Monday, January 6, 2014

Happy New Year!

I hope this new year brings more happiness, great health to you, your family, especially to your little ones. As my grandma always said, "To be healthy, is to be rich".


So many photos to post, updates to tell, all will come when this crazy schedule subsides.

Prosperous New Year to you all!
Bertuzzi Family

Wednesday, August 21, 2013

Japanese Festival

Last Sunday, we went to the Japanese Omatsuri Festival.
It was everyone's first time to attend (except for me) and I'm glad my family enjoyed it. Next year, I'll let everyone wear Yukata & Jinbei for sure!

Posing beside a Mikoshi


Every time we go out with Isabella, I always sense/get a mixture of people's reaction towards her/us. To be honest, I really don't care and I don't really mind if they ask me questions. I think asking is better than judging. In the beginning, I always feel obliged to explain why she looks like she's 6 mos younger than her age or why she doesn't have any teeth yet. Then, I feel the need to explain even further. Sometimes, I still explain. Sometimes, I just go in agreement that she is indeed tiny for her age.

(Daddy's girl)


People getting ready to dance the Bon Odori


If you haven't been in one, I encourage you to attend. It's not a by invitation only event. Try the foods and try to have a sip of the drink called "Ramune".

'Til next time!

Thursday, August 8, 2013

Fourteen Months Ago

Just seem like yesterday when I was supposed to go to a friend's house for the kids play date. However, I have been showing signs of labour. We've been in and out of the hospital for almost 4 days. Rick has taken a day off for the "just in case". The day before, I told my friend Thienly that maybe I can still go to her place (since she lives nearer to the hospital than me so it's probably easier to drive myself there) - who am I kidding? Ha!

Now, I have this sweet "mama's girl" - oh yes, she is! I still can't believe it! I finally have a baby girl that I have secretly been wishing for. She doesn't have any tooth yet but she's crawling, babbling, pulling herself up and yes, even getting in trouble too! :) I have learned to embrace the delay, learned to wait as she will get there, eventually. I enjoy that moments and is thankful that somehow, her seeming like a baby still at this stage feels like making up for the times we lost while she was in the hospital. I get to enjoy her as a baby longer, probably not much longer. She's getting too mobile! :)

(Bella clapping her hands - yes, that is her proud face saying "Look at me, look what I can do ma!")
The first of this month, also marks a year since she had her open heart surgery. Always very thankful that she survived it & that she no longer need to take any heart-related medication. I still worry about it though - quite often that I probably should have.

She also had her first year vaccination last week. Had to postpone her MMR (Mumps, Measles & Rubella) vaccine because I was told before that she cannot have any "live" vaccine for a certain period of time after her heart surgery. After I got the go signal from the hospital, we had it earlier this week. She cannot have the live vaccine it if she is still receiving any blood transfusion or have received BT in the last 10 months (so I've been told).

To embracing the future.
Happy Weekend!





Wednesday, June 19, 2013

Somebody Turned One!

Last June 8, we were so grateful to celebrate this little girl's first birthday with some good friends.
I cooked ribs and chicken wings. And more ribs & chicken wings! Hahaha. Apparently, from what our friends tells me is that I cooked a lot of food. I guess I did. We had to eat leftovers for the whole week, every single day. LOL. I tried to cook it different ways cos we were feeling like gagging just thinking about anything BBQ, ha! :)

Seems only yesterday, when I held this beautiful girl in my arms. Where did the time go?




If I only knew that it would be this joyful to have her as a child, and that we will surpass some of the initial trials,  I wouldn't have worried too much when I was pregnant with her. This little gal has changed me more than I can imagine. She taught me patience, to be accepting and to love without boundaries because that is what she gives me everyday.

I'm really enjoying that she still seem to be a little baby to me.
So far, she has no tooth yet. She weighs around 17 lbs and still fits on an infant car seat.
I guess it is filling up the lost time I've had of her as a baby for the 3 months she spent in the hospital and I'm totally okay with it.

Did you know, that not only there is a delay of tooth eruption for babies with Down Syndrome but the set of teeth that comes out are also irregular? I saw that her 2 upper front teeth seems to be coming out first and I've been told that in some cases, their molars even comes in first.  

Here are some other photos:


I initially thought of renting a bouncer for the kids but since it was raining, I found someone to do face paint with us on Kijiji instead. She also does balloon twist & I think the kids had a great time!



 



'Til next time.
Thank you for visiting!

Tuesday, April 9, 2013

To Say Or Not To Say

Earlier this week, I was re-reading my post last March 16 and to my horror, saw what I had written on the 2nd to the last paragraph! I was surprised that I even said such a thing! I felt bad. I hope I didn't discouraged other moms out there. You know, I have good intentions, really. I want to encourage other moms or make them feel that they are not alone. I want them to know that it doesn't mean their child has a disability, means they can't have happy ending. But it's just that.... sometimes... or most of the times... it doesn't come out the way it's supposed to be, ha!

Speaking of not saying the right things, few weeks ago, I ran into this blog (from another mom whose child also has DS) and read a post of "what and what not to say" to a parent who has Down Syndrome. Honestly, after reading that post, I felt even more confused, and I have a child who has Down Syndrome. Don't get me wrong, I think there are some good pointers there & I understand that when Isabella was still in the hospital with one problem after the other, I got really sensitive. But it's really hard to know what and what not to say & when & when not to say things. I guess it depends on who the person is & how well you know them. Nowadays, I find that you can easily offend someone just by saying "Don't worry about it". They'd think you're assuming that they are worrying (even if they already said they do), or maybe you're comparing things or that you're being too positive that it sounds unrealistic to them.

Sometimes, people will come up to me and say, "You're lucky because you're going to have a happy child". I admit, sometimes it gets to me because we all have our own temperament regardless we have disability or not & I feel it's wrong to assume that because my daughter has Down Syndrome, that she will be a happy child - all the time. It's like saying that all red head people are hot tempered - and no one can get away with it or that I'm a bad driver because I'm Asian (aren't I? haha, joke!). In the end, I try not to be bothered by it because people mean well and as much as it's difficult for the parent, I think it's hard for the people around them too.  As long as I know their motive is good, that's good enough for me!

Yesterday, we finally were able to go to the pool after missing it for 4 or 5 weeks because of Isabella's cold. It was fun & I think Isabella enjoyed it more this time! There were some new faces too & heard some new stories. I hope I can take pictures next time to show you.

Tomorrow, we're going for Isabella's holter. We had her echo and ECG a couple of weeks ago and it seemed good! Now, if she doesn't have any extra heartbeat this time, she's going to be off this particular medication she's into to regulate or slow down her heart rate. Yay!!

 Just sharing these photos I took of the family last couple of weeks.

I feel like my kids all have mischievous faces, even this little girl!
 

See, now it shows her personality, hahaha. She loves pulling hair - and guess who her favourite toy, I mean person is? 

This photo has slightly different color because of different light.
I don't know what it is with boys these days but mine definitely are growing their hair long! 

Having a good time! Aren't you done pulling hair yet, Bella?

While I see a lot of my friends on FB getting busy with losing weight, working out & eating right,
I was also busy chomping on my midnight Kozy Shak snack, baking cookies, cheesecake,
or generously spreading Nutella on my dinner roll, haha! I guess, all my bad eating
habits is starting to pay off! lol.

For Bella, as long as you have a hair, she's good to go! Pulling hair again. 


It's all in the feet! Hahaha. 



It's going to be a busy month - we are moving to a new home! :)
'Til then! Enjoy the little things!

Wednesday, March 20, 2013

RSV Prevention - What Do We Do?

Due to recent family events (my poor 5 week old nephew has one right now), I thought I'd write about RSV prevention on this post instead of the physio video that I promised, sorry.

RSV is still going around, sadly. Isabella had her 5th shot earlier this week & is due for her 6th in 6 weeks. I did a short introduction about RSV on this post. This link may also be useful information. Fortunately, she hasn't gotten RSV, thank God. We are really working hard not to get it and I hope that she nor any baby would ever get sick wit.  h this mean virus.

Here are some prevention method we practice in our family.

  • We do not let her go near anyone who is sick whether it's in the house or in the car unless it is our immediately family (me, my husband, and the 2 boys). If any of us are sick, we minimize contact with her. If I am sick & since I can't minimize my contact with her, I can avoid kissing in the mouth or putting my mouth or nose anywhere near her face but I give her lots of hugs instead.
  • If we are having visitors over, we tell them to inform us ahead of time if they are unwell or we re-schedule any appointments or visits we have with them. 
  • Per nurses advise, we try to avoid car rides with others to minimize any risk since RSV can also be spread through droplets. 
  • I wash all her toys, sheets, blankets, jackets, sweaters, gym mat at least once a week. If it drops on the floor in a mall or supermarket, there is no way I will wipe that toy & give it to her. It'll have to go in the washer or has to be properly sanitized first. 
  • If we get sick including the boys, I change bed sheets once they start to feel better (regardless if I just changed it). Along with it, I sanitize very important germ-magnet places/things that we unconsciously touch all the time such as door knobs, side of the door, bathroom counters, faucets, sinks, stairs railing, TV remote, computer keyboards, mouse & more. 
  • I always carry a hand sanitizer with me, 100% of the time. When I'm at a mall or supermarket (where people touch almost everything, esp in the produce section!), I sanitize after every time I touch anything, esp before I touch Isabella or any object/food I will give to her (if she's with me at the store). My hand may be as hard and dry as concrete right now but hey, if it'll keep my baby safe & healthy, it'll do for now! :) 
  • We try not to bring her too often to public, crowded places. I still go to the mall with her. Sometimes, I think she needs to be out there too and so do I (mine is not about sanitize issue but sanity issue! LOL!) so I just make sure that I always wash or sanitize my hands. 
  • When I bring her to the hospital for appointments, therapies, I always make sure that her car seat & stroller canopy are covering her (to avoid people from peeking & breathing on her or touching her) and to avoid any virus/bacteria that are transferable by droplets (like RSV). 
  • I make sure that I cover her bottle brush in the kitchen to avoid contamination with any meat or any type of bacteria that can be found in kitchen. I also dry her bottles in a separate tray and not in the kitchen counter. 
  • We ask anyone who holds her to either wash their hands or sanitize it. Most of the time, family & friends have been really good about this that I don't even have to ask them! 
  • Most importantly - Hand washing - we all do this religiously! 
So you may ask - which one is worse, RSV or Pneumonia? 
Based on personal research, RSV can lead to Pneumonia. Although you can get RSV Prevention by having Palivizumab shots, you cannot treat it with antibiotics (unless there is a complication, ex. ear infection) like you can do with pneumonia. 

I hope this little bit of information helps. 

Here's to hoping you & your family get RSV free and prayers to my nephew for his speedy recovery. 

Saturday, March 16, 2013

Box Full of Chocolates

One fast month have gone by. Isn't it scary that time seems to go by quicker these days?

I am not always the type to bring my children to baby class or a baby group when they were little. I just didn't feel the need or find valuable reason to bring them to one. Even after Isabella was born, sometimes, the staff at the Child Development Centre would ask if I would like to stay for the baby group. I've always politely turn down that offer. Maybe I'm afraid that she may get sick or catch someone's cold by mingling in baby groups.

3 weeks ago, it changed me.
We were at the Children's Hospital.There was a nice warm salt pool where many children benefit from having water therapy and it was Isabella's first time. We were worried about her SVT (Supra Ventricular Tachycardia). I'm not quite sure how her heart rate would be in water because of the pressure. However, after a go signal we got from Cardiology, away we went. Isabella always loved the water but she was quite hesitant and worried when we were in the pool. I waited for her cue. She didn't cry (almost did) so we stayed in the water. She held on to my hair mostly for the whole 45 minutes (which was fine it that made her feel better). She started feeling a bit more comfortable towards the end and I was happy.

There were at least a dozen other mom/babies that was in that group - all babies (I assume) if not, most have Down Syndrome. I didn't get a chance to say hi or talk to everyone. Few more came by for the later class & they were the toddlers. Suddenly, I felt like we belong and it was a wonderful feeling. They all have beautiful babies.

Unfortunately, Isabella has already missed 2 sessions due to a nasty cold. I had to rush her to the hospital too last week due to it and some weird eye reaction to antibiotics (Garamycin) which the ER Doctor asked us to stop using.

So far, I have been diligently sucking her snot (excuse me for my lingo!) using this NoseFrida SnotSucker. I really recommend this product. I've tried different nasal aspirator for both boys and I wish I discovered this when my boys were little.

I'm really looking forward to for her to attend the water therapy again this Monday.

NoseFrida the Snotsucker!

Last week, this little girl turned 9 months. Wow!

9 months and 5 days - love her to bits

Although, it still wouldn't have changed our decision to keep her - I admit, when she was going through some really rough time - asking myself if we made the right decision to keep her & have her experience this suffering came to mind. I remember my husband telling me at that time that if she passes on because of so much health complications, it will be painful but he'd accept it rather than opting for an easy way out because we could have had a child without Down Syndrome and may be faced with the same situation.

I hope every parent with disability or any medical/mental condition can come to term that there is no guarantee. Like Forrest Gump says "Life is like a box full of chocolates, you'll never know what you're gonna get". We could all give birth to a perfect healthy baby and I do not wish it for any parent but we could still have problems later on. We had a rough start and more challenges is yet to come, maybe some will be lighter, some may be hard but no one is spared of it. We all have different cross to carry. We are never alone.

On my next post, I'll add some photos/videos as to how I do physio therapy with her at home. We also recently started a massage therapy. I'll have to ask permission from the child development specialist if I could post her writings/guidelines in my blog to help other parents who can make use of this therapy.

In the meantime, have a beautiful weekend!

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