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, May 20, 2014

Surgery Date

After two weeks (felt like forever) of waiting for a date I got the call. For the MACE surgery

We had wanted August. Nick has 3 weeks of camp in July that I didn't want to have to cancel, and then the cottage for our family reunion for the long weekend, and I have vacation time in August...
So August was when we were hoping.

I called the Nurse Practitioner as soon as I got home May 2nd (after hours of course), then called again on the Monday and talked with her. She said they were booking into the summer but someone else would have to call me back with the date.
I had a little bit of a freak out.

Fall means missing school, and at least another 4-6 months. I'm not sure I can do this for another 4-6 months. Accidents and inconsistency, not coming any closer to underwear. 60-90 minutes every night or evening and then still having issues the next day. And the waiting, knowing we were just waiting to start something that make take a while to work.

We made the decision and now I just wanted to do it!
Get it done and on the road to the tough recovery.

Last week I got the call.

July 28th

My first thought was that we couldn't do it. It was too early (yeah that thought actually went through my head... after worrying about it being in November).
But no. July 28th is good. It is great!

Number one is that it is a special day by itself. Nick's grandpa's birthday, and keeps them connected.
But it is also immediately after camp is done, with a good 6 weeks of recovery before school. It will cut Nick's summer in half, but the first half is full of fun.

Now it is just getting the time off of work to be with him.
As soon as I found it I contacted everyone to see what my options are. Taking a leave of absence for 10 days is my plan. Let's me be with Nick in the hospital, and extra time in case of complications (I haven't heard of anyone who had the MACE without some kind of complication, so I'm expecting something). And time at home for recovery as well.

So July 28th is the day.
68 days away.

We've talked to Nick about it.
He has been asking when we will put the catheter into his belly button.
We've talked about an operation and going to sleep.
Not sure what else I can do to prepare Nickolas. But we have 68 days to figure it out.

Sunday, May 11, 2014

'Lil Bikers

We pulled out the bikes this weekend to try them out at Grandma Ridding's house (Katheryn got a new bike now that her collar bone is healed).
First we practiced in the backyard until they were ready for the street.
Pretty soon we were ready to get moving!

This is the bike that we got for Nick last year. We didn't use it as much as we wanted to, it was still a bit big this year but it fits him a lot better now.
It has a couple of features like a seat with a back, seat belt, pedals with foot support and Velcro, and direct-drive so it is easier to push. No parent handle, so we just push him using the seat and of course training wheels. They are a bit thicker than Katheryn's training wheels.

The kids had a great time, I was pushing Nick around, Katheryn was off doing her own riding around in a circle (no cars).
Then we decided to see what Nick could do himself, without us pushing!
He was pedaling on his own, starting... and if you watch the video... but needing some help to stop.

And Katheryn was getting used to her bigger bike too!

They had so much fun! It was a great Mother's Day gift to see them enjoying their bikes so much!
By the way, in the video you can see all of the branches and tree limbs left over from the December ice storm.

Monday, May 5, 2014

Appointments Galore!

May is our month for doctors appointments.

For 1 month we have 2 SB clinic days, MRI, pediatrician check-up, 2 dentist appointments, neurosurgeon follow-up (which I had to move to June), 1 resources for exception children visit and 1 camp consultation.

First was SB clinic day.

It went well after a bit of a schedule-confusion.

My appointment letter said 0830, but the confirmation phone call said 1030, so we aimed in the middle for 930. We went straight into a room, and stayed there for 6 hours!
My father came with me, which was good because we didn't actually have time for lunch. We were told, 'just one more person' or 'I can come back' but from experience... you grab them while you can.
So my dad went and brought food back to us.

I had one focus. Get the MACE scheduled. But also see and talk to everyone else.

But we also followed up with everyone. Social work to see if there is anything to help us (and introduce herself as our original social worker has left). Psychologist to follow up with our plans from last year and my concerns about Nick's learning. Occupational Therapist to discuss how Nick is doing with school and his wheelchair. Physiotherapy to talk about his walking and mobility.
Nick showed off by letting go of the table and standing there for about 10 seconds... over and over again. The label L3 came out again with discussion about functional muscles. Which I listened to and put aside until I can think more about it.
Dr Church came in and we discussed how everything is. As Nick's developmental pediatrician she is part of everything. I really like and respect her, and the feeling is mutual, she respects my decisions and observations. Nick loves her too. We talked about bowels and bladder and the upcoming MRI to look at tethered cord (which I have successfully pushed to the back of the my mind for the last couple of months).

At the end of the day we saw urology. Discussed the MACE, I already had read or learned what he explained, all of the information was consistent with what I knew. I signed all of the papers and we had a plan (MACE operatively, but if for some reason it was not possible then the c-tube as a back-up). Now it is just waiting for the date.
Nick was actually very interested in what was being said and when we got home that night asked when the catheter was going to go into his belly button.
We also got a prescription for a new type of oxybutynin. A gel instead of the patch. We've had issues with the patch coming off early, and he had a new red and irritated mark from his last patch (that just got worse through the day). So we'll try this new gel.

We left clinic with a ton of information, a plan for surgery, and a car full of tired people, with a drive through rush hour traffic. No clinic again for 1 year, but as usual Dr Church can be contacted earlier with any questions or concerns.

2 days later we were at Sick Kids for Nick's MRI. Sunday morning at 8am. Yuck!
8am meant a very early start.... but no line up or bumping.

Katheryn liked Nick's ninja look.

It worked out really well. I knew the nurse he had, he went to sleep really well and wasn't scared. He woke up drunk and not unhappy. He was fine for the drive home (except for us getting a bit lost - not my fault), and tired for the day.
Now that that is out of the way we have lots of other appointments through the month, and follow up with Dr Rutka in June to see what the MRI says.

One thing I have noticed over the years with Nick's appointments, we seem to have months and months with no appointments and then they all bunch up like this for a month. It makes for a really busy month, but then you know you'll get a break soon.