Monday, March 22, 2010

Home at last - what s next ?

After stay at some relatives, finally we manage to go back home.Sam is doing fine.He grows stronger everyday.His hands movement is better controlled.Left hand better than the right hand.He can grab toys. So are his legs, they are stronger now.

We re so glad that now he show some understandings on some words. He will makes sound with his lips when he do ' kiss bye'. He enjoy when he learns to express himself. And we enjoy to see him becoming more and more a normal little boy.

Though having a late development, suspected of mild brain injured, our neurologist said, strongly we believe Sam is a normal clever little boy. Perhaps a 'premature' boy now but he will catch up
Praise God, the horrible Hemangioma already resolved.No more problems to his organs.All are fine.Just to do regular check up once a year for medical standard procedure.

We stumble on the trachea tube.The last diagnosed in Jan 2010 was laryngomalacia ( soft collapse airways ) subglottic stenosis ( one area of airways become narrow ) bilateral vocal cord paralysis ( no movement of vocal cords ) .Feel confused of the medical term ? So were we.
Here is some info from internet we found:
Not much information,some children get the diagnose since they were born, some get it because of medical treatment they received.
Some children can overcome it when they grow older .somehow they just recovered spontaneously. Some children not. Some doctors do some surgery to fix it, some prefer not to.
Well, if you need information about trachea things on children,you may check it on www.trachkid.com .

Btw, our ENT suggest to do airway reconstruction surgery but then they found that Sam has aspiration. If you wonder of what is this - another strange word,here it is :

Aspiration mean the patient get food or salive get into their lungs in stead of to their stomach. Last january Sam got the test . They
gave him a blue milk ( it is really blue ) through his mouth try to see whether Sam can swallow. We cuddle him, sing a song, try anything to calm him since he was so nervous with food in his mouth.Imagine you not eat anything through your mouth for more than a year then now you need to show that you can swallow food in front of a stranger.Dont think as an adult who already understand how tasteful FOOD is.

Sam taste the milk,he looks hesitate but then his mouth was moving. He can swallow !. Before we become too happy, Sam cough and cough.We do suctioning through his trachea tube.There it is, a thread of blue milk come out.
I feel I m almost cry that time.
THAT IS aspiration. That bad ugly aspiration.
No wonder why our moms told us not to talk when we eat. It may lead to aspiration.Aspiration may lead to lungs infection.

So, Doctor said even a surgery cannot be done now to reconstruct Sam's airway.
We feel that we just come to a dead end.

If the tube have nothing to do with Sam development may be we are more "happy" to have it a bit longer on his neck. But we believe Sam feel it s uncomfortable to learn how to creep and move with something stuck on his neck .He always cry and cry, maybe too afraid his movement will make his tube hit the floor and hurt him.

Are we too much complaining ? If you think we are happy since Sam has recovered from previous sickness. Yes we are.
But it is like we just climb out from one deep hole to fall into another.
Cannot think that our baby recovered from sickness to have a less normal life .It is a big No.

And this is what we always write.
There is a saying of "When God closed the door, He open a window." Now,let s find that window!

Anybody know where we can find second opinion ?In Asia location ?
The two ENT surgeon- expert on airway management- we got from other parents stay in US and Australia. It s seemed beyond our reach.

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