Hearing

I have been worried about Nickolas' hearing for a while. I am concerned because in the morning I stand at the doorway to his room, call his name, and he doesn't turn - sometimes. Was he ignoring me, or could he not hear me? That is the question.

Nickolas can hear. That is not the question. He can hear you talking, can hear the dog bark, the doorbell ring, his sister crying. He follows noices and looks up and flashes a gorgeous smile when you call his name. He babbles. He passed his infant hearing screen no problem (at 1 month old).
So what is the problem right? Am I just being a psycho mom? I'm not quite sure. There is just something. I've noticed that quieter noises he doesn't necessarily notice. Whispsers he is less likely to turn and look at you. I need to do some more exploring.

I've talked to multiple people about it and everyone says the same. If I'm still concerned we can screen him again at 1 year!
But I don't want to wait a year. When we were screened at 1 month we were told that because of the spina bifida and hydrocephalus he fell into a high risk group, and would be screened again in 3 months. When we went for our assessment at Grandview, at 4 months, I asked about screening and was told that he wasn't in a high risk group. He didn't need another screen. But if I was concerned I could contact the audiologist (hearing specialist).

About a month later (5 months) I decided that yes I was a bit concerned and so I called. They told me that they don't do more screening unless he failed his first test, but if I was still concerned at 1 year, to call again. I talked to his pediatrician at 7 months and said that sometimes he doesn't turn when I call him, but I downplayed it (I think) and said I wasn't sure if he was just ignoring me. I also told him the audiologist said that I had to wait for a year. He of course checked his ears and they looked clear.

I talked to every person we saw about how he sometimes didn't turn when we called him. But yes he could hear and he could respond to noises, and was babbling. These are all check marks in the infant hearing chart.

FINALLY a couple of weeks ago someone listened. Dr Church at our spina bifida clinic. I can't remember what brought it up, there are a bunch of things that I worry about, but turns into nothing. But I did mention about his hearing, and that I've contacted people and told people, but was always told to wait until he was one year.

Well, she said that 1 year was not a magical number, and if I was concerned then I should call again for an appointment and if they gave me a hard time, she would fill out a referral.
THANK YOU!!!

So we do have an appointment for follow-up on his hearing. Hopefully get some answers.

9 months

Nickolas is 9 months old today.
And another lucky Friday the 13th! I am amazed at how far we have come. How much Nickolas has grown, and how much I have grown. I've heard it before that you learn so much when you have a special needs child. That you look at life a whole new way, take time to appreciate the little things, you appreciate everything instead of taking things for granted.

Nickolas is doing so much. You can hear the wheels in his heading turning, trying to figure out how to do something. Usually it involves trying to get Katheryn's toys, clothes, hair or just Katheryn. He is rolling to get himself places, or just squirming around. I got foam squares that I put him on, it's nice and soft and means he's not picking up dog hair and putting it in his mouth. We have a big hairy dog (Bernese Mountain dog) and there is hair everywhere!! Seconds after I vacuum it is back.




I took his 9 month picture, I take it and you can see how much he has matured over the month. So much more than when he is in front of you every day.

Here is our 7, 8, and 9 month pictures

Nickolas in the SB&H Bulletin

Nickolas - Current

Enjoying Ourselves

First of all: Nickolas got his first TOOTH!!!!

He is not as happy as we are. But a couple doses of tylenol, some frozen vegetables in his net-thing and we seem to be getting through ok. He is irritable and I've checked his shunt more than once over the last couple of days - even though I know it's teething - always nice and soft.

I haven't been able to get a picture - but it is a bottom middle tooth. And a think it's partner is ready to pop through any day as well.

You might think talking about teething is a weird way to start an 'enjoying ourselves' post. The enjoying ourselves are because we were back up at the cottage on the weekend... and that's right we were enjoying ourselves.

The kids got a new swingset - that's thanks to their Lefebvre cousins (who had outgrown it). Kyle had fun putting that together.

But Nickolas enjoyed himself watching all of the work being done.

We didn't really get a chance to play in the lake. The weather wasn't agreeable. But that didn't keep Katheryn away, she loves playing in the water. Whether it is lake water, or rain water.

Her grandma was more than happy to take her out in the rain.

Then the problem was bringing her back inside...

And we can't talk about enjoying ourselves without a picture of some kisses!

Follow up - Urology and Ditropan

Last week was a crazy week and so I didn't update as soon as I'd planned. Thought I'd put up a water picture, since we are talking about urology (pee medicine). This is Nickolas discovering that if he dumps the water from his sippy cup out, he has a whole new water toy!!!

He got totally soaked - but it was worth it!

We were at home for 3 days, unpacked, cooked, cleaned and went to appointments, then packed again and and back up to the cottage. The kids don’t seem to mind the busyness. We were back at Bloorview for another physio appointment – we go every week. 1 hour there, 1 hour physio and 1 hour back. I really like our physio, I’ll be really sorry when we get accepted to our local children’s rehab, but I will not miss those 3 hours every week! But I will really miss our physio – she actually makes it worth those 3 hours.

When we were there we also got to talk to Julia, Nickolas’ nurse. She helped to clear up our ditropan questions. She was really good, I felt stupid that I hadn’t asked these questions at the time. But she completely understood that sometimes you just need to think about it, or talk to others and then a whole bunch of questions come pouring in!

Ditropan – we have started it. We are starting very slowly 1 mL once a day for the first week, then twice a day for the second week (where we are now) and then three times a day for the third week. Then we start increasing the dose to 1.5mL if he tolerates that. Nickolas is getting a little flushed sometimes, and we have increased his Miralax/Restoralax (laxative) but so far so good. We are getting more volumes when we cath and while he’s not quite dry between, we are getting there.

It is such a change to want dry diapers instead of wet ones!!! I’m not too sure I like it. But the idea is to relax his bladder, so it doesn’t have to work too hard and damage itself and the kidneys. So a relaxed bladder means more volumes when we cath. A fully relaxed bladder means dry diapers in between.

So the reason we are on ditropan is that even though Nickolas does pee on his own, and he does hold urine, a child with spina bifida would not have a completely flaccid bladder. The bladder and the bowels receive confusing signals from the brain because of the nerve damage. The bladder reacts by freaking out and spasming. The bowels on the other hand, get confusing signals and just give up, don’t do anything and wait and see. Constipation.


The ditropan calms the bladder, but it also calms to bowels. The spasming is important to stop because it will force urine into the kidneys and damage it. As well, the bladder is a muscle and a muscle that is overworked (insert picture of bodybuilder here) gets hard and thick. Hard and thick means damaged. This is all that we are trying to prevent/stop. This will also protect his kidneys. One of the most important things to do is protect the kidneys.

So here we are. Starting ditropan, off antibiotics. The ditropan is working – we are getting larger volumes, so I guess that is a good thing.

Oh we also decided on the circumcision issue. Boy did I open a can of worms with that one! After looking through different sites and reviewing discussion started by another mom who has a son with SB I decided a couple of things. 1. Circumcision has been shown to decrease incidents of UTI’s (bladder infections), 2. Spina bifida does come with a risk of UTI’s, 3. Nickolas has not had any UTI’s [knock on wood], and 4. We have some time to decide. I don’t want to go past 18 months before making a final decision – once he realizes what his penis looks like I don’t really want to change that. So for now we are waiting, with circumcision an option if his bladder starts to act up.

And there we are.