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!

Clinic

We are starting to get into our clinic-heavy time of the year.

Our spina bifida clinic has been divided up into individual appointments, which makes a very long day into 2 long afternoons (which are on a Friday of course).

We had our appointment with Dr Church, Nick's developmental pediatrician the first week. It went well, he is doing great (of course). We talked about Nick's MACE, which is working well, and his bladder leaking, but our urology appointment was the following week. Dr Church (who we love, and who also has spina bifida) says that since we have bowel continence, we should try what we can for urinary continence. We are close, but not there yet.

We talked about the increased bracing, which we will follow up with, with orthopedics in the fall and neurosurgery next month.

We talked about Nick's diet and fluid intake, skin integrity and any other concerns. Nick has been getting so much better with drinking water, which has helped with the overheating he used to get (and switching from oral ditropan) Nick got to steal some of my iced cap after drinking his water.

We also talked about self care and independence. At 5, almost 6 Dr Church felt that he was old enough, with enough dexterity to learn how to self-cath. So that is our goal to be ready for the start of school. Nick was very receptive to the idea and solemnly told her that he would learn. My concern was about bladder infections. But she said that we can tolerate a couple of infections for him to get his independence (and we haven't had a UTI in a long time)

That was one appointment down. Everything is good.

I wasn't able to go to the next one, the urology appointment, but Kyle was there and I gave him a list of stuff that I wanted him to ask. To get that bladder leaking figured out. Botox is on the top of my list, or maybe increasing the gelnique?

So Kyle went with Nick and we came out with a plan. The 2 treatment options involve general anesthetic. Which is more invasive than I thought it would be. The options are putting in a bulking agent, to bulk up the ureter so it doesn't leak or botox that will relax the bladder to keep it from spasming.
Both are options that do different things for the same symptom.
The other option that we have is do some tests to see why we are still getting leaking. This, of course is what we want to do. Why treat blindly when we can try to determine what the best action is.
So in the fall we are going to do a VCUG and urodynamics study and then come up with a plan after that.

We also asked about increasing the gelnique (which is a bladder relaxant) but urology said that he was at the upper end of the dosage. So that's not an option.

I'm hoping we can have the tests scheduled in September so that we can get our plan in place. And then the last part of our clinic in the fall.

Catch Up and Can't Catch Me

So much to catch up on.
So much I’ve missed blogging about. I’m catching up now (I've spent 2 days catch up with all my posts).

Because I hate having things out of order, I’m going to write a couple of different separate posts –

backdated of course.

- We worked on walking in the walker
- We had an EEG
- I talked to a couple of classes
- We had Nick's walker tuned up
- Nick got his new AFOs
- We had a Christmas party at March of Dimes (CE)
- Had a Santa visit and other holiday parties

We’ve had a really busy couple of months, and every time I think it’s going to get better, I just seem to add more things to my calendar. But I’m hoping for a bit of breathing room. The last 3 weeks of December I’m leaving appointment-free. It’s like a vacation!

Of course while I'm trying to catch up on all of the exciting stuff in the Ridding household - Nick continues to show off!
Literally, while I'm on the computer he decided that it is time to conquer those stairs!

I guess I can check that off our - to-do in physio list!
Nick has LOVED exploring the stairs.
Every time I turn my back - there he is. And he laughs! Because he knows I don`t want him on the stairs when I`m not there. He hasn`t fallen, but I don`t want him to.

I tried putting a gate up (I know - mommy trying to quash Nick`s newfound independence). But that doesn`t work with a 3 year old in the house.

While we are talking about catching, Katheryn has some catching of her own.
We had a little bit of snow - and Katheryn had so much fun running around catching snowflakes on her tongue!

Cool New Shoes - and Braces

We had a whole day of appointments! But really, what else is new?!

I brought Nick to a committee meeting at work - where he charmed everyone - of course! Then another quick visit and off to mom and baby group, where we left early for our Orthodics appointment and new AFO's.

This wheelchair thing is alot better than the stroller. It lets Nick have some independence, and it is also easy to for me to walk with. I have been trying to actually walk beside Nick with my hand steering, instead of behind. I couldn't do that with the stroller.

So we brought Nick's new Alfie with us for some entertainment.



It took about 1 hour in total, for adjustments and fitting.

We did a little bit of testing it out.

The end (toe) is still too long for what I'm liking. But not any longer than his last pair of AFOs.

Nick's new design is completely his own idea. The Backyardigans are his absolute favorite! He points to all of them and says each of their names.

Nick didn't have any problems adjusting to his new braces.
I was a little worried that there might need to be some adjusting to the length of the brace - or that he wouldn't like them.

But no, no problems at all.

We got Nick some new shoes as well - these one light up when he walks - but he can't see the lights...

And I already have plans for the old ones. When we are swimming in the pool, Nick likes to stand up against the side, and of course his ankles makes me cringe.
So with some swim socks and his old braces, maybe it will help.

Appointments, appointments... and ... wait for it... more appointments!

Our summer has been very, very busy!
I feel like I've been a little lax on the updating. Sure I've posted a bit, but not as much about what we are doing. Why? Pretty much because we are doing it!

We started physiotherapy at Grandview in June.
We continue to see Katie our infant development worker.
We continued with our private physio.
We had speach therapy with Katheryn
We had an MRI at Sick Kids
We followed up with neurosurgery at Sick Kids
We saw a developmental peditrician as part of a research study
We saw our regular pediatrician for a weight update (27lbs 9 oz)
We had the spina bifida clinic (split into 2 days)
We had the Conductive Education consult
And finished the summer with 2 weeks of intensive Conductive Education

We also had trips to the zoo, a number of weekends up at the cottage, a family reunion and a whole lot of birthdays (and 1 birth-day)! Oh, and I continued to work part time, luckily I have a great work partner and we were able to schedule around each other well. The joy of 12 hour shifts is that I work less actual days (or nights), you are just wiped out when they are done.

When I look at my calender of July - I have 5 blank days. 5!!! And August was the same!
Kyle claims I bring it on myself - and I guess I do.

But its summer time! Its the time to fill the days with fun things to do when you have time off. And fill the rest of the time with what you need to do!

At the end of the summer (OK I know its just the end of August and not actually the end, end of summer) I want to look back (and have the kids look back) and think that they had alot of fun with parks and zoos and lakes and cottages. And at the same time we have Nick in tip-top shape - completely checked out.
Neurosurgery cleared us for 1 year!
Spina Bifida clinic cleared us for 6 months.
We are nearing the end of our block for Grandview Physio. (and we have a borrowed walker for now, and will order one at our next visit)

We are investigating some other therapies. We have our private physiotherapist and a second private physiotherapist that is also an osteopath (and fantastic!) and we are going to continue the conductive education (weekly). So September is looking slightly less busy, but still productive. And some recreation activities.

I'm amazed at how productive and great Nick is doing!
In May Nick was not transferring lying to sitting. And now!
Pulling himself up to stand, climbing over a single step. Kneeling really, really well. Kicking up, down, side to side.

He has a couple of words too (weird words, and he'll say them for a couple of days and not repeat them). And when we try to get him to say something - he gives me a look, like he's saying - Ha! You can't make me and I will grace you with some words when I feel good and ready!

Hugs all around!

Some Reality and Foot Stamping

For the last couple of months I can almost forget about what Nickolas is not doing. Forget is maybe the wrong word. I know what he isn't doing, what we are working on PT at him doing. Maybe it is really that I never forget what he isn't doing but I try not to look at what he isn't doing, and concentrate what he is doing.

Until I come face to face with babies the same age as he is. Babies who are crawling around, getting into trouble, coming up and pulling themselves up on their mother's legs. I want that.

OK I know that I am being unreasonable. That I will get that tugging at my jeans eventually. But I want it now! [insert foot stamping here]

We go to a friends house, with babies all the same age. 10 - 11 months. The other babies get put on a mat and are immediately off and crawling and exploring. Nickolas is put on the mat and he stays there, or rolls around but isn`t pulling himself up, isn`t playing with all the toys. Just playing with what he can get.

It just shoves reality in my face and won't let me look away.
I always thought that I had reasonable expectations for Nickolas, that I concentrated on what he could do and not at what he couldn't. That all that mattered to me is a happy child and mobility doesn't matter. I didn't quite realize how much mobility effects so much development and interaction at this age.

But as another fellow blogger mother has pointed out. He's not sad.

Yeah we're all laughing here.

Hopefully tomorrow will bring a better day. We've had 6 appointments (pediatrician, naturopath, opthamologist, repeat hearing test, urodynamics and physio) in the last 8 days. So I think I'm a little SB sensitive today. All the appointments went fine.

Not wanting to leave maternity leave...

August has come and gone. That means that ... gulp ... fall is right around the corner. Fall means thinking about going back to work. I have never been so glad and thankful for the one year maternity leave. I’m not back until November 11 – it just seems to be creeping up that much faster. I said I wouldn't think about what I wanted to do until summer was over. September (to me) means summer is over - you wouldn't know it from our heatwave though.

While it will be nice to have some more adult human contact, I’m not that excited to go back to work. Then we’ll have to juggle the physio, doctor appointments, tests and my work schedule. And then there is the question of part time or full time? Going back to the hospital only, or apply to a college/university?

I just don’t know.

So far all the extra appointments hasn’t affected our lives that much. I just have to talk to Jenn (Katheryn’s daycare) about changing dates or times. No big deal (Jenn is an absolute Godsend!!!). But when I’m back to work I can’t just say yes I’ll take that first date. And I can’t get a consistent day off every week.

And we are doing physio once a week, OT might be in the future soon, hearing screening and whatever therapy might come from that, paediatrician appointments, urology tests, SB clinics and the SB group (something I am NOT giving up when I go back to work). Then we need to add Katheryn’s speech therapy as well. That seems like a lot, and it is not all the time, but these are just the appointments I keep thinking of when I imagine going back to work full time – and jamming all of those into my free time. Not to mention working on physio, speech and playtime at home.

No wonder I’m feeling a bit overwhelmed when I think about work!!!

I guess that is just the story of going back to work with 2 kids.

Talking about 2 kids....