Day +285

Today’s appointment went very smoothly :).  During the vitals, I must admit, I was very nervous when they checked the pulsox.  The oxygen saturation should be in the high 90’s.  When it dips down to 80’s, we could be admitted.  It started reading 88 and wouldn’t go up for a few seconds.  I was getting nervous.  Then it slowly started going up until it reached 98.  It was a huge sigh of relief when I saw that number.  The doctor listened to Timothy’s lungs and they were clear.  His cough is most likely something viral and not his lungs acting up.  We weaned his steroid dose once again and this will be the lowest it will go ‘til he is completely off.  The next thing is to get his cortisol level checked to make sure Timothy is producing them on his own.  Our next appointment is in a month!  But we do go back next week for his EKG and echocardiogram.  Please pray with us that Timothy will be off his steroids without any complications really really soon.  Thank you!

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…

Day +280

Daniel processed the pictures and here they are!  We went to Walt Disney Concert Hall in Downtown L.A.  One of these will be our Christmas picture.

Timothy did great in all the pictures and Claire was super excited to be out.

It was a bit windy and chilly…

Love Claire’s awkward pose :)

I do have one prayer request… Since the photo shoot day, Timothy has been coughing a little bit.  Not a lot, just a little bit in the morning and in the evening.  First it was a dry cough, but it has changed into phlegmy cough.  Both Daniel and I are very attentive to every cough and are on high alert mode.  I have been rationalizing that it could have been the cold weather/wind, or Claire’s recent sickness, or just a common run of the mill cold.  Or it could be his lungs acting up.  His current steroid dose is the lowest it’s ever been.  He has been on this does for a little over a week now.  I have my moments of feeling really nervous and anxious to not…  We try to listen to his breathing and try to assess ourselves if it’s anything or not.  Please pray with us.  For peace, reassurance, trust, and for Timothy’s health.  We do NOT want to be back in the hospital again.  Thank you.

Day +276

Thank you for your prayers and concern!  Claire has fully recovered and it seems like Timothy didn’t catch the bug :).  When we allowed them to play together, they were very happy and didn’t even fight once all day (sadly, it only lasted for one day).

Today we had a photo shoot with our own veteran photographer!  We have been itching to go out and do something else besides staying home.  So we decided to take family pictures.  Hopefully, we can use one of them for Christmas.  The kids enjoyed being out together.  I will post pictures as soon as Daniel processes them. 

And to end the day, we even went out to a restaurant!  This was Timothy’s first time since January.  He was excited and kept asking where we were going… for like 20 times.  Here he is enjoying ramen at our favorite local ramen place.

Day +269

The past few days have been stressful.  Not because of Timothy’s health issues, but because Claire caught a bug.  She had a fever on Halloween day and had some cough and runny nose the past few days.  Daniel and I tried our best to separate the kids as much as possible.  And so far so good.  Timothy shows no symptoms of sickness.  Because of his compromised immune system, even a tiny bug can manifest in more serious ways.  But at the end of the day, I had to be reminded that even this bug is within God’s control.  I was super stressed out on Thursday trying to wipe down, separate, and contain Claire.  Then I realized, I can give it my best, but the ultimate result is NOT in my control.  God uses all things.  And I am learning through this… Stressing out does NOT help the situation.  It only showed my lack of faith.  In any given day, good or bad, I need to be content and give it my best in all I do. 

Many times, Claire was neglected through this whole BMT process.  But for a 4 year old, I have to admit she possesses much patience and understanding.  She’s been really conscientious the past few days to stay away from Timothy.  She’d often tell him not to touch her or anything she has touched because it has her germs.  She’d play in her room by herself.  And she has been wearing a mask without much complaint.  What a girl :).  Poor Claire-bear, even when she’s sick she doesn’t get much TLC.

Having fun even with her mask:

When Timothy would be cranky (and he’s been cranky a lot), she’d remind me that it’s because of his meds.  She’s playing with only her allotted play-dohs:

My 2 bffs this week: