this year. I'm already thinking of what date would be best. But it's really nice to see our pictures! I kinda feel famous!


Friday, March 4, 2011

|Accessible Parking

So today was the day. The day I decided to fill out the simple form for the parking permit. For the simple sticker that will go in my car window. But in truth it isn't very simple.

It was something that I always had in the back on my head, oh yeah one day we will apply. When we need it. I had thought in 5 or 6 years, you know it's for (lalalalala) wheelchair parking. Maybe we would never need it!

Then I started to learn more about it. It is for more than wheelchair parking, it isn't disability parking (like I had originally titled my blog - even though I didn't want to). It is accessible parking. A space that is closer and bigger to make things more accessible, easier.
It isn't supposed to be a token for a disability. It isn't supposed to be a sign saying someone in this car is different. But that is still something I am working over.

But I decided that today I needed help. Accessible parking would mean it would be easier to carry my 27lb (and only getting bigger - faster) child around. That there is that extra room for the stroller. And while I am still not sure if I will use it, or where, or when, I will have it. I will have it when all other toddlers are toddling with their parents into the store. I will have it when other children are tugging at their parents hands to run across the parking lot. I will have it when I am juggling my two kids and stroller (or full arms), because sometimes we do need things to be more accessible.

The application is still the first step. And I am still debating with myself about the need for it. But when I've talked to anyone else in the family (and friends) they are all glad I've applied and see the need for it.
I'm not quite sure if I'm happy that I've already stuck that letter in the mailbox...