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 3^rd Year knowing that we have CCHS and many more to come J

What does family means? Life lesson son.

Dearest son, I guess I am upset about somethings and I want you guys to learn from this lesson.  Mama gave birth to all 3 of you boys and in mama's eyes, there are nobody that mama love most or least, I love all of you guys the same, maybe in different ways because like Laynson requires more help in keeping him alive, Laynden needs help in keeping him in sight and Laynce needs help in keeping him less dramatic. :)  Yes, funny but you boys have real different personalities.

Anyway, growing up, I will need you guys to help each other as much as possible.  You do not charge any one of your brothers, rich or poor for anything and you do things for them for free.  Why?  Because you guys are brothers.  It doesn't matter if you provide services for a living, you will NEVER EVER charge them and if you get $ back, give it back to them.

Your grandmama always tell us that it's not about the $$$, after all, we are only sibling once in our lifetime.  Unfortunately, not all of us are practicing that because some people think they are providing service, blood or not... it doesn't mater.  But... that's something that I wouldn't do.  Not only would I be giving my time and service and not take any money but I will do more because they are my siblings.  I guess, even though I may look like the less fortunate one in the family, I do believe that what I do for the family, God has eyes to see and he is making my dreams come true.  No matter how much people hoard and be selfish and greedy.... you will take longer than you should because you of what you did or did not do.

Good luck to those who hurt me.  Unfortunately, talking out loud about it, didn't help.  To the person who hurt me again and again.... you think you love me, but honestly, you don't.  It's ok.... I don't need any love, I have always been taking care of myself and the family.  After the email, I was so upset for 2 days.  I picked myself up and console myself but yet again, you want to try to destroy me again today.  It's ok... you can take everything but just bare in mind, once I move, I will never set foot into your door and this is it.  You will just be a hi bye friend to me.  There are a lot of people that hurt me and yet I still talk to them.  It wouldn't be different, I will still talk to you but just know that you lost me for good.

So boys.... when people get hurt, it is the end of some things so, keep our family line strong.... we need each other.  I love you boys!

I am 3 YEARS old!!!!

Wow.... what an incredible journey it has been.  I guess the days approaching your 3rd birthday has been challenging for me.  I am not sure why the 1st or 2nd birthday, it wasn't as bad but this year.... everything just came back to me like it was just yesterday.  I can picture walking into the L&D, expecting you to come out and waited for you at the post op room but you never came.  Instead, you went into the NICU and never came back out till months later.

Oh my... what should I say to you Laynson?  I don't know where to begin, let's just start with "I am so very proud of you".  Things that were told that you will not do or take forever to do, you proof them wrong. You are so smart, unfortunately, they keep saying that you are smarter than Laynden who is almost 2 years old.  I guess Laynden just keeps more to himself.

Anyway, mama came back earlier just to make sure mama got to say Happy Birthday to you.  I love you and you have to promise mama that we will have uncountable birthdays together!

Our Curse ~ Yes.... it's mine too... Ondine's Curse....

Too bad, we were not there at 2014 CCHS conference, so, we didn't get to watch "Our Curse".  Not that I am not watching my own daily but yes, heard many raving reviews about this short documentary.  And YES, it was nominated for the 2015 Oscar Short Documentary, I hope they will win, it will increase the visibility of CCHS and please, please find a cure someday.

http://oscar.go.com/nominees/documentary-short-subject/our-curse

God is great!  Can you believe that he knows that I am in this little small town in Greensboro, NC and he decided to entertain my travel for work by having Geeksboro Coffeehouse Cinema to show it?

I can't wait to watch it and will be bringing lots of tissue paper!!! Yay!!! Finally get to watch it!

A year since the scariest day of my life - 01/24/2015

A year ago, I almost lost you, it was the scariest day of my life.  When they were able to revive you, I thought you had brain damage and holding and bagging in the ambulance.  I imagined the worst, people asking me to turn off your life support machines and let you know.  At that very moment, I felt like the world is so cruel.  Why would God do such a thing, giving us hope and such a cute son and then take it away.  The journey from the house to the hospital took forever is how I felt.  They told me that there were police cars, fire engines, etc but I saw nothing, all I knew is to dash up the ambulance, we need to save you. 

But you have always been a fighter.  You have the fighting spirit of your mama, but on the other hand as I think about it, I think you are the one the stronger one.  Mama has learn so much from you.  You fight, you disagree, you are rebellious and all that in you makes who you are today and this is the spirit that keeps you here today.  I am so proud of you.

On 1/22, grandma called me telling me that you are sick again.  You can't be off the vent.... again, I cannot help it as I just read about how Landon passed away.  His mama wrote ever detail of how he passed on and I cannot help it but to cry like a baby because I cannot imagine being Brandy and the saddest part is to bury her son on her birthday.  Again, I thought, what has this sweet lady that inspires so many people and she is the one that I look up upon to continue my journey deserves this?  I was so worried, I cannot help but to think about scary stuff.  All the what ifs???? What if God just gave me one more year with you and he's about to take you away?  Sloane passed away around 2.5 years old suddenly.... it is so scary.  I have seen you gone in front of my very own eyes, I am scared.

I decided to take no chances, I've got to fly home.  I took off and found the last fight out of Greensboro, NC.  I didn't care what time I would land,  told myself that I needed to go home to see you.  If in case anything happen, I wouldn't forgive myself for not being with you.  Honestly.... finally 1/24/2015 12.26 am came.... I didn't want to live through this moment.  I went to bed and slept.  I am so glad... it was just another day and I know that eventually, I will over come this day.  I love you sweet heart....

Cruising with a child on life support (Trach & Vent)

Yay, we did it AGAIN!  Another one of our Mission Impossible events after knowing we have CCHS. Though, this experience we are sharing is based out of the Houston Port with Princess. We are not sure what other ports or cruise line would do.  We went on our first cruise from Houston, TX to Roatan Honduras, was supposed to go to Berlize as well but due to the weather, that port of call was cancelled and our final stop was Cozumel.  We went on our cruise with Princess.  Honestly, since it's our first cruise, it's already a PERFECT cruise, even though my other friends who has been to several different cruises told us that this is not the best but trust me, I am not complaining.

We didn't want to be late, so, we started our journey the night before.  We were at a hotel near Galleria.  We unloaded the stuff that we needed, of course his vent, ambu bag, etc.  All of the sudden, we said, where is the emergency bag?  Gosh.... we did not realize that we forgot to bring our emergency bag.  Thank goodness, mama happen to grab an additional trach with her in her handbag went we left.  I was very tempted to post a message asking MOTB if anybody is living near Houston that can give me an extra step down Shiley 3.5 trach but I guess I didn't think that it was necessary at that moment.  But after the incident which I will mention later, I think it was definitely something that I needed to do.

Anyway, we left that morning.  We were all excited, headed to the port.  I called the coordinator with Princess, when we were arriving.  It was definitely a VIP experience, when we got there, they signaled us and told us to drive straight to the front loading area where else others will still have to wait in line for their turn to get down.  After that, we were brought through the employee entrance, which again was a lot faster and I really appreciate that as I try to not expose him to too many people and that was perfect.  The only thing is we didn't get to take the "Welcome" cruise picture, which isn't a big thing at all, because most of it didn't turn out good anyways. 

We were excited as we were leaving.  We were supposed to leave at 4pm but somehow, it was delayed and didn't leave till 5pm.  As we were leaving, suddenly, the captain announced that we had an emergency and someone needed medical attention and we need to go back to the port?  Really?  I quickly texted my other friends to make sure that they know we were not the one that needed medical attention. 

Anyway, it was a fun night and day and suddenly, you just didn't feel well.  You had your fever and then just couldn't keep up your sats.  I am glad we brought the POC, if not, we would have been in big, big trouble. 

Then, came our first formal night, we were all dressed up ready for our pictures.  Mama let you play with the bread,etc and suddenly, you choked.  You showed signs of distressed and you were turning color.  I quickly took you out of the chair and laid you down under the lights.  I tried suctioning but nothing came out.  We realized that our emergency trach wasn't with us, it was up in the room, we forgot (another red flag and lesson learn with the trach baby to always have your trach with us.  CJ ran up as fast as he can and suddenly, you just gave up.  You just decided to quit breathing.  I told mom, we are losing him, we are losing him, I've got to get the trach out thinking that it could be a plug.  I took the trach out but saw it clear, I started bagging with the mask and then you started fighting me a little and you coughed and started crying again.  I am thankful that the waiter and his supervisor took it seriously and called 911.  But of course, but the time they came, CJ came with the trach and we immediately put the trach back in.  Suddenly, your sats are 98-100, you no longer need oxygen.  I thank the medical team that came, they told me to sign a paper saying that I declined to go to the medical office for further assessment.  They told me, you've done it all after all.  This little fighter ended up just sitting down playing his ipad and acted like nothing had happen.  We finally had the opportunity to take our formal family picture.  Honestly, I barely could smile because I didn't feel good for the rest of the night.

The rest of the cruise were just wonderful.  We managed to take more family pictures. 

We made it!  It was scary, there were a lot of things that we learn and we will continue learning about you and our life with trach and vent. 

Tips for special need parents:

1) If you made the reservation over the phone, immediately inform them that you are traveling with your special need child with wheelchair.  That way, you will get a room that is wheelchair accessible, which is at least 1/3 bigger than the normal rooms.  If you made the reservation over the internet, call the cruise line immediately to get a wheelchair accessible room.

2) Fill in the form, you should be able to find the form to fill for Special Need assistance and information on each cruise site.  If not, ask them to forward you the information.

3) Contact your local DME as soon as the booking is made to ensure that they reserve the Portable Oxygen Concentrator (POC).

4) Have a check list of what to bring.  We learn from our mistake.  We accidentally left our emergency bag.  Please note that we are lucky to get a syringe from them but if not, remember to bring the items that you don't usually use at home daily.  

5) For the vent patients, we have converted our 17" Targus Laptop Backpack.  If you see pictures of us carrying a backpack, we are actually carrying the vent.  I am planning to get another big laptop back with a handle and wheels so that we can roll for our next trip.  Also, we cut the side of the backpack, typically those segment is used to store mouse so that we can connect the vent circuit and still carry it.  Also, I have to put a small towel at the bottom so that the laptop and the side pocket's hole that I cut match and not break the vent circuit.  

6) Always bring extra because you won't be able to get much from the Medical department of the cruise.  

7) Don't count on the medical team on board.  Base on our choking and quit breathing incident, the nurses that happened to be there on our cruise did not have vent and trach experience.  When asked, she said that she has some, which you know it means none.  I thanked her for coming but she responded - You did it all by yourself.

8) Definitely have to bring extension cords, extra plugs because there is probably 3-4 outlet and it isn't enough for our machines, we had the vent, humidifier, pulse machine, CO2 machine, nebulizer, IPV, Portable Oxygen concentrator.  Some can be unplug while using the other but some has to be used concurrent.  Extension cords is crucial, if not, you will end up doing gymnastics like us, hopping over cords and with 2 other young kids besides Laynson, that has became a challenge. 

Lesson learn:

1) Always remember to bring our emergency bag.

2) Never let anything stop us from what we want to do.  It may be difficult but easy that life?
3) We bought a 17" Laptop bag with wheels so that we can roll the vent rather than to have to carry it all over.

Conclusion:
We are will be heading to the Alaskan Cruise in August of 2015 via Carnival this time!  

Saying goodbye is the hardest thing to do....

I left grandpa that day with a heavy heart.... though, I am so happy that you were also able to see your great grandfather.  Things that the doctors told you that you were not able to do were done...

I took off and headed back home alone.  I saw grandpa... he does not look like the grandpa that I left 3-4 months ago.  He lost 30-40 lbs within this 3-4 months.  He was diagnosed with TB, Lungs and Liver Cancer stage 4.  He barely could walk much, all he does is sleep all day long.

It's really sad.... I kissed grandpa many many times when I left that day.  I knew that it was the last time that I would ever see him in our lifetime.  I took off crying... wondering why life is so cruel... why do we have to know each other and love each other and yet, we have to say Good bye.  But I am also very happy and grateful that I got this chance, to see him for the last time before anything happens.  I asked myself, is it good that I had this chance or for some people, they don't even have the chance to say goodbye as their loved ones left suddenly.

Why is life being so scary?  Why???

Grandpa thank me, he said, he is very grateful that I came all the way to see him, to take care of him.  He told me that I'm his best grandkid of all, I take good care of him, I buy him lots of stuff, I give him lots of money.  I feel that since I am not there to take care of him, that's all I can give him.  I also thank him for being such a wonderful grandpa.  He loves me so much, growing up, he does everything for me.  He wouldn't even let me take my plate to the sink, he would do everything for me.  He built the BEST patio ever for me... made my house so pretty.

Grandpa, you just don't know that you are the smartest grandpa that I've known... you know so much, from cars to machines to building stuff.  You may not have the opportunity to get a degree but to me, you are smarter than all the other engineers out there.  You were very very sad.... I've never seen you cry... you were such a strong man but when I left that day, you broke down and you cried.... we both cried because it is so hard to know that this is our last time seeing each other.  

I'm very sad... but I will always remember all the beautiful moments we have cherished together.  I love you grandpa.... I will always remember you.....