First 3 months of his life

I am thankful for my husband. He is super supportive. He never complained that he had to take care of a son like Mathias. I know there are men out there who would have deserted their wives should this have happened or would rather not have bothered at all. Here he is feeding Mathias. Of course this picture was taken when we had no idea what was about to happen. But even then, he made sure that he was there for Mathias. Many a times, he will be the one to tell me to let it go. Ignore whatever thats making me vexed. Especially when we brought Mathias out with his feeding tube. He never once said, lets not do it cause people are staring. Thank you hubby for being there and being strong for both of us.

Here's Mathias with his stubborn and angry expression. He hated taking off his clothes. Hahaha. I think its cause of the doctors and nurses who kept stripping him to take a look at him. Whenever he had an appointment with his doctors, the first thing they do is take his clothes off to check him. Mathias came to dislike all the probing and checking. Hehe..... Look at that pissed off face!

He hated bathing too. After every bath, he looks like that. Boo hoo hoo.......... he is my very own grouchy baby!!!!

But he looks like an angel while he is sleeping. I loved to stare at him sleep. He is all peace at that moment and he looks so sweet. Such a cutie pie!

When awake, he will have tons of facial expressions. Its comical to watch him. I love his smiles the most at that point and the little sounds he makes especially after milk. He is a jovial and talkative boy. He would chuckle and laugh when I sit next to him. Those are special memories to me now. After he lost his ability to laugh and smile at will, I treasured those memories and moments when he suddenly smiled at us or laughed. It was super difficult to get those on camera. But we tried anyway.

Another one of Mathias hated things, was the exercises that I put him through each day. As mentioned before, he had tons of appointments with doctors which included therapists too. One of those were for his neck. He had tons of neck exercises each day. And each time, he would scream at the top of his lungs at me. I hated those sessions, but I had no choice. He had to stretch his left side of his neck muscles as they were a little shorter that the right side. I forgot the term they used to call it. We made him lie on his side as well. An hour on each side. Here he is lying on his front with his neck to the side. He would fight me each time. He had to do exercises to strengthen his neck muscles too as seen below. I hated it each time we had to do all these exercises but I gritted my teeth and did them with him. He probably hated me at that point. What with the way he was screaming at me.

I was happy to stop all these exercises when Dr Lai decided that if non of these were going to benefit him much, lets not do it anymore unless I wanted to. I decided that since he hated it, and there was no marked improvement unless an operation is done, lets just stop pissing him off with all these sessions everyday. This only happened after the diagnosis. We decided that we would only do things which bring comfort to him. And if anything that does not seem to have any contribution to that, we would stop it.

See that thing on his little hands? Yups, they said he needed that too. A brace to keep his fingers from clenching. Didn't help one bit. He was a little too smart for it. He either swung it off. I have no idea how he figured that one out. Or he would pull his thumb out of the brace. No mean feat for the little one. Eventually, we gave up. I did finger exercises with him, which was more beneficial. It worked and he actually stopped clenching for awhile. At least until the stroke. After that, his hands were usually clenched up. It is a trademark with most Menkes disease patients. Something I noticed.