The Journey

Aaron was born 36wks 5days after a relatively normal pregnancy.. nothing out of the ordinary except the pains and aches. He was born on my birthday. My best birthday present.

The hours that followed the birth was not fantastic… 4 hours after delivery, I started to feel an intense pain (most probably also because my magical epidural is gone) and it became so intense that my breathing was shallow and i was trying to explain my pain but the nurse thought I was being drama. Oh well.. long story short.. it turned out there was a hematoma (don’t google it, its gross) and I had to undergo an emergency operation the next morning. The next few days was kind of a blur.. ranging from issues latching (which now I know why) to very low iron levels.. to the PD mentioning the words “floppy baby” and “low set ears” which didn’t ring any bells to me at that time of pain.

After we brought Aaron home, he was a joy. He seldom fussed, he was a good sleepy baby. The only problem we had was his jaundice which was labelled as “breast milk jaundice” therefore, I became a cow hooked on a machine and he was formula fed. Me being me, I strongly believe in “Fed is Best” so that didn’t upset me much.

Months passed… he was always a joy.. we didn’t think he was different or anything… However, during CNY, we brought him out for some visiting and people kept commenting that his head was flat and we needed to put him in a yaolan and rub his head to make it round. Obviously, not only 1 person said it to me.. even the restaurant middle aged waitress came up to me and commented on his head shape. That made me very annoyed. So at our next vaccination, we mentioned it to the PD and he too noticed the “flatness” and recommended us to Orthopedia to get an assessment done.. fast forward a bit.. he has asymmetry and plagiocephaly  he did helmet therapy and all is good now. Will do a separate post on helmet therapy in future. At 4 months old, we started him on some fruits.. and I was waiting for him to flip so that I can video it with his milestone cards that I bought but I keep forgetting about it.

4 month old… 5 month old… and then 6 month old… nothing happened. He was on the helmet, so we wondered if the weight of the helmet was the cause of his delay in flipping over. I had many concerns and the PD brushed if off to say that to give it time, some babies flip later… This is where i would like to mention that I really dislike it when people do not acknowledge my concerns and brush me off. I know something is wrong. But I just don’t know where to start my witch hunt. Even if I wanted to google or webMD, I would need to know what i want to find. With very little support and knowledge, all I can do is wait.

So, one day when we had a helmet appointment.. Aaron was about 6 months by then, and he still hasn’t flipped or sit or reached out to grab anything etc… I spoke to Suzanna (the orthotist from orthopedia) and she recommended me to see Dr Janice Wong from Thomson Medical. So I made and appointment and saw her a few days later.

That was went I first heard the words hypotonia, global developmental delay (GDD), low tone, syndrome, low set ears, droopy eyes, extremely fair skin. That’s a lot to google. And that was when my concerns were finally acknowledged and someone, knows what I am saying and is helping me instead of brushing me aside saying things like, give him time, he is ok, he will be fine. Ok~ he probably will be fine… but he will have struggles.. we will have struggles.

Only at the 2nd appointment with Dr Janice Wong when Aaron was 10 months, we heard the term Angelman Syndrome.

Its been a lot to take in. Some days, it looks bleak. Some days I find strength and hope. The purpose of this blog is to really journal his process, share my thoughts, voice my fears and worries. Which sometimes, even the closest and dearest think i’m just being my crazy self of over analyzing, over thinking and over reacting.

I want to know what is wrong with Aaron. I want to help him. I want to lift him up to God. I want to trust what God has planned out for him (and us). But now, i’m grieving. Asking why. Why Aaron.

Please keep Aaron in your prayers. Maybe God will grant him a miracle because he is too lovely to have to suffer and struggle thru life..

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