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!

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).

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.

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!

Happy Boy

I love the smiles!

We had a little photoshoot at home. Trying to get at least half as many pictures as I had of Katheryn by this time.
Nickolas is so big he almost looks the same size as she does! Katheryn loves holding him, she gets on the couch and lies down and pats her chest, like saying "OK I'm ready, put him here". We do let her hold him (standing very close). She just loves playing with him, and giving him her toys, or his toys.
The downside, she likes playing with him too much. He doesn't get much sleep during the say because he'll just start to nap and she'll come up to him "NIII" and he'll jump and be awake.

The good part of that is that he's sleeping well at night. He'll give me 7-9 hours now. He's still in our room, he still sleeps on his stomach, I think his incision bothers him when he's on his back too much. (And its such a big incision that I don't want to push it). We have our angel mat (that is supposed to go off if he stops breathing) so that gives me a bit of comfort putting him to sleep on his stomach.

When Katheryn goes to daycare we walk over (when it's not minus a million!!!) and I put him in my wrap. He loves it, just with his head poking out and looking at everything.