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!

Saturday, February 27, 2010

This week with Katheryn and Nickolas...

There isn't that much to say this week.
The kids have been sick (thanks Kyle) but somehow I was spared the cough and cold. Nickolas has been feeding every 2 hours while he's been sick, and 4-6 hours at night (we had been 3-4 during the day and 12 [yay!] at night). But he getting better. The poor guy would cough and cough and then throw up, so I wouldn't 'fill' him that much.
Of course this makes me exhausted! AND I'm trying to get my MRP [research project for my masters] done so I can graduate in June. Hopefully next week will be better - prob not - I look at the calender for next week and it's pretty full...
 

We got the pictures of our Canadian Baby Photographers Photoshoot - so cute!!! (http://www.canadianbaby.com/) I love them - they are expensive but we were an easy sell, when the guy came to the house we had Katheryn's photos when they did her pictures all over! It is great , they come right to the house, set everything up, and you get a free 5x7 even if you don't buy anything. Of course we always buy something. They have been in business for a long time - my parents have my baby pictures above their bed, from the same people. - OK free advertising over.


Of course we have been watching the Olympics non-stop. Pretty much we put on CTV in the morning and leave it on until we go to bed. I don't remember getting this into the Olympics before (except of course for hockey) but we've been watching ALL the sports!
I also want to watch some of the paraolympics next month - get a glimpse of things that Nickolas can do. Get out of the can't-do mindset. Geez I hope I don't have can't-do mindset. All I really know about is wheelchair basketball and sledge hockey, oh and murderball (wheelchair rugby?) But there must be lots of other things he could do (if he wanted). We've already decided Katheryn will be a hockey player.

Katheryn's new favorite things are to pull Nickolas in his rocking chair (which can't be easy because he is 17 lbs!), but also to feed him. I caught her shoving a goldfish (cracker) in his mouth, and when he wouldn't take it, she was shoving it in!

Last thing. I just found out about something called conductive education. It was through a post at the BabyCenter Spinabifida Kids group - I hadn't joined it before, but it has alot of the same moms as the spinabifida support forum. Anyways, two of the moms posted about their kids being involved in a conductive education center. They were on the news here is the link: http://www.wzzm13.com/video/default.aspx?bctid=68575678001 I looked into it and the March of Dimes in Toronto has a program. I have NO idea what it will cost (the Center in Michigan the news report is about has a 4 week program that costs $1200). But I thought it would be interesting to check out. And if it helps great! I'll talk to the SB clinic about it. They should have some more info.
 

OK apparently I had alot to say about this week...
Oh Yeah GO CANADA!!! The women athletes have been amazing! Now it's Men's Hockey going for Gold!!

Saturday, February 20, 2010

Pharmacy Rant

Fyi this is a bit of a rant but it is something that pisses me off. Enough that at 2am I am awake and writing this! (I am awake because the kids are sick and Katheryn needs extra tlc, but I can't go back to sleep).

Nickolas is on a prophalaxis (just in case) antibiotic - trimethoprim - because we cath him and don't want an infection. This is a medication he will be on indefinitely, as long as we continue to cath him. When we first got it, at Sick kids we were told they only make up 30 days at a time, keep it at room temperature or it isn't stable. Gotcha.
We transferred the prescription to our local pharmacy. The next month it said to keep in the fridge for up to 90 days. We didn't we were only using it for 30. The third month it was the same, it was kept in the fridge until we picked it up. Then I also needed to ask for a dropper so I could give it. The last dropper wasn't long enough for the bottle.
The prescription changed to a 1.5mL dosage and the prescription was written for 3x 90 days. No they could not give me only 30 days worth because that was not how the prescription was written. OK. Kyle picked up the prescription and I was surprised it came in a large bottle. Oh well, stuck it in the fridge. Went to give it to Nickolas a few hours later and noticed the sticker saying "do not refrigerate". Pulled out the other bottle saying "refrigerate for up to 90 days". ?!
So I called the pharmacy, talked to 2 different people before one could answer my question. Like when you say you want to talk to a pharmacist they screen to see if it is really a pharmacist question! Finally yes it can be kept at room temperature for 30 days but then becomes unstable. So a 90 day dose keep refrigerated.
So if I blindly followed the stickers Nickolas would have been taking garbage for 2 months until he got the next 90 day supply! Isn't this what pharmacists do?! Provide medication (that works) to people!!

I don't know who puts the stickers on at that pharmacy! I've gotten birth control pills that have the "may cause drowsiness" and "do not take with alcohol" stickers (instead of "no smoking"). But that was birth control pills and wasn't a big deal. This kind of is. This is medication for my 3 month old.

To top it all off, when I finally went to give it to him, I realized they didn't give me a dropper - or something to give the medication with! And I didn't have a 1.5mL dropper. What I had at home only had a 1mL mark - was I supposed to guess?!
Really! Shouldn't they provide the medication AND a way to administer it? I won't even get into the fact that one of the droppers I got in Dec wouldn't reach the bottom of the bottle!

So there is my rant. I feel a bit better. I am going in tomorrow morning to get a dropper or syringe or SOMETHING to give Nickolas his medication.
I might also test out another pharmacy. Can I give out practice scenarios to local pharmacies? Put them on probation?

Tuesday, February 16, 2010

Perspective

I was watching the Olympics yesterday – like everyone else and saw an interview with Alex Bilodeau, who won the gold medal for men’s freestyle moguls. He says that his brother, born with cerebral palsy was his inspiration. That his brother put everything into perspective. It made me tear up.

Sometimes I worry about the impact Nickolas’ spina bifida will have on Katheryn’s life. But then it got me thinking, the spina bifida isn’t holding us (any of us) back, it’s pushing us forward.

Spirit Wheel Walk Run

For anyone who doesn’t know I am organizing a fundraising walk for the spina bifida and hydrocephalus association of Ontario (SBHAO). I am going to post updates on the Left side of my blog. It is called a Spirit Wheel Walk Run and will be a walk along the Pickering Lakeshore. Participants will raise pledges and then participate with me in the walk.

We didn’t know anything about spina bifida (or minimal) a year ago and I am excited to help to raise money to the organization that has provided me with such helpful information and helps to put a face to spina bifida.

If you want more information you should be able to click on the picture and it will take you to the SBHAO site.

Monday, February 15, 2010

3 months already!


I can’t believe he’s already 3 months already! And growing well! Already 16 lbs 10 oz (with diaper) but still! One sign that he’s growing up... we’ve put him in his own room now. No more rooming in, in the bassinet.

He’s also been sleeping on his back! This weekend Kyle said ‘lets just put him on his back to sleep and see how he does’. I was sceptical – it hadn’t worked other times I tried it. Well 11 hours later he was still sleeping!

So now we have both our kids in their upgraded beds! Katheryn has been in her big girl bed for a couple weeks. So she can climb in and out as she wants (like in the middle of the night, or 6am). She really likes it.

Katheryn has also become a water child. We always knew she liked her baths (we have to spell it out B-A-T-H) when we are talking about it, and the occasional romp in the dogs water dish. But we’ve now discovered she loves washing dishes! Yes we have our own dishwasher! We discovered this at grandma and grandpa Ridding’s house. Katheryn helped make cupcakes for Valentine’s Day, and then washed the dishes (and the floor).

Saturday, February 13, 2010

Clinic Day!

We had our first day at the clinic today. It went pretty well. It was only a half day and we met with physio as well as a nurse and social work. Physio was very impressed with how he moved. She said it is hard to figure out what babies can and can’t feel or move, because they might just not feel like moving that part today. To assess feeling she had to pinch and see if he reacted. He did react with the soles of his feet (a bit diminished, but there). Yay! She said that the nerves travel down the front of the leg and then up the back, so his reaction to the back of his thighs wasn’t really there. We did talk a little about braces (AFO’s – the little ones) and a standing frame. But she said having a big sister (and cousin) is a bonus, because he will want to move around.

I really wanted them to say – wow he won’t need anything! He’ll be able to walk, run, whatever – it’s a miracle! Of course they didn’t say that, and it’s not realistic to think that they will say that. But he is a miracle; imagine if he’d been born 50 years ago? Imagine if I listed to that stupid doctor who said he’d be a paraplegic! He is here, he is ours, and he is doing so well!


Nickolas got to be a torch bearer on opening Olympics day! We visited work after the clinic and Heather, one of the unit clerks was a torch bearer and let me take a picture of Nickolas with her torch.


Go Team Canada!

Tuesday, February 9, 2010

PANTS!!



Who knew being able to put Nickolas in pants would be a milestone?
We saw plastics yestarday and got the all clear - yes he is healed and he can wear pants and it shouldn't bother him. Even though the dressing has been off for over a month and he has been healed I've been hesitant putting him in pants that will bother his scar. But they said not to worry he can wear whatever he wants!
So here he is ... in PANTS! (yes I might be a little tooo excited about this).

Monday, February 8, 2010

Shunt scare

We had a bit of a shunt scare today. Nickolas was very irritable and didn't stop crying for 2 hours! When do we start worrying about a shunt failure? I couldn't check his fontanelle (the soft spot on his head) because he's crying, and so its not soft. No sunsetting of the eyes (the irises of the eyes are sunken like the sun of a sunset). No vomiting (projectile or otherwise). Head circumfrance - 41cm - looked it up and plotted it on my chart - perfect. OK so I think this is NORMAL infant irritability. Finally another round of changing, cuddling, rocking got him calm enough to feed and he settled down.
Once I checked everything and was reasonally certain it wasn't a shunt thing he started to settle as well. I guess my nervousness rubbed off on him. We were told the rate of shunt failure/infection/break was 50% in the first year, and less after that.

Friday, February 5, 2010

Nothing Much...


Not much news to say. We are definitely in some kind of routine. And Nickolas is sleep well at night. We have an early bedtime, not like Katheryn miss night-time! He's usually asleep by 8:30, sometimes I put him down (on his belly - I think his incision still bothers him if he's on his back too long) he lets out this squeal! I'm not ready yet!! So we cuddle or I feed him a bit more and he's good.

We had a visit from infant development, this is a government public health feature. We had a good first visit and I'm excited that she seems very helpful. It is family centered so we get to make our own goals and go from there. She also had alot of information about resources and everything we are eligible because of his diagnosis (I hate saying disability).
We also had a good rapport, which is important. I'm hoping to get activities and stuff to do with Nickolas so that we make sure he is on track developmentally - or know where he is and what improvements he is making. Another person to help me know what I'm supposed to be doing. You'd think as a nurse and a second time mom I'd feel more confident. But not really. I'm afraid of missing something!

Katheryn is eating like a horse!!! Finally got her appetite back after the Norwalk flu we had a couple of weeks ago. I'm running out of different foods that she will eat. But try to give her vegetables or something new and she won't even touch it (So how do we know she likes it or not).

Tonight is Shannen's bachelorette party and we are going to a bar. This is the first time I've left the 2 of them for an extended period of time. I'll feed him and then should be home for 2am or so (so really only 6 hours). But it's also my first night of freedom in a while!