Monday, June 22, 2015

3 years ago today, we were diagnosed with CCHS.. 3 years later, we are living the dreams :)

Wow.... can you imagine, today would be 3 years that I found out that you were diagnosed with something that has no cure, diagnosed with what I pray it isn’t but it is… CCHS.  I still remember, it was a Friday, I was getting ready to go to the hospital to visit you.  I just took my shower, I was in the bathroom, at around 5ish, the phone rang.  I saw the number, I recognize it…. I knew it was coming but I was living in denial.  True enough… they said, Baby Wan (that’s what you were known in the hospital) has CCHS.  We need to schedule a care conference with Dr Gelfand tomorrow.  Are you guys available?  Yes, of course… not a happy tone, a sad tone.  I don’t know what is CCHS but reading about seems deadly.  We are doomed!  But… on the other hand, it is better than undiagnosed, at least you have a term, which means there are others who has it and hopefully we can follow along.

Rewind…. Several weeks before you were born, people asked me, are you nervous, are you prepared, etc.  My answer… nah… been there, done that.  I can do it in my sleep now.  The truth is…. I have NEVER BEEN HERE, I HAVE NEVER DONE THIS!  You read books like what to expect when you are expecting… what to expect the first year.  There is no book that says, what to expect when the unexpected happens.  I jokingly told myself, maybe that’s what I would do someday.  Write a book that says, What to expect when the expected happens or what to expect with CCHS. 

Though, it really isn’t that bad.  Yes, the next day, 6/23/2012, we had a care conference with Dr Gelfand.  I did not know what to expect but I still remember asking that question, we have family back in Malaysia, can we travel back to see them.  His respond was, you will be lucky to travel out of Dallas with nursing help.  My world came falling apart.  Yes… we are doomed.  Right away, the trach surgery was ordered as ASAP.  We needed to reintubate him.  Oh no… can we not do that?  It hurts me seeing that, can we do the mask?  He said, ok for a few days but if not, we have to do it. 

Sometimes in life, it is just unexpected.  We cannot go by the books… of course, if everything is by the textbook, life is perfect.  Though, I am one proud mommy.  I would not change anything about you.  I love this little CCHS boy who makes funny jokes, there is nothing you cannot do.  I love you Laynson Lim very much J  Happy 3rd Year knowing that we have CCHS and many more to come J

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