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, September 8, 2015

Grade One and Two... First Day of School

The day arrived. The first day of school.
After getting all my thoughts and stresses out on 'paper' yesterday, and a good night sleep we were all ready for today!

Both the kids got up and were ready to go in the morning. The bags were packed, lunches were done, clothes picked out, new shoes all ready.

Katheryn was very specific about what she wanted for her hair style. And wanted me to take a picture so that she could show it off.

Katheryn was very excited to start school and see all of her friends. She couldn't wait to get on the bus and start grade 2!
She told me that I could take 3 pictures of her, but she only wanted to do one pose.

We weren't sure how the bus schedule will work with the kids. So Kyle and Katheryn went together to Katheryn's bus stop. He got  back to the house in time for Nick's bus, so there is enough time to get to both stops.

Nickolas is excited as well to start school. Not nervous a bit (or if he is, he isn't telling me). When Nick got up in the morning, he was happy that he was going to see his friends today. When I reminded him that he was going to his new school, he told "I know that, I am happy to  meet my new friends."

The bus driver called me yesterday to confirm pick-up time, and was there in time at our house. So there wasn't any delay in Nick going to school. Nick got in the bus and then was gone.

 I went into the school right after first recess to watch Nick's bathroom routine and offer any suggestions. Nick looked so happy there and everyone said he was doing well. I never got to see Katheryn (I didn't want to interrupt anyone too much).

When the kids came home. They said that they had a great time at school. Nick said he made lots of friends, and seems to be in class with all of Katheryn's friends. Katheryn is also in a split class of grade 2/3, which I am very happy about. I think she will do great in a split class.

Both of them are very happy to be back in school!

Monday, September 7, 2015

Life is a Beach

And not in a good way. In fact, you can maybe change out the ‘ea’ for a couple of other letters.

 Life is usually good. Playing on the beach, splashing in the water. But this past week it feels like I’ve been dragged into the ocean and I just have wave after wave trying to pull me down. One of 2 things, ok I can handle and still stay on my feet, but I just feel that it is one thing after another this week and I’m stressing.

This week we found out we got funding from Easter Seals for Nick’s porch lift. That is fantastic! $3000 we have towards that. But the difficulty is that now we have to come up with the other $2000 for the porchlift (OK we can do that) and the estimated $5 000-10 000 for the construction. The whole reason it has been such a long journey is the cost of the construction. I think paying $10 000 to put a door into the garage and a deck is insane. We have a second quote which is less, but have had problems getting ahold of the guy, which isn’t good.

OK that is one thing that has been weighing on my mind. How do we get the money to pay for this. We talked about March of Dimes (the home grant that is a one-time use, up to $15 000) and other funding options, but I make too much money (as a RN working full time, no overtime) and we are over a lot of the limits. It doesn’t help that they base funding on what we made last year when Kyle worked all year, but currently he has been laid off since February.

We also had Nick’s PT/OT assessment. It went well and I think the new system of PT/OT will work well. Hopefully in the winter we will look at doing some intensive therapy to get Nick using the crutches for school. But we talked about a home program and what we should be doing at home.
Nick has been using his standing frame this summer and has been doing well in it. They asked about tummy time. This is the first I’ve heard of tummy time to stretch out his hips. So we should be doing that daily. Nick also just got his new computer, so we need to do more work with him on that. We talked about programs Nick can do (karate, yoga, swimming, sledge hockey, basketball) in the community.

All of this is good, but then you think about all of the time. 1 hour standing, 1 hour lying, 1 hour on the potty, another 1 hour for cathing (4x a day for about 15 mintues). That is 4 hours every day! There is also computer time, there will be homework time, learning to read time, extracurricular time. Eating time, socializing time, playing time, school time, fun time and sleeping. So this is another wave that has been on my mind.

We had Nick’s school visit this week. Check out the new school, get his new EAs and teachers ready for him, get him used to the bigger school, bigger class size and all of the new people. Increase his independence because he won’t be supported as much. Hope and worry that socially he does well as a kid that is physically different from everyone else, as well as being shy. The first day of school, this first day of school has been a source of stress for a long, long time.
The visit went well, everyone is very supportive and we tried organizing as much as we could. Then we found out that Nick is in a split-class. And he is only 1 of maybe 5 kids in grade 1 and everyone else is grade 2. This was one of the things I worried about and didn’t want, because he is already a November baby he could be with kids that are almost 2 years older than him. We didn’t make a big deal about it, and will see how he does. But it is another thing I’ve been thinking and worrying about.

Last week (Monday or Tuesday) I contacted the bus company because we hadn’t heard about pick up or drop off yet… you know a week before school starts. Wednesday the bus driver called, but he had the wrong address for pick up. Not actually wrong, he had our home address and it is supposed to be our daycare address, which is one street over. He couldn’t change anything and said that school had to change it. OK, no big deal, went into the school on Thursday and they changed it, they said it may take 3 days to change. I had an automated number to call so I would know if it changed before Tuesday. Again, no big deal the wrong location is our house, we will just stay home for the pick up. Friday afternoon I get a call from the school. Because we changed the location the bus is now cancelled and won’t be picking him up at all. At the time I got called I was trying to sleep for my night shift, just said ok, I am off anyways and I’ll just drive him in for his first day of school. I asked about drop-off, but she didn’t know.

After I got off the phone with the school I started thinking (yes another wave of stress to knock me down). How could they just cancel the bus, like Nick doesn’t need to actually go to school the first day? How am I going to drive him? The parking lot will be packed, there is one accessible spot, the lot will be filled with school buses. I would have to park down the block. At least I am off work and can run around with Nick. Of course it got me more thinking. Why did they just cancel the bus! They put in the wrong address, they waited until the last minute to notify us. All we want is the bus to pick him up one street over! The bus actually needs to drive on that street to come to our house. We didn’t want it cancelled! He still needs to go to school, he is still entitled to go to school on a bus. Of course I also have stress about the ‘short bus’ mentality and stigma related to that, which I have been working very hard on.

With all of this I needed something to do (you know besides work 3 night shifts on a busy weekend, a hot and humid labour day, which is aptly named). So I updated my pamphlets for school and made a beautiful one (if I do say so myself) to go home with students the first day of school. The morning after my first shift, 12 hours without a break, I went to Walmart and picked up everything I needed for printing, including 2 full ink cartridges. I printed a couple copies and brought them into work Saturday night to show everyone. Sunday morning I started printing everything. After about 7 pamphlets (which is really about 15 pages) the ink ran out (I had printed about 50 pages with the new ink in total).

The brand new ink, that I just bought, that I just bought the last one in the store and no other local stores had it. I could (at 1030 am after another busy 12 hour shift) go to another store about 20 minutes away, pay another $40 and hope there was ink. Or I could get up early to go to the same store before they close at 6pm. Everything was closed on Monday. Kyle is up at the cottage with the kids (I have been home alone all weekend, not even any dogs) so I didn’t think of asking him to go. And Walmart is dangerous for us at the cottage…

I had 7 pamphlets that were usable, and 2 for teachers. There are about 30 kids in the class. The whole point of working on it all day Friday was to have it done for the first day of school.
That was it. I was done. I had a bit of a breakdown, posted on facebook and then went to bed. Kyle immediately responded that he would go and get the ink, so I actually slept instead of continuing to stress while trying to sleep and then stress that I wasn’t sleeping…

My night shifts are done for now, they were busy (they always are). I still have all of these things on my mind. I like things to be perfect and organized and have a plan. I like to know what is happening, and I want everything to go well. I am thankful that I have had a bunch of support on facebook, and reminding me that it works out in the end and that some amount of chaos is normal.

It just seemed that this week a whole bunch of little waves just knocked me down.

That’s ok, I’m a good swimmer!

Thursday, September 3, 2015

Getting Ready for School

So the big day is coming when Nick is starting his first day of school and joining his sister
We have done first day of school twice before (JKSK), but it was sending Nick to a smaller school, with a lot of support. This is sending Nick to a larger school, with less support and with lots of friends and kids who already know him

We had our pre-school meeting this week to make sure that we have everything in place for Tuesday. We had the school Physiotherapist, Occupational Therapist, Nurse, Special Education Teacher, Education Assistants, and Teachers. We went through how he transfers, and moves into his equipment, what equipment he actually has at school (standing frame, walker, school chair,  computer, canes, toilet supplies).

We showed Nick around his classroom and made sure he could get out the fire door (there is a step).
The classroom was set up so we knew where Nick was sitting and could see how he gets around the classroom.

We adjusted his school seat so that he is more supported. One of the things they had on every desk was erasers (which is on the latex list), but we checked and they are all latex free

 Nick was very nervous when we started. There were a lot of people that he didn't know, and he was the center of attention and we were all wanting him to do stuff. They wanted to see how he walks with his walker, so he walked around the room, sooo slowly and carefully. I had to laugh because I said he usually is much faster!
It took a while, but he did become more comfortable and he was soon racing around his classroom and telling everyone all about Ninja Turtles and different Avengers.

They  have a nurse coming in for the first little bit to teach the EA's about Nick's bathroom stuff. I am going to be going into the school on Tuesday to try to give them some pointers as well, all of those little stuff that works for Nick but isn't in any checklist.

Talking with the teacher we also talked about me sending in a pamphlet with some information about Nickolas to go to his fellow students (and parents). The teacher pamphlet is too detailed, and I wanted something with information about the equipment and also that the equipment is not a toy.

I wondered about putting my blog on it. I know from other families that it is findable, it isn't secret. So I thought it wouldn't hurt to have it on as a potential resource.

I just have to print off 30 copies of this for the first day of school. I also have a change of clothes, some gauze and tape (if the MACE leaks), a teachers guide to hydrocephalus, and a couple of the teacher handouts for the first day.

I'm hoping we are ready as ready as we can be for school on Tuesday!

Tuesday, August 25, 2015

Check-up and fun

We had our annual check up with Dr Rutka our neurosurgeon.

Nick has been more interested in his body and how he was born that I told him that we were going to meet the doctor that did his first surgery on his back, and put the shunt in his head. Nick wanted to see the hospital that he was born at (which is right across the road from Sick Kids)

Going downtown mean another ride on the train, which Nick was very excited about
We were also going to try to take the Subway as well. The TTC is somewhat accessible; some stops are accessible, but not all of them. It is difficult to find where you are going during rush hour, we were just past rush hour so we had some room to move around and try to find where we were going.

There is construction at Union Station, so there was a lot of turning around. But eventually we found out way (Nick wanted to know why we were going around in circles). But we got on the subway and to the right accessible stop (not the hospital one though).

While we waited for our appointment, there was a book talking about transportation (train, bus, subway, car and bike). Nick read the whole book with me!

He also played with some of the small kid toys... I told him he was too big for them
When Dr Rutka came in, he had a bunch of residents with him. All Nick could do was stare at these residents that were crowding at the doorway and looking at him.

Nick couldn't think of any questions he wanted to ask.
In the end, everything is good. His shunt is good. We talked about Nick's need for increased bracing and if we should be concerned about this (tethered cord). So we are going to have another MRI in the next 6 months or so.
When I was filling all the paperwork out, I was asking if we could try to do a non-sedated MRI. So I put that in the paperwork, and will talk to them more when we have the appointment.

Now that all the hopsital stuff out of the way, it was time for some fun!

First stop, street meat. We had a couple of different places around Toronto that we could visit. Nick decided on the Museum

So we walked up to the ROM (farther than I remember, and the accessible subway stop was a lot farther than I thought)
They had a Pompeii exhibit that I wanted to see. Thanks to the Easter Seals Access2 card our admission was discounted (Nick's companion... me... got in for free).

Nick and I had fun trying out toga's (they are much bigger than you think they are).

Nick wasn't sure at first, but finally tried it on

Nick wasn't that interested in all of the artifacts that were there, but we did have a whole conversation about the penis and nipples on some of the naked statues.

They had a huge screen with a blowing up volcano and ash in the background.

They had some of the casts of bodies, I wasn't sure what Nick would think. He was interested in the models of how the casts are made and wanted me to take this picture

After Pompeii we got to visit the dinosaurs

The T-rex

A giant turtle

And Nick wanted to see the pterodactyl

We also saw a new dinosaur they just discovered. A type of triceratops.

We explored a bit more and then headed to the gift shop and did some Christmas shopping (yes you read that right).

Then it was trying to find the accessible subway stop (I was too tired to walk back to Queens Park and the Museum stop is not accessible). After walking the wrong way a couple of times I did find the right stop. Walked into the station and had the guy behind the glass start yelling at me that we were in the wrong place and needed to go around the corner.
I went outside and looked around the corner, but it was just a driveway. I stood outside the station looking very lost and confused, with Nick asking why we were stopped. I'm trying to look at the TTC website and can't find it (I can only find the address I'm standing at). I'm sure I'm looking very lost and confused and a lady asks if she can help.
The subway is not exactly 'around the corner' more like down the street, down another street and then up the street. She was so nice to walk with us until we found our way.

Then it was TTC and Go Train during rush hour to get home.
My feet so much! But Nick got all checked out and had a fun day

Wednesday, August 19, 2015

Our new addition

We have a new member of our family!

Her name is Aurora, but we are going to call her Rory for short (and it's easier for her to learn). She is a Bernese Mountain Dog (just like Sammie) and she is 8 weeks old.

We got her from a breeder up at the cottage, Mount Magic and have been getting updates every week for over a month, and counting down the days until we can  get her.
We decided to introduce Sammie to his new sister at a neutral location, a local park.

He wasn't all that impressed with her.

That's ok, She made up for it by looking really cute.

This was the closest she could come

When we got Sammie we didn't have any children, but we remember the nipping and the tearing up the toys. And Sam actually ate our wall.... 4 times. So we were ready with lots of toys, and practicing with the kids that she will be nippy and she doesn't mean to hurt you, but she is playing and is only a baby

It was fun to go shopping for her, and buy all kinds of pink-girly toys collar, bowl and leash. Yes, we went all girly!

Nick has been really enjoying her and walking with her. She likes to go underneath his walker as he is walking, and tries to eat his wheels.

Once we got home the kids really like cuddling with her

I think someone is in love

She is really good. An excited puppy, but also loving and playing and still cuddly.

 Even Sammie is starting to come around