Sam's bath

At my sis' house. We didn't bring Sam's bath chair so i had to make do with my sister's red timba. Figured i could play with Sam as well. Sam enjoyed it too though it isn't obvious in the pictures. One of the perks of having a baby is having something (ay someone pala) to play with. ^_^

Gulat


Playing with Sam.

Bye Tube

Sam has been without a tube for almost 2 weeks now. We went home to Laguna for the graduation celebrations of so many friends. We didn't go to the graduation itself but attended 3 celebrations in all. Anyway the Saturday morning we left for LB Mark and I decided to pull out Sam's tube so that people won't stare at him out of curiosity or pity. We wanted him to look cute. It was pretty strange but it was so cool, and still is, to see people react to Sam just because he's plain cute. I've been so used to the tube that as crazy as it sounds I actually missed it a few times especially when I saw Sam's old picture on my sister's desktop. I think the tube was cute too, in its own way. I'm feeling sentimental about it. It was almost a friend. It was comforting because i knew it prevented Sam from getting pneumonia again and again. Besides it was way easier to feed Sam with the tube. I'm not saying that I want the tube back, just that I miss it and am greatful for how much it made Sam's life better. Now its time to move on to a stronger and hungrier baby. I'm so proud of my baby. He has so much fight in him and has been behaved and jolly through all this (except during therapy!). Still so much to blog about but I have to work. Will write more Sam updates tomorrow and about our visit to LB.

Presenting Sam's new look......

Sam Update

We just found out that Sam was actually misdiagnosed. We have actually known about the possibilty for about a month now but didn't want to post anything until we were 100% sure. Results are out and Sam has what is called the Prader Willi Syndrome.

After thinking that my baby was going away for good and suffering with that knowledge for months, we were told that he actually has a different genetic defect. The symptoms are similar to SMA in the begnning but is pretty much the opposite of it when the the baby hits the toddler stage. Not only will Sam be with us for a long time, he'll also be able eat, sit, walk and do pretty much everything on his own. The crazy thing about the disease is that kids are usually tube-fed when born due to weak muscles and then gradually grow in strength until they can eat by themselves and not only that but they usually end up obese because they never feel satiated! Aside from that he is expected to have developmental delays or difficulties in almost all aspects. Upside of the delays is that we are getting to enjoy his small succeses so much. Very rare is it that you'll find parents who get really excited and proud everytime their 9-month baby sits up for a few minutes or manages to finish a half ounce of milk using the bottle. Things are definitely looking up.

For those interested in learning more about what Sam has just go to the Prader Willi Syndrome Association website for now. I'm pretty sure though that i'll be posting more about it sooner or later. Hopefully sooner.

Thank you so so much for all the prayers and support. Miracles really do happen.

Learning to sit with Granny and Mommy.

I can sit with just a little help from my mom. ^_^

I'm so tired!

For all the parents out there

I love 43things. The support from the community is so uplifting and has helped me feel less alone so many times. This is a reply to one ofmy mommy posts.


And a woman who held a babe against her bosom said, “Speak to us of Children.”
And he said:
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies, so He loves also the bow that is stable.
--written by Kahlil Gibran from The Prophet

Self-awareness

Makikigaya na rin ako. Am interested in finding out how others percieve me. Room for change. ^_^

My Nohari window.
My Johari window.

Had a hard time with my Nohari window. Ayaw kasi ng more than six! Hehe...