Celebrations!

It’s been a while since I have last posted an update.  Things have been pretty quiet around here :).  Timothy has been feeling well and have been stable.  His Hgb continue to inch upward without any medications!  Yay!  It’s currently at 10.9.  His platelets are still dependent on the weekly shots.  We have decreased the dose, but it seems like he may need the higher dose.  His platelets have gone down this past week.  And we are at 127.  Not bad, but not great. 

Other than the medical update, we are officially on summer vacation mode.  Claire has graduated from preschool and will be entering kindergarten in the fall.  She does not look forward to this change and says she would like to stay in preschool forever.  But I am pretty sure she will love kindergarten. 

During her graduation, she skipped, waved, smiled and entertained :).  She has become very social this past year.

Congratulations to your very first graduation, Claire!

We also had a party for Timothy.  To celebrate Timothy’s medical journey in his short life, we gathered with family and friends.  This was our way of saying thank you.  As I look back, our time in Houston seems like a decade ago.  Though some of the memories are vivid and clear, some are fading away.  Some things will be forever etched in my mind and others are becoming a distant memory.  There are some things I will never take for granted and some things I will probably have to look back on this blog to remember.  I am so thankful to be where we are.  The outcome could have been very different, but we are here and Timothy is in health and happy.  My heart swells with gratitude.  When I look at Timothy, I cannot but smile.  Each time I kiss his cool fever-free cheeks, very few things can match the satisfaction and happiness I feel.  I know his life will always consist of doctors and hospitals, but for now, we enjoy the present. 

Here are some pictures… enjoy! 

The theme was Oh, the Places You’ll Go!  by Dr. Seuss. 

Notice T’s teeth… on a side note, he needs major dental work soon :(.

Thank you to everyone who made this possible!!!  And to Timothy… to all the places you’ll go… we celebrate life!

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Happy 5th birthday, Claire!  We cannot believe you are already 5.  We are so thankful for you.  You are sweet, funny, and smart.  You definitely make us want to be better parents.  Your very presence is a gift enough for us.  Mommy and daddy are challenged to better nurture and guide you to become a grace-filled young lady.  You make us proud :). 

Some highlights from the past year:

-You’ve definitely have become more social and outgoing.  Loves attending school and calls most of your friends your best friend.

-You sort of taught yourself how to read.  I was amazed today when you read your birthday card from us all by yourself.

-You love to play with your brother, and boss him around, then eventually fight.  But most of the time you yield and let Timothy do what he wants to do.

-You still love mac n cheese A LOT, along with Trader Joe’s gnocchi, and all types of meat, including seafood.  You like to eat shrimp in its entirety, head to tail.  You definitely dislike rice, except with ggim or fish.  You love taking lunch to school on lunch bunch days.

-Recently, you have been really scared of the dark and very sensitive to noise, even more so than before.  We are working on that these days.

-You love being in Playsports and being exposed to different types of sports. 

-Though you are very verbal, we are working on expressing yourself when you are upset and being more honest with your feelings. 

-You love books, art, princesses, super heroes, cars and trains, and of course anything electronic.  You also love going to school, attending church, having people over and looks forward to district gathering every month.

We love you, Claire… more than you’ll ever know.  Happy birthday…

Claire celebrating with her preschool class:

Celebrating with family:

Timothy was excited to blow out the candles too, but was extremely upset he did not get any presents… oh well.

*A quick Timothy update… so far so good… we are really praying his lungs are good to go.  Thank you for praying and we continue to ask for your prayers as we approach our 1 year date.  We will be going to TCH for our check up in February.  We are excited to go back!

Day +340

We have been more adventurous the past few weeks.  Timothy had his first playdate since his transplant.  It was the first time he played with another kid since December of 2011.  He was so excited to meet his friend.  On our way to Travel Town to meet his friend, he declared “B” as his best friend :).  He still asks to go to Trader Joe’s (he means Travel Town) almost everyday.  And when you ask him who his friend is, he will say “B” is his best friend.  It was so nice seeing both Claire and Timothy have so much fun playing with other kids. 

This past weekend, we took a mini family vacation to Carlsbad.  Instead of having parties for either of their birthdays, we decided to take them to Legoland.  It was their first amusement park experience.  Claire was very excited.  She started counting down the days on her calendar, marking each day, getting excited until we got there.  Needless to say, both of them had a great time.  Timothy was so excited to ride everything.  Fortunately, he made the minimum height requirement for most of the rides.  Claire did enjoy herself towards the end of the trip, but for the first few hours, she was very hesitant and scared.  She didn’t like all the noises the lego figurines made in the mini-Star Wars land.  She actually had nightmares of the “roaring” sounds… She is a sensitive one…

Here are some pictures from the trip:

We fed them as soon as we got there, because food relaxes and calms them (esp. Timothy).

He wouldn’t let me steer… very insistent that he’d do it all by himself.

Claire would not go on the above boat ride.  But finally loosened up to drive the car.

I couldn’t resist this…

as he took the picture below.

Claire having fun :).

Timothy had so much fun driving.  He loves his cars.

It was a very nice day.  And as you can see from the pictures, it wasn’t crowded.  We felt very comfortable and even somewhat relaxed :). 

Tomorrow is his appointment.  There’s a good chance he might be completely weaned off the steroids.  Frankly, I am more nervous than excited.  My prayers have been more earnest lately.  I hope and pray his lungs are ready.  I will update after his appointment.  Hope everyone is well!

Day +284

A quick update on Timothy’s cough.  He is still coughing.  Sometimes, it sounds better and sometimes it doesn’t.  But the good news is, he seems to be feeling better.  He is more playful and happier.  I had a few moments of panic this week contemplating if we should call the doctor or not, but it seems as though he has a cold.  We have an appointment tomorrow, hopefully the doctor will confirm it’s just a cold and not his lungs.  During the most stressful time this week, I was driven to prayer.  When I am most desperate and feel that I have no where to turn to, that’s when I realize God is my only hope.  During this time, I came to realization that I have to be okay with each setback.  (Though this week’s was very minor.)  Since the transplant, slowly and surely, I began to relax and started hoping for a complete cure.  I wanted to be able to say his health has been improving dramatically.  But once in a while, all my fears would creep in and stir my insecurities.  What if he has to be on steroids for the rest of his life?  What if all the long-term side-effects cripple Timothy’s quality of life?  What if all the medical necessities never end?  I still hope and pray for a complete cure, but if that’s not the case, I have to be okay with whatever God has intended for Timothy’s life.  Because physical healthy is not the most important thing in this life.  As long as Timothy and our family know God and live our life accordingly for His glory, I have to be okay.  I don’t think I am settling, but accepting.  And whatever the future holds, I hope Timothy would feel the same way. 

On a lighter note, both Timothy and Claire had their FIRST haircut ever this past week.  Yes, Claire is almost 5. 

Timothy before his haircut:

After…

And here’s Claire:

And after…even after 5 years, this is all we cut off…

I asked her why she was frowning and she said, “I don’t like my haircut.  I want my old hair.”  What a girl…