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!

Friday, August 27, 2010

Boys Clothes

I never realized how clothes-lucky I was having a girl first. Even for the first 6 months I didn't really know what other mom's were talking about when they said that the selection for boy clothes sucked.
Then I started looking for something that would fit Nickolas now, that was cute, not striped, not plaid, didn't have any weird characters or faces on the front and would go with a blue and red dress that I had for Katheryn. Simple right? Not so much.

The boy selection, which takes up the little tiny corner of the girls section that isn't being used has either stripes, plaid, faces, characters or is white. Seriously.

I've gone to multiple stores but just can't seem to find what I'm looking for. I guess that's why moms like shopping, I just wish I could find something! Not that I don't bring clothes home... The closet has lots of stripe shirts, some tigger things and a couple of plaids. I'm trying to stay away from onesies for the next little while because Nick gets too hot without the ability to pull up his shirt (Katheryn did too - but the ditropan just makes it worse).

Not only was I lucky with Katheryn with the selection of girl clothes, but my teeny, tiny little girl hardly grows out any clothes before I get bored with them. She can still fit in 6-12 month shorts!! Only now she's sprouting up and getting too big for some of her dresses - out come those shorts and we have another outfit!

I am currently refusing to buy Katheryn anything smaller than a 2. Sure it's a bit big, but now it's length we are looking at.
We don't usually grow out of anything without wearing it a LOT of times!

This is showing Katheryn's 'sad face' when we find something that doesn't fit her anymore.




Talking about sizes , I decided to pull out the big guns today when I was shopping. No little 12-18 month clothes for my 9 month old. I don't think so. We are heading straight to the 18-24 months, even a peak at 2 year old sizes.

This is how I've been trying to get away with some 12 month clothes:


OK I love the belly, I really, really do - but it might be time to put this one away.
And while I'm at it, I guess this one needs to go too


So what does 18-24 months get us? Well, first we get to skip the fight over the head and protecting the shunt. And of course all they have is more cute stripes, but here we go:


Wow a shirt that actually fits...
Lets see how long that lasts!

Thursday, August 26, 2010

Photo Time!

I was looking over some of my favorite blogs - I have a bunch - and saw some naked pics taken of a 3 month old cutie - and I was inspired!
Out come the sheets, the towels, the camera and the smiles! (Not that the smiles ever go away!)

Here are some of my favorites:

Having Fun! - and look at that tooth!

Happy to be 'free'


ALL SMILES!!!

I wanted pictures that do not hide away from his scar. It is part of who he is - not that I want to showcase it. Wait a minute. I DO want to showcase it. His scar is just one testimonial of the surgeries and struggles that he has overcome in a short 9 months.

A website I've been on, I can't remember but I think it sells SB related jewelry, has a picture of her child sitting on a beach. It is a bum picture and at first you are shocked by the large scar, and then you think, wait a minute. This isn't something to hide.

So here is my baby boy! In all his glory!!!

Sunday, August 22, 2010

Park Time!

We have the most wonderful park a short drive from the house. And stupid me just found it. It’s right by the lake and has a wonderful walking trail, a snack bar, huge trees, a splash pad and a great park!!!


We went and checked it out the other day and Katheryn had to be (literally) dragged away. Katheryn was running all over enjoying the slides and the ramps and the trains, the pirate ship and the bouncy things and wheels that turn, knobs that twirl and the wood chips and.... Every time she turned around it was like she found another wonderful thing to play with!

I was trying to juggle the 2 kids, watching them to make sure they were fine. It was either sit with Nick and watch Katheryn from the distance, or chase Katheryn around the park and watch Nickolas from a distance. Or carry my 25 lb 'little' baby around, fighting to keep his hat on AND chase Katheryn around the park. Pretty much I did all 3. This must be training for when both kids can be running in opposite directions and I have to watch both of them.
Nickolas thought the park was great because there was nice shady trees he could sit under. He LOVES watching the leaves blowing on the trees. Since we live in a new development we don't have grown trees for him to look at - so parks, cottages, grandparents are when he gets this treat.
But he lies under the trees, laughing and talking to himself and just having fun!


When Katheryn wanted a break from running around she wanted to 'tee-tell Nick'. Which he loved of course!

Friday, August 20, 2010

Normalcy

Things are normal, we have a rhythm. We've hit our stride. Spina bifida is not the first thing we think of everyday, or the last thing every night.
I'm not quite sure when that happened. But it happened.

We have a routine now, that part is new.
Nickolas is actually on a nap-time routine! Yay!!! And he is sleeping more than 10 minutes at a time - sometimes I can even get an hour... or (yay) 2 hours! I've probably jinxed myself now I know.
Maybe the routine is what has helped me feel more normal, that I'm able to anticipate our day. Get out in the world, enjoy the last days of summer.
Not that we stayed at home before, I was just finding I'd look around and all of a sudden it was 4pm and time to get supper ready.

Normalcy has developed. What do we do with Nickolas that we didn't do with Katheryn? Not so much. We play the same games, sing the same songs, go for the same walks, play with the same toys.
Nickolas is less mobile. He's got rolling down pat, but not enough to go to where he wants to go.

Our days are cuddling, playing, diapers, baths, eating and cooking. With some outdoor walks or parks thrown in for good measure.
Yes the diaper changing involve cathing and the eating involves medicines and outdoor time involves careful monitoring of temperatures and finding cool shady areas. Oh yeah and playtime involves physio... but shh don't tell Nickolas he's working!

Sunday, August 15, 2010

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.

Friday, August 13, 2010

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

Monday, August 9, 2010

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!

Saturday, August 7, 2010

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.

Friday, August 6, 2010

Spina Bifida Awareness

I am all for spina bifida awareness. I think there should be more of it, I welcome more of it.
I saw a recent post on facebook about a series of ads the SBA (Spina Bifida Association) is playing in Times Square. I though Perfect! Lets take a look at it!
I was excited that some public awareness was finally going to happen - then I saw the ad.
Folic Acid Awareness.

The ad was all about the importance of taking folic acid so your kid doesn't end up like mine! That is how it makes me feel!!! Did they show any kids with spina bifida? Did they try to straighten up some common misconceptions about spina bifida? NO!

Their "spina bifida awareness" campaign was all about preventing spina bifida (and you can't prevent it 100% - me, and alot of the other moms were taking folic acid) Folic acid statistically decreases the chances of having a neural tube defect, but there is no one cause of spina bifida.

You can view the ads here. Give your baby a healthy start and Give your children a gift today .
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.6150369/k.5F15/SBA_Times_Square_PSAs.htm

This is what they say:
Give your baby a healthy start
Spina bifida is the more common permanently disabling birth defect in the US
8 babies are born with spina bifida or a similar defect every day
take a multivitamin with folic acid daily before pregnancy to give your baby a healthy start


Give your future son or daughter a gift today
Take a multivitamin with folic acid daily before pregnancy to help prevent birth defects like Spina Bifida
Their future depends on what you do with the present


Thanks for that. Those ads just make me so aware of what spina bifida is. It doesn't blame the mother at all!

Thursday, August 5, 2010

The Cottage Life - Part 2

Family. The joys of family, the fun of family, the support of family and the acceptance of family.


I am blessed with the best family – my own family, that Kyle and I made together, my immediate family (birth and in-law), and our extended families (grandmothers, aunts/uncles, great aunts/uncles, cousins, second cousins) and those we call family. This family has never questioned decisions we have made, has not offered unwanted advice, and have rejoiced in the accomplishments of Nickolas and Katheryn.

So what brought all of this on? All the family that we saw when we were visiting the different cottages. Everyone wanted to hold Nick – and Nickolas wanted to be held by everyone. No shyness – no ‘where is my mommy’ just aah a nice shoulder I can snuggle into.



(My camera’s battery died, so I don’t have alot of pictures at the family reunion at Kushog)


We even got some physio done while we were out – working on rolling and sitting, with everyone cheering him on.


Nickolas even got to enjoy some time out by the fire. But he was pretty sleepy at the same time. He slept alot better at the cottage than Katheryn did the first (or second) year she was there. Thankfully we had no 2 hours screaming fits at 2am.

But Cottage time, reminds me of family time – and how I think I have the best there is!

Tuesday, August 3, 2010

The Cottage Life - Part 1

Can you get vacation if you are already off on maternity leave?


We spent 6 days visiting family and enjoying the carefree, relaxing life of the cottage. In 6 days we travelled 450 km (275 miles for my American friends), visited 2 sides of the family, over 40 different people and 5 dogs and 2 lakes (Orr Lake and Kushog Lake).


Nickolas enjoyed exploring things – he has gotten so much more interested in the things that are around him. He searches and grabs and just wants to see and do everything. His favourite thing is to be held by someone – doesn’t matter who - and watch the leaves.


 
And of course he shows off how he can sit by himself now – just a couple tips now and then. And rolling over – he is starting to get the hang of it, and know what it is used for. Pretty much as a means to get places – we are not there yet – but hopefully soon!
 
Katheryn enjoys being by the water, even when she has to wear her life jacket. Orr Lake is very shallow and perfect for little girls to run around and splash in. Kushog Lake is quite deep – the water level is actually higher than usual, perfect for adults who want to swim, not so good for little girls who have no fear of the water.


Considering the number of drowning deaths in Ontario and Canada since the beginning of the summer – we are very anxious that Katheryn wear her life jacket whenever she is near the water at Kushog. And – surprisingly – she actually put on the life jacket without a fight.