Tuesday, 22 July 2014

Down Syndrome muttering #Down Syndrome

In the first month after Elias was born. I was hard for me to try to go out.
Not just because he has Down Syndrome but also because of shopping with
a new born baby and a toddler right after you gave birth to a baby is still
quite an adjustment.

A lot of people when they see Elias, they will just ask "How old is the baby?",
"Oh, he is so tiny.", "Oh, he is so cute." I found these comments made me feel
better from the fact that he has Down Syndrome. On the other hand, I often
ask myself too that "Do they know that he has Down Syndrome?", "Did they just make those comments just to make me feel better? but honestly they didn't think that he is cute?", 
"Is he really cute?"
"Don't they see the look of Down Syndrome in him?"

There was one time, when I went to the store, Elias was in the car seat and I have a big car seat
cover because it was raining out side. When I came in, I forgot to unzip the cover. (But there is
a big opening on top of the car seat.) There came a lady, asked me if there is a baby inside.
I was expected to hear the common comment from her like, "Awww....cute baby".
But instead, she just  looked at me like I am a horrible mother, and told me to unzip it because he might not be able to breath. Seriously, that car seat cover was designed for a baby and there is enough air flow for him.
Then she left and I kept walking but started to cry. I probably wouldn't feel this bad if he doesn't
have Down Syndrome. It was like a double slap on my face. It might sounds silly but I was (and maybe still emotionally very sensitive.)

Until to day, Elias is almost 4 months old. My grieve still comes and goes but I think I can handle
it better. I discovered the way to use Down Syndrome card to get away from someone that I don't want to talk to.
After our kids were born, we got many phone calls from private company about
RESP for our children. When it comes to Elias, I just have to tell them that he has Down Syndrome.
That's it. From my experience, all of them just don't know what to do after I told them that.
They just say sorry and walked away or hung up the phone quick.

 I can cope with Elias and his Down Syndrome better than day one. By telling people that he has Down Syndrome doesn't hurt me as much as before.
In fact, I am excited to see what his future will be like!

Monday, 21 July 2014

Walk for Down Syndrome #wordless Wednesday with linky

A picture of my son and our friends' daughter on walk for Down Syndrome day in Abbotsford.

Friday, 18 July 2014

Hospital visit again #Down Syndrome

Elias has been in the hospital for 5 days in the last week.
I am glad that it is not because he is sick.
Even though, it started because he is sick
that is why he couldn't eat enough. He was too tired.

Right now the doctor is monitoring him to make sure that he is gaining his weight. He did good
on the second day. He gained about 100 gram which is really good! But on the next day, he lost
pretty much all of it which cause us to stay here a little longer. In the last 2 days, our doctor
happy with what he gained. Elias gained about 45 gram a day.

We are on the feeding plan now. I have to feed him every 3 hours. I really want him to stay on my
milk only. Personally, I don't want him to drink formula but we have to add some formula in my milk to help Elias to gain weight. Our doctor still have me pump my milk
every 3 hours. I still breast feed him but have to alter with bottle feed him every 3 hours.
He still drink my milk from the bottle but have to fortify with 1 and a half tea spoon of formula
for every 58 ml of my milk.

His weight at this age, he should be taking a minimum 70 ml bottle at a time. They prefer him to take
85 ml but we have been trying for the last few days, doesn't seem like he can make it 85 ml
at a time.

By fortify my milk with formula will help him to gain more calories by drinking at the same amount
of my milk. This help him to be able to gain weight easier for him to get him ready for the surgery
that is coming on July 30th. So far he is doing ok.

I have to say though that the doctor and nurses here in Abbotsford hospital are really nice.
Elias got a very good pediatrician that really care about him. He loves her as well. I can tell
by every morning when she came, he looks very happy and try to talk to her.

Most of the nurses here as well, they are so nice, kind and helpful. I feel that we are in good
hands here. They make a hospital stay enjoyable! Thank you so much.


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