Down Syndrome muttering: Starting solid with Elias #DownSyndrome

 
I was scared to start solid food with Elias. I have heard many parents told me that he can choke because of his muscle tone, plus he cannot sit yet. So I waited until he is 7 months old.

His first meal, I tried banana because that was what we had. After that I introduced him pears. I had been giving him only those 2 fruits for not long then it started.

Elias was in such a big trouble when he wants to do number 2. He was in pain and cried every time. His dietician recommended me to give him some prune juice about a tbs or 2 which I did but it didn't work. He was still in such a great pain.

One of my friend who has a 2 years old DS boy recommended me to try NutraCleanse. I haven't had a chance to get it yet.

My sister-in-law babysat him last week and gave him a whole jar of prune baby food. I didn't expect him to be able to eat that much but it WORKED! It was such a relief.

I talked to his pediatrician. She recommended me to try giving him different type of food. I have to try to find what works what is not with him. We want to hold back any type of medicine as much as we can. I will definitely use prune. It only thing that I am worrying is he has to eat quite a bit to be able to go. That means, I cannot give him anything else to eat.

So far, I found that if he has 1 jar a day, it seems to be ok. The other 2 meals, I can try to give him something else.

I hope this will fade away and he will be able to go easily. I know that constipated can be part of being a Down Syndrome symptom. Hopefully he won't have it forever.

Elias after 2 months of his heart surgery #DownSyndrome

It has been about 2 months since Elias' surgery. He is getting stronger and stronger every week. We have been visited by physio therapist  every 2 weeks. Every time she came to visit, she will see that Elias is improving a lot.

Even though he is 6 months right now, but his development is at about 3 months old baby. About 2 -3 weeks after the surgery, Elias started to lift up his head while he is on his tummy. We were super excited to see that, a lot of cheers and noises for him.

The next 2 weeks, he can lift up his head even higher and longer. And right now, every time I put him on his tummy, he will just lift up his head to look around. This is amazing!

Because if the surgery, we can't pick him up under his arms. It is very difficult and awkward to pick him up. Just this last week, I still have to scoop him up but I can tell, he is stronger. It is easier to pick him up even though, I still have to scoop him.

We are trying to teach him to sit at this moment. I usually will put him in front of me and have toys in front of him. Our physio therapist recommended us to try to put both of his hands on his legs and press on them so that he might learn that he can rest and use his arms to help him to sit. Just yesterday, I think he can do it for a few second now! Woohooo!! Today, I tried again and I think he can sit by himself a bit longer than yesterday. His balance still not really good though. He swing to the left and right when he is sitting. ha ha ha.

Elias' #heart surgery #Down Syndrome

I have been busy in the last 2 weeks. Today, I actually feel like do nothing at all. I am so tired even though I didn't run a marathon.

Elias went for his heart surgery on July 30th, 2014. We were fortunate to be able to stay at the new Ronald McDonald house in Vancouver. We went in to Vancouver on July 29th, a day before his surgery. His appointment is at 7.30 in the morning. Somebody recommended us to go in a day before because it is very early in the morning. We are glad, we did that.

 

Elias was sleeping on that morning of the surgery. We have to wake him up and walk to the hospital.

We went to surgery daycare clinic for our appointment. Wait there for about 30 minutes until they called Elias' name. One of the nurse came and gave him some type of drug that make him fell asleep within 10 minutes. This drug put him to sleep so that they can give him IV and insert Anesthesia for him.

I am glad that the nurse took him from the bed instead of I handing him over to the nurses and doctors. They gave us pager so that they can contact us when the surgery is done or if they want us to go in immediately.

 

Gotta love how big this is. ha ha ha

They asked of we want to stay at the waiting room and they will keep us inform through out the process but we think we will get crazy so we chose to go out instead.

We went out after that, trying to keep ourselves busy. I was hoping that we will be able to see some booths on English Bay for fireworks. We took Sky Train to Burrard street and walked from there. I found out that the booths don't set up before noon. We left there around 1 pm and some booths just started the set up.

It was quite a walk on that day. We were so tired but good work out for both of us.
 
Around 11.45 am, they paged us. We are not sure how to use it and ended up page ourselves. (Our brainless day. We call the number on our pager and paged ourselves.) We called in to the hospital and finally got a hold of the surgery nurse that told us that we probably just paged ourselves.

We got the news that the surgery went really well. Elias got moved to ICU after that.

We came back around 2.30 pm and went in to ICU to see Elias. He had a lot of wires and machine hooked up with him. He is on temporary pace maker to help his heart to beat normal.

We got to talk to Dr. Campbell about 5 pm. He said that Elias' heart had bigger holes than he thought. His valve is also now split up into 2 valves but the way his valve was working is a surprise to him too. Dr. Campbell said it worked like parachute shape. From my understanding, the valves should move downwards instead of upwards like what Elias had. This is something that we have to keep an eye on, just to make sure that everything will be ok with him.

Long story short, Elias was in ICU for 6 days. Usually, babies and kids stay in ICU for about 1 or 2-3 days. Elias' heart didn't work properly by itself. Eventually, they tried to set pace maker to the different range and keep trying and decreasing some drugs for him. On the 5th day, they only set his pace maker just for the back up and let his heart work by itself.

He made it! What a relief....whew...he got moved upstairs on day 7th. I have to confess that I am glad we stayed there only 1 night! The room, specially the bed was horrible. One of the nurse recommended me to put mattress on the floor instead. It was that bad. (Specially after we were spoiled by the very nice and comfortable from staying at Ronald McDonald house.)

Here are some pictures from the new RMDH Vancouver.

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.