School Report

We had a parent-teacher interview this week.
I didn't really think that much about it. Go to school, see how Nickolas is doing. No big deal.

Except that I kinda feel like I was punched in the gut.
Nickolas is in Senior Kindergarten, getting ready for grade one next year.
He is learning his letters and counting, even some basic addition. Reading his book at home and recognizing his sight words. I thought he was doing good.

His teacher showed me a video. In it he was talking to another boy about what they learned about an apple. The different parts.
On the video he wasn't able to do it.
This was something that they had learned, and he wasn't able to talk about it.

We talked about his letter recognition. She said that he lost some of his letters and sight words over the summer. I will admit that we didn't work on them. Instead we went to camp, had surgery and recovered. Should we have worked on letters? I guess so

There are still letters that he doesn't recognize, specifically "G, H, b, g, h, p, q, u, y"
He doesn't draw. He still prefers to scribble instead of actually making shapes. I have this picture he drew a month ago. But it is one picture, the rest of his pictures are scribbles.

I came out the interview discouraged.
How far back is he?

What can I do to help him? Is this part of it? Is this part of spina bifida?
The difficulty learning? Is he showing a learning disability?The ones they talk about at conferences, related to spina bifida/hydrocephalus. They talk about IQ and standard deviations below average. Is he showing that?

But he isn't. He is smart. He loves to read, he has some difficulty but he will still try (with encouragement). He counts, and he sings. He writes his name, he will tell me sounds and numbers.
When we got home, I pulled out an apple for him. He did tell me about the apple and some of the parts.

I talked with his OT about the writing and letters. She said that he works so hard on making the moves for writing when he has so many thoughts he wants to get out. We talked about a laptop as an educational aid. So he can show off his knowledge about letters and numbers separate from the skill he is still working on to write.

Nick got his report card as well. Personal and Social development, he got 2 out of 10 marked as an expected level, the rest developing. Nothing under science and technology, half of the arts, for language, another 2 out of 10 items.
Kyle told me that developing is what he is supposed to be doing. That it is too early to start worrying and getting upset. And it gives us areas for improvement

But I still have this heaviness in my heart when I hear about the limited progress he is making in school activities. With the physical, the mobility and the bathroom issues does he really need to add intellect to this list of things Nick has to work extra hard.
Can something come easy to him? Easy like it is to everyone else?

Kindergarten Katheryn

Katheryn is going into Kindergarten in September.
She is so excited!
She is so ready!

She is miss-independent

We have a whole list of things we have to get used to through the summer; snack time, labelling, healthy lunches, early bed time, indoor shoes and outdoor shoes...
We just need to get used to some peanut-free products

 Last night Kyle and I went to the Kindergarten-information day
We learned more about the full-day kindergarten program in Ontario
And we really liked what school we are sending Katheryn to - it has the same feel as the school that Kyle and I went to.

They showed alot of pictures about the program and what they do with play based learning
And I just know that Katheryn will have no problems adjusting to this new phase in her life, she is so inquisitive!

I'm reasonably sure that mommy will not have many problems adjusting to the new phase in Katheryn's life. I don't think that I'll have difficulty in September on that first day of school.

Beyond of course, that she's starting school! No longer at home, only March breaks and summer vacations to be at home with us so often. A new stage... No turning back. School!
OK I'm good now.

I'm not worried about the actual curriculum, we didn't get to explore half day kindergarten or different types of curriculum (other than many years ago when Kyle and I were in kindergarten - then all I remember was how big people were).
I'm actually excited about it. It looks fun and alot like what Katheryn currently does in daycare - and a little bit like what Nickolas does in conductive education.



 While we were sitting in the library and learning about everything we need to know about kindergarten and all I could think was - what will it be like for Nickolas next year?!
Of course I feel guilty, this is about Katheryn, not Nick. But Nickolas is going to be following next year, and we are going to start kindergarten registration/information in November to get them lots of time to make everything appropriate for Nickolas and whatever additional supports he would need.

So that's what is giving me a heavy feeling in my stomach as we are getting Katheryn all ready and excited for kindergarten. That Katheryn will transition no problem, but I'm just imagining all the problems we will have next year with our next kindergarten registration information day.
And I'm not even getting into the school bus (potential) issues!
I think that will have to be another post. I've been told and reassured that it is fun riding a school bus. But every time we start talking school bus for Katheryn, I still think about what kind of bus will Nick need to ride in?
Where do I have to get him so he can ride the school bus with Katheryn next year...

Park Place

We had a play date at the park recently. With cousins Madison and baby Austin.

Driving over - we have a great big one by the lake (incidentally where our SWWR walk is going to start from this year), I started wondering what exactly Nickolas will be able to play with and access.
And so I started to worry.
Should I bring his walker? What if other kids knock him down? What about the wheelchair? What if he just doesn't want to do anything?
Is this how it is always going to be at the park?

There is a big pirate ship with slides and everything. And it starts with a ramp.
The wheelchair wasn't really an option - I did bring it, but pretty much it just sat in the corner and got stuck when we tried to take it off road.
Nickolas did go up the ramp and down the slide a couple of times - walking, holding my hands (he is on a bit of a walker-strike).
And he loves going down the slide with me!

OK so maybe I shouldn't have worried so much.

Nickolas did have fun - mostly with the kiddie train - he could move around the area - he is the cruising master right now!
Nickolas even played a bit with his cousin Madison - there is only 7 months between them, but Madison and Katheryn are much closer.

We even got some picture time with baby Austin (we probably have to stop saying baby - he's 10 months old - and already walking!)

 After the park, Katheryn really wanted to go down by the beach.

So we played on the rocks for a bit

Took some pictures with grandma!

Tried to take a nice mommy and kids picture.
Well all 3 of us are in the picture!

And grandma showed them how to get their shoes wet!

And throw sand in the water!

It was a great spring day.
The kids had a great time, Nickolas definitely showed me that I was worried about nothing.

Shunt watch

I really dislike shunt watch. I like to think the shunt is nice and happy and working well. I hate the thought that the thing in my sons brain that makes him healthy could stop working at any time, for no reason!

But I also know it is a necessary evil. And while I might wish he didn't t have it, that he was one of the lucky ones who have been able to miss this particular aspect of spina bifida, I have to be realistic that he just wasn't in those odds. That it just wasn't meant to be. He has a shunt and it is there to stay.

Shunt watch has different levels (sorry I couldn't resist these colour watches!). Green (everything is great we are good to go, measure every month or so, know what the symptoms are) Yellow (something is going on, not sure what it is, will continue to observe and measure, contact doctor by email, post on forums), Orange (something isn't right but I'm not sure what, I'm thinking of what I need for my over night bag, who can cover my shifts and where to drop Katheryn, but not packing yet - continue to watch and pray, its not an emergency, contact the doctor directly), Red (call the doctor, pack the bags expect the worst and hope for the rest), Black (heading in, no question we need help, hope and pray).

We haven't actually hit all these stages. Nicks last revision was probably a Red. This past week we had a yellow/Orange. I thought that things were probably ok, but something wasn't right.

Nicks fontanelle closed a couple of months ago. I had just done a whole "assessment" on the Monday - measured and plotted his head, felt everything and it was all a-ok!

Tuesday night, we are all in bed, I'm fiddling with his hair and feel his shunt. What the?!!
His shunt had moved. You could feel the bulb had shifted and the tubing before it. Oh no.

Nick looks up at me, flashes me his smile and goes back to laughing and playing with his sister. OK, deep breathes.
He's acting fine, no swelling or irritability, he's sleeping normally. He's acting the same! I really don't want to bring this happy kid into the hospital and have them tell me he needs surgery!!!

So I waited until the morning and contacted his neurosurgeon, left a message. Waited and watched. And posted in the babycenter forum. I kept silent for everyone else. Didn't want to make it real.

Shunt watch Orange moved to shunt watch Yellow when other moms said they had similar things happen. Nick also continued to be fine, none of the symptoms I was looking for. I kept feeling his head and it still was feeling wrong, but not wronger.

I thought about it, a lot. What if the shunt was out of place, what if he wasn't showing symptoms? What if we did the shunt series (ultrasound, x-ray) and said it had shifted. But he's symptomless. Would I want to wait? Pretty much. And shunt shifting wasn't on my list of signs to watch form
 

About a week later, and firmly in code yellow, I messaged his neurosurgeon again, who reassured me if he was symptom free there isn't any concern.

So we are not in green - yet. Maybe a lime green. I'm not 100% reassured, but I can sleep at night, and blog about it.

I can't say why I was so hesitant to talk about it. Why I was scared to put it in words or writing. But for now everything is good.

More than good! Nick is having a blast exploring and not showing any symptoms of any kind.

Questions

Am I doing enough?
Is there more I can do?
Why can't he do this, or that or something else that I see other babies with spina bifida doing, who are at similar levels.
Should I try to get him more equipment?
Does he need more equipment?
What are we supposed to be doing with physio again?
Is that enough? Too hard? Too easy?

Will he ever do this? do that?
Why can't he do it now?!

Am I babying him?
How should I push him harder?
Am I missing something?
Should he be doing that?

Are we reading enough?
Are we playing enough?
Is he sitting too much?
Has he crawled enough today?
Is he getting enough stimulation? Is he crying because he got too much?
Should we go out more?
Are we sleeping enough? Too much?
Is he eating/drinking enough?
Did he get all his fruit/vegetables/grains?
Did he get all his meds?
When did I cath him last?
What was his poop like?

Why isn't he talking?
Should I be doing something more?
Just say mama or dada or doggy! Please.
Do I talk enough with him?
Should I have gotten him an assessment sooner? (we go Feb 1)
Should I get more therapy?

And that is just all about Nick! I'm not even going to get into Katheryn or me or Kyle or finances or cleaning the house, cooking dinner, laundry, exercise, diet or when was the last time I went out with friends, or with Kyle. And poor Sammie (our dog)!

I guess what I should really be asking is:

Is he happy?

Is he loved?

Are we all?

Well, case closed. (for now)

Midnight worries

In the middle of the night, when you have a crying, screaming baby in your arms that will not calm down no matter what you do, certain things go through your head.
I should mention that I had said a couple of times that I think Nickolas is teething again. Tooth #7 is ready to make an appearance, but I have no idea what tooth #7 it is. So far the tooth has stayed out of sight, but with red cheeks and swollen gums and waking up in the night, I thought it was a no brainer. And I should probably mention that Nickolas does not do very well with teething. It takes about 3 nights of screaming and tylenol before the tooth breaks and he is happy again.

All of that being said, when it is 2am and you have an inconsolable baby trying to throw himself from your arms you are pretty sure it is a regular baby thing, but are also thinking about all of those other things. And just the things that went through my head were:

 #1 SHUNT!!!, yes we made it a year, but who is to say we don't need a revision after 13 months. And it does not help that his fontanel is almost closed, about dime sized. As I'm trying to find it, to feel it, when he's not screaming - because a fontanel of a screaming baby is always hard. Then we noticed that his shunt felt boggy. Really?! Really!!
Now this is mid-scream, but I'm already going through the steps in my head. Where do I have the neurosurgeon on call number, would I have to drive down to sick kids on my own. I'm supposed to be working tomorrow, could they do a head ultrasound at 3am, or would we have to wait until the morning, what about an MRI, he needs to be sedated for that. When did he last eat? Should I get dressed, I would need to pack a bag for us. Please, please, please don't be the shunt. Lets go through the symptoms, no vomiting, irritable, eyes? Open your eyes kid, let me see - nope too busy screaming. OK no sunsetting.

Lets go through the other possibilities...

#2 Constipation. We are currently in the midst of a constipation battle. Did he go today? did he go yesterday? What did it look like, how hard (sorry if TMI)? What if he's impacted, no he went today, it's getting softer, there was enough... His belly feels hard (yeah - because he's screaming!) What if it's something I missed? What if I didn't get aggressive enough with his constipation, what if I got too aggressive and it's gas?

#3 UTI (bladder infection). He drank lots today, maybe he needs to be emptied. Check, what did it look like (like I know - I cathed him practically in the dark), is it dark, smelly, painful? I don't know! Does he have a fever? No - OK probably not UTI.

Which leads up back to teething.
From 1am to 3am Nickolas was soooo upset. He wanted up, he wanted down, he wanted mommy, he wanted daddy, he wanted to be rocked, he wanted to lie down, he wanted on his belly, on his back. We gave him tylenol, we changed him, we offered milk (he never drinks at night), we let him pick whatever position he wanted to be in, we held him tight in whatever position we thought he should be in. We stayed still, we rocked, we rubbed his back, we rubbed his head, we rubbed his forehead.
At this point I have no idea what actually worked!
But it did. Oh and his shunt went back to normal and his fontanel was flat.

In the light of day I am expecting some little slivers of worry to show their ugly face in Nick's swollen gums any day now. In the meantime, I am very glad I'm working tonight! (Poor Kyle)

A potential other cause for the late night worries:

Notice the 2 layers of food - spaghetti and meatballs topped with chocolate cake and icing! Yummy during the day, maybe not so much from 1-3am!

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.