Mom and Baby Group!

So we went to our first mom and baby group at the spina bifida clinic at Kids Rehab. It took us about an hour to get there, an hour and a half (rush-hour) to get back. But I'll definitely go again.

There were 5 other moms there, 2 others with infants and 3 moms with toddlers. It was great to go out and be with other moms and kids with the same problems we have been facing (and will face).
The first hour was with physio, occupational therapy, nurses, volunteer and social work. It was a bit of a free for all with playing and seeing how the kids have been doing. One of the kids, 2 years old, was completely paralyzed from the waist down, and it was just amazing seeing him move around and play. He was such a happy boy. It’s wonderful the resiliency these kids have.
For the second half all the moms left to have our own meet and greet. The online forums and everything are great, but I really do like the face to face as well. When the hour was over I wish we could have stayed longer. The next clinic isn’t for another month.

I would be holding Nick and he would just be staring up at me. He did like playing with another little girl his age. Just staring - his first girlfriend. He really is a face-man. You give him a toy and he doesn’t care. You stare at him and he loves it!

Physio also gave me some more things to do with Nickolas. We are working more on tummy time. When I put him on his tummy he doesn’t like it, so I’m working more on that. He can lift his head, but he doesn’t like to. Nick can move his feet but I don’t think he feels all that much. If I hold him up with his feet on the ground he doesn’t really push against them. Sometimes he does, but I don’t think he feels it. So we are trying to teach him what his feet are, and getting him to play with his feet.

I need to take a video of Nickolas in the morning. He wakes up and talks and talks to him mobile, he also talks to the lion on the wall above his crib. About half an hour in the morning I can get out of him. This allows me to get Katheryn ready in the morning. She doesn’t like getting changed at the moment. Screaming when I take her pj's off. But once they are off and she's getting dressed ... sweet and smiling!

Did I mention Katheryn’s new favourite word - MINE!

Olympics!

The olympics are over - I've had alot of fun watching them. And of course dressing up the kids to help cheer. Watching the gold men's hockey game (dear to my heart) we had to scale down our cheering because we finally had the kids napping. In fact, Kyle couldn't move at all for the final winning-overtime goal!

But we did get some cheering in before hand.

I also enjoyed information about the upcoming paralympics. It was interesting to see all the different sports. And to see how CRAZY the athletes are! Downhill skiing! Do I think they are crazy because they are people who are disabled? No way! I think its crazy what these athletes put their bodies through.

Some other non-olympic postings - Katheryn's favorite word - mine. Everything is mine, mine, mine! and Nickolas' newest acheivement - Laughing! Yay! My favorite sound ever!! Listening to Katheryn (and now Nickolas laugh). What was he laughing at? His jungle mobile. In the morning now he wakes up and just lays in his crib looking at his mobile and talking and talking and some little giggles.

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!!

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?

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.