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!

Monday, January 31, 2011

No Day like a Snow Day

So I'm a bit late posting this. This was our weekend a week ago, when we decided that we had stayed in the house too long, and would go out and play in the snow. It had finally warmed up to a -5C.  So we headed off to play with cousin Madison!
Nick was less than impressed with being all bundled up in the snow.


The original plan was to go sledding, but the kids are still a little young for some hills. So we just pulled the kids around the backyard.


I got this perfect sled for Nick that has nice high sides, and a seatbelt. And because we've lost his snow pants, he is piled high with 3 blankets, 2 pairs of pants and lined splash pants. I think he has on Katheryn's pink, red and purple gloves, and the hat he hates,



We were outside, with the snow coming down. And Nick decided he had had enough, and the adults decided to agree with him! Katheryn isn't that happy anymore - but Madison (my niece) is still having a blast and hamming it up for the camera!
Now that everyone is all rosy cheeked and rosy nosed we headed inside to run around. Nick has decided to all of a sudden become a picky eater, boycotting any type of fruit or vegetable that isn't banana's decided that the plastic pineapple was still ok to chew on!


Don't know if I'm just asking for trouble writing about a snow day 24 hours before we are getting a snow storm.

Saturday, January 22, 2011

We need to talk...

OK we really need to talk about some things. Trust is very important aspect of our relationship and I really feel that you have failed in that department. It is something that we both have to work on and I'm not sure if I'll be really happy until we reach that point in our relationship again.

First of all Kyle and I are great, so are the kids. So who am I 'talking' to? The shunt.

Don't call the men in the white coats to come and take me away... hee hee ha ha ... yet.
My other SB moms know what I'm talking about (I hope).

I feel a bit like I need to get over this. In the range of things that could happen (and will happen) a shunt revision is a walk in the park. (OK Maybe if that park is Regent Park at midnight!) But it just seems to have shaken me and what I thought I knew.

It was one thing I thought I had a handle on, one thing that I knew was there, but didn't really care. It was working, we'd had our year anniversary, we could breathe a little better. Hey I was even measuring his head only once a month! Now we are back to every day.

I guess I am just being naive that it's something I didn't have to worry about. Just one more thing I can stick my head in the sand about. Wow I'm full of metaphors today...
I am back to that gibbering mess where every little cry or sleep has me thinking SHUNT! OK I might be a little hard on myself here. But that is certainly what it is feeling like now. I feel like every day I'm thinking how spina bifida sucks, all my posts have been complaining and negative. Where is the positive?! Where is the hope and dream and this is not that bad! I guess it's there somewhere.

(FYI I put him there - he's not in the pulling up stage yet)

And I'm just not sure how to get past this. I guess time will tell. But what will happen in another 13 months? what will happen in 2 years (apparently the average age of a shunt)? Is there ever a time I can stop worrying about the shunt?! Worry about when it is going to fail us again. Stop trusting it!

So in honor of promoting a trusting relationship I am thinking of names. No I am not crazy. Men can name their ... um ... peter's (or at least tv says they can). So why can't I name Nick's shunt?
Except I am totally overthinking this! I have a couple of names in my head, but not 100% sure on them. It's not like it's something I have to imagine myself yelling "X time for dinner!"
What I've been thinking - considering this is shunt #2, is some B names. But I'm pretty boring, so I have Bob, Bert and Brian. I can totally imagine myself saying/thinking "Oh that Bert, is he acting up again?"
I'll say it again. I'm not crazy.

Thursday, January 20, 2011

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)

Wednesday, January 19, 2011

Oh No! Bath Time!

I have a bit of a confession. Nick hates his bath, he usually cries the whole time and so I am usually rushing through everything as he cries away. But he has to be clean. So as I'm trying to wash his hair and wash all the shampoo out - trying to keep it out of his eyes - he is really not a happy camper.
Katheryn on the other hand LOVES her bath, she would live in the bath tub if she could! Even when the water is cold, I still have to drag her out of the tub.

Today I tried something different. I actually wanted some bath tub pictures for a photo book I'm doing for Nick to look at. So today was a more relaxed environment. No hair washing, just water, bubbles, toys and fun.


As usual Katheryn loves making him laugh. Splashing and kicking and giving him toys. He really didn't like getting water kicked in the face - who does?!


But after a couple of tears and encouragement that no, he really was fine.

He cheered up!


And surprise, surprise, Nick started to really enjoy his bath. He played with toys and watched what Katheryn did. And I got smiles and laughs. Something that I am still watching (is he back to normal - did he smile/laugh more or less before).


So hopefully we are in a new age for bath time. I remember that Katheryn went through the same phase of hating her bath. So hopefully he is entering his bathtime-isn't-that-bad phase.
Because bathtime that looks like this is really fun!


And afterwards some warming up with Pooh (ok that just sounds wrong). Winnie the Pooh - actually I think it's a tigger robe.


 And then bundled up in a tracksuit and play with his toy in front of a warm fire.


Does it get any better than this?!

Monday, January 17, 2011

Back to Normal

Nickolas is completely back to normal. He is happy, he is playing. He is actually happier than he's been in a long time. More aware and more bright eyed. And I didn't notice anything when it happened.





He is eating up a storm again - but has started to be a bit picky with his foods. He refuses the breakfast I have been giving him for the last month or so, and won't just eat whatever is in front of him. I (grudgingly) suppose this is him getting older and developing his own tastes. But it was really nice that he would eat whatever I put in front of him.

We have also been able to get him up in his stander and do more physio again - another area I feel I'm failing him at! During December when we were all sick for 2 weeks he didn't go in it, and the week he was in the hospital and until he was back to normal we kept the stander in the corner.
(So he is in his stander in this picture - I just put his shirt over the frame because he was cold)

Now it's time to get moving again - literally.


Oh yeah.. There is my little boy! What a clown!!!

Sunday, January 16, 2011

It's hard being a mom

It's hard being a mom.

It is hard being the mom that is supposed to realize when things are wrong.
It is hard being the mom who is supposed to identify when certain behavior is just recovering from surgery, a shunt malfunction, teething, getting older or whatever. That is asking alot of a mom.

When symptoms of a shunt malfunction are irritability, poor feeding and not as awake as usual and you just got home from shunt surgery and your child wants to be held all the time, not eating as much as usual and cries when you put him down. Is this something to call the doctor and rush back in for, or is it something that is normal for your child to do after spending 4 days in the hospital and now has a big incision in his head!

And I'm the one who is supposed to know what to do.

It can be very stressful at times.

Especially when Nickolas didn't show any of the classic signs that I knew that I was supposed to look for. Yes Nick was irritable for a couple of hours on the Sunday evening/Monday morning - but he calmed down and went to sleep fine. If it was shunt shouldn't it have continued? Did I miss this?!

Yes he had a fever once on the Tuesday afternoon, but no other symptoms. If it was a shunt the tylenol shouldn't have done anything. Did I miss this?!

Yes he had swelling at the shunt. Yes this is a symptoms - but it was the only symptom! And it would get better, he wasn't acting any differently, fontanel felt fine. Should I have jumped at this one earlier?!


I guess in the end things worked out. It just has me second guessing what I thought that I knew. It has me really hoping he doesn't get a fever with teething or a cold because I might be inclined to bundle us all in the car and drive to sick kids (about 60-90 min away) because he is teething.

Because I just don't know anymore! I feel absolutely clueless!

And I hate feeling that way!

I actually divided up this post into 2 - the happier part of it is next

Tuesday, January 11, 2011

Inspiration

Because some days Spina Bifida just sucks, I decided that it is time to share a poem that my friend Joanna wrote last year.
Get the kleenex ready...

For Jet

Most every day I feel so thankful for the life we live,

The many blessings we enjoy - the chance we have to give,

The sweetest little miracle with mischief in his eyes,

The lessons he has taught us have come as a surprise.

And yet this source of endless love - our sunshine in the rain!

This precious gift of joy - can also bring me the most pain.



It's a whirlwind of emotions when I look at his sweet face,

The beauty of his life - a perfect portrait of God's grace.

But paired with that - the struggles of the future we've been shown,

The worries and the fear that come with so much still unknown.

It's easy to stay positive when hard times pass him by...

But I know that there will be a day when he asks"Mommy, why?"

"Why?" to certain things that let him know he's not the same,

The medicines he hates or why he cannot join the game.



And then sometimes I think "if I could only know for sure..."

Or "maybe that won't happen..." Or "maybe they'll find a cure..."

But Maybe is a dangerous game that goes two ways when played...

And inevitably you find yourself in the "maybe-worst-case" game.

And that game makes things dark enough for doubt to creep inside,

And even in an empty room you'll feel the need to hide,

The sunshine is long gone and it has now begun to rain,

And a growing sense of helplessness brings out forgotten pain,



There's nothing left in your control

or if there is it's slipping,

There is fear of losing everything

you've been so tightly gripping,

Like waves crashing over you

you fight the urge to fall

You gasp for air that isn't there -

You feel no strength at all.

Lost, confused, angry, desperate

Reaching for a hand,

Something to hold on to as you fight to try and stand.



Then suddenly you feel you're being lifted from the deep,

You're standing at the top of what at one point seemed too steep.

What seemed to last forever, in a moment now has passed,

What came on unexpectedly, is over just as fast.

A peace grows into hope as you embrace the help you've found,

Then hope gives way to joy as Love and light shine all around.

Instead of drowning in the waves, you're standing on the shore,

The doubts that once had pulled you down aren't with you anymore.



What happened to the overwhelming loneliness and fear?

Were they never real? Could they just simply disappear?

No - they're just as real...and just as strong as they were then,

They can return at any moment should I choose to let them in.

Never - I may say - I'll never let in fear and doubt.

But everyone has days where they're just too hard to keep out.



So if you find yourself in waters just too deep to swim,

Nights too dark to find your path,

Fights too tough to win,

Instead of holding on so tight and sinking 'neath the weight,

Give up control you think you have

and trade your fear for faith.


Written by Joanna Penny ~ For Jet ~



Don't say I didn't warn you!
 
If you can still see, take at look at this little guy! Yup my Nickolas is back!
 

Monday, January 10, 2011

It's just hair...

Because I have always known that another surgery is inevitable, I have considered what I would do with Nickolas' hair when that happens. I know that in the scheme of things hair is really no big deal. In the range of things to be worried about, or think about hair, should be pretty low on the list.
But at the same time it gives me something to do.

I took off Nick's bandage today and I knew I had to do something. His scar, while over the old scar, is bigger, and he has a large bald spot now on his temple. The incision actually looks better than a year ago, nice little sutures instead of that dark marker and glue.


This was a year ago - at New Years, and his shunt was almost a month old. I didn't really take any pictures of it then, I tried covering it up mostly and it took a while for me to look at it without cringing inside.

But I'm glad that Nickolas already had his first haircut and that this wasn't it.
The first time Nick's haircut made him look older. This time I think it makes him look younger.

My original plan had always been to shave his head, take away from the bald spot by just taking all the hair! Then I noticed that Nick plays with his hair when he sicks his thumb. Well, I wasn't about to take away this coping mechanism just because I felt like it.

Then I noticed that Nick really didn't want anyone to touch his head. So any type of shavers were right out of the question. It was back to the old hand-held scissors and as short as I could make it.

I went to this task with a heavy heart. While I had thought about what I would do, I really didn't want to give him any kind of hair cut. We had already done this! It was fun, this was not.

First came Nick's first bath to try to get the blood and pink dye off of him. Alot easier said than done! The soap and water didn't do a single thing to get rid of any of the pink or red! Maybe if I scrubbed, but Nick was not having any of that!

So I just started cutting, one side of his head was completely matted and just a complete mess.


This was about half way. I had finished most of the good side and had to figure out what to do about the other side. If I was trying to make him look and feel better i couldn't leave that side.


I finally got the bright idea to try the Re-move stuff to get rid of adhesive tape. This worked very, very well. Unfortunately I only got one little pad and will need more. But for now I have a finished product:


I guess it just has to be a work in progress.
And it's just hair.

Sunday, January 9, 2011

Home!

We got the 'GO' to be discharged home! So then Kyle and Katheryn came to pick us up! Katheryn hadn't visited at all and was asking about us all the time!
I stayed the whole stay and I didn't want Katheryn to come to the hospital and have to leave without us. Also we were in the observation room until the last couple of hours of our stay - so we had a little corner with the crib, a table and an oversized chair. And so did the other 3 kids in the room. It was for kids who needed that extra level of care, so there were always 2 nurses in the room too.
I think that Nickolas missed her too!


There were lots of kisses and hugs (Nick wasn't THAT excited) but she got him laughing - something we hadn't heard for a couple of days!


She's telling him about everything  he's missed at home!


And trying to make him laugh!



We got our discharge papers, packed the car (how did we collect so many bags in just a couple of days) and were on our way home!
One question they kept asking - is he back to his normal self? Well... not really, and that is the question that drove me crazy, I did want to go home, but he was more tired than normal, more cranky than normal. But he finally had something to eat (and kept it down). He was only 36 hours after anesthetic, and had just had BRAIN SURGERY!!! Who wouldn't be cranky and tired after that. Oh yeah and 72 hours in the hospital being woken up every couple of hours, poken and prodded.
How is he supposed to be back to his normal stuff! What if I say yes, and we get home and need to come back? But they seemed to be satisfied with my answers and what they saw.

After an ok night (Nick threw up his milk once we got home and didn't eat much for dinner). Oh oh, is this a symptom, is this an upset stomach, do we call, do we wait?! I think milk was just a little heavy for him.

Nick was more bright-eyed and ate breakfast and his milk. Still very, very cuddly but his old stuff was starting to emerge. And I got a couple of posts off to ask opinions of other moms.


It's so hard when I'm the one who is supposed to know everything. And to watch out for symptoms that may or may not be there, may have an alternate explanation or be the thing you are supposed to be looking for. AND from our experience the symptoms for the revision and the UTI were not the ones that I was originally told to look for!

I was very happy when Nick wanted to start playing. Yup there is my boy!

Saturday, January 8, 2011

After surgery

Here is Nick in the recovery room. I am sure the nurses thought I was crazy when I pulled out my camera (I know Kyle does). But it took a while for him to wake up. At first he would open his eyes a bit of a flutter when I called his name. But he was just really out of it.
We were in the recovery for over 2 hours, letting him sleep, watching him sleep, touching him, praying for him, thankful for him.


Something that really gave me a kick and made me laugh... Pink highlights! Yeah Nick got his first dye job! Looks like something I tried to do when I was 15!


The next morning Nick was allowed to have something to drink. After trying different sippy cups (we didn't bring the ones that he liked) I decided to give him his milk in a bottle. I think this is the first bottle Nick has had (we went straight from breast to sippy cup). He thought it was great and kept moving it around in his mouth - no hands!


He wasn't really bright eyed until about 4pm Saturday afternoon. Right around the time Kyle came to visit. I gave him a cookie and he just devoured it!!! Look how bright eyed he is!


When Nick gets tired he sucks his thumb in one hand, and twiddles his hair with his other hand. Well, his hair is up in the bandage. Boy did he destroy that bandage! he kept tearing it apart. We ended up running tape around the whole thing trying to keep in intact for one more day!

We did order dinner for Nick, but he only ate 2 french fries - probably not the best mommy-idea for the first meal. But he kept what he ate down.

This is breakfast the next morning. Nick did make an effort to eat, but he really only ate about 1/2 of this hashbrown. One of his favorite  foods. Not the appetite that he usually has. I guess just time will tell. But his appetite has to be back before we can be discharged.

Katheryn did not visit (I didn't want her to) but we did bring a picture for Nickolas to look at. he liked looking and touching the picture.


We moved to another room and were able to get some more mommy cuddles in a nice quiet room. And had some sleep at the same time.


After some quiet time, some rest and some tylenol we decided to try again for a meal. Something light and something he'll like. Yogurt and PB&J.


Success! He INHALED a giant thing of yogurt - he kept chasing the spoon - a very good sign. And then just tore apart his sandwich himself!

So it was a GO FOR DISCHARGE!!!!

I got so much support for everyone on facebook, and my blog and my family and friends through blackberry (yes we are totally plugged in), and of course people we actually talked to in person. It was very nice reading comments and knowing that there were so many people thinking and praying for us. People who had been there, done that and knew how hard it is.
At such a tough time, just a couple of words really helped.

Friday, January 7, 2011

It's working!!!

Nick's shunt surgery was very successful yesterday. I am on the computer on the unit right now - so no pictures.
They were able to just fix the proximal part of the shunt (the shunt on his head) and the distal part (the part going into his belly) was fine and they didn't need to change anything. The surgeon was very happy with the results. Nickolas was in the OR for about 1 1/2 hours, but then was a little slow waking up from the anesthetic, so we didn't get back to our floor until midnight (we left a shift change - 7pm for the surgery).
Last night I was able to get a little bit of sleep, again in the chair next to the bed. We are staying in the observation room, not quite sure why, I think staffing or room issues, not Nickolas issues. The nurses are super nice, so we are fine with that.

Nickolas slept all last night - very, very soundly. A little too soundly for my taste but I think it was the last 2 days catching up to him, and the anesthetic wearing off. Today when he wasn't sleeping he was busy being grouchy.
He did get to eat a little bit in the morning, but then he had to be npo (nothing to eat/drink) in case he needed to be sedated for the CT. The cat scan that was supposed to be done around noon. Which turned into 3pm, which turned into 5pm when Nickolas would not settle and sleep. Finally they did it with him fussing and little bit, but they were able to get the shots they needed.
I swear the surgeon almost beat us to the room. To tell us the good news! The shunt is perfectly placed! Yes, he used the word perfect!

So as of this minute Nickolas is busy munching on a cookie, finished his milk and is once again showing his pearly whites off to everyone with his super-duper smiles.

Thank you for EVERYONE for their thoughts and prayers. They really mean alot to me.
I don't know how I've made it through the last couple of days, but I think that when I get home I am laying down in bed and not getting up for ANYTHING for at least a couple of days!

Hopefully tomorrow I will post some pictures so you can see Nick's smiling face for yourself!

Thursday, January 6, 2011

Oh Shunt!

 Feel free to substitute any letter for the ‘un’.

Apparently the 1 year anniversary doesn’t really mean anything. After my last post about our midnight adventures on Sunday night/Monday morning, Nickolas was pretty much back to normal. We kept watching the boggy part on his shunt, but his fontanel was still fine and his behaviour wasn’t all that different.

I was still sure he was teething, but nothing was showing up. I contacted the neurosurgeon by email Monday morning, but didn’t hear anything. No other symptoms so I wasn’t that worried. Really I haven’t checked his shunt site, and it’s all covered with hair now.

So it was back to work for me Monday and Tuesday night, sleeping in the day. Tuesday afternoon when I got up, Nickolas felt very warm to me. So I took his temperature. 40°C (for my American friends that is 104°F). That’s never good! We gave him Tylenol immediately and his fever came right down.

He cheered right up, his caths were still fine. Is this still teething? That is quite high for teething. But he was acting fine, so I didn’t call into work. He was fine staying home with Kyle. At work (where we ran off our feet and didn’t break all night!) I talked to the paediatrician that was on call with us, and she said we should call the neurosurgeon at Sick Kids and go in.

I knew that was what she was going to say, but I also knew that he wasn’t showing any signs of a failure or infection, but swelling at the shunt and fever were on the list. I could not find the neurosurgeon number, and Nickolas was home sleeping soundly.

I got home from work and immediately took Nickolas in the see the paediatrician (we already had an appointment) and surprise, surprise we were told to come in. So off Katheryn went to daycare and Kyle, Nickolas and I loaded into the car on our way into Toronto.

Writing the next day I can’t tell you how many hours we waited. But it was LONG! At first Nickolas was very impressed with this wrist band thing. He kept looking at it, and touching it!



We were in a room pretty quickly, and even saw the neurosurgeon fellow pretty quickly, but she said she was very busy and would be back. So we waited, and waited and waited.

We found out that Nickolas had a UTI – that explains the fever. And it was just waiting for the x-ray and the CT scan and they took blood. They attempted an IV because Nick was npo (nothing to eat or drink) in case they needed to do the shunt that night. Nickolas has really crappy veins. Really really bad. So we waited to see if he actually needed the IV after the first 2 attempts failed.

Nickolas was very hungry and was willing to eat ANYTHING!


But he was still happy.

So after a CT and x-ray they found that Nick’s ventricles were enlarged slightly and that the end of the shunt which is supposed to sit in the ventricles was out of place. So shunt revision here we come!

So not only does he have a UTI, but he also needs to have his shunt fixed! Poor guy! And I’m stubbornly sticking to the story that he is teething as well. Next time I look at 3 different choices of what something could be – I should think of simpler things!

So 3 attempts later we had a satisfactory IV (in the foot) and a potential plan. We were admitted back to 5C – where Nickolas recovered from his MMC repair (the initial surgery to repair his back) and his shunt placement. He remains npo, IV, vitals every 2 hours! Lets just say I had a very grumpy child who went between being very irritable that he was awake and couldn’t eat, and sleepy because he kept getting woken up. We are in observation with 2 other kids and nurses always in the room. I had a comfy rocking chair to try to catch up on my sleep – Only been awake for 36 hours!

Nickolas’ shunt surgery was considered an add-on. So he was probably going to be done at the end of the day unless something changed. But no, he still couldn’t eat. He was also started on an antibiotic for the UTI and the ditropan, but no Restoralax (Miralax) because it had to be mixed with too much water.

I think I’ve been driving the nurses crazy with my obsession about his bowels. An ER nurse told me that on the range of things that I should be worried about, his bowels were on the bottom of the list.

Definitely not said by someone who is a parent of a child with spina bifida.

We had just started winning our current battle with constipation when all of this hit, and I just know that when all is said and done I’m going to be sent home with a child that is going to be sooo constipated!

 
My only hope is that because nothing has gone in, stopping the Restoralax for a couple of days will not be as disastrous as I think it will be.

At the moment it is 6:30 pm on Thursday and we have been waiting for the OR ever since! NPO, vitals and eye checking every 2 hours, cathing every 4 hours (I’ve gotten students to do it all day) and a baby that really hates it when mommy is not at his side. Pretty much where I have been. And running on 50 hours of minimal sleep (I might have gotten about 2 hours in total last evening and night).


Wait! We just got called to the OR. I’m going to find a way to post this from here. And good news for my next post. I think I’m too tired to be worried (that much) and have been very happy with all the love and support I’ve gotten from people who have learned what is going on. I wish we weren’t here – but I’d much rather be here and getting things fixed, than at home wondering!


 
Thoughts and prayers are appreciated and thankful for!