Channel 18 News

Post-Transplant update

On Timothy’s medical front:

He continues to do well.  Since starting preschool, he has had a runny nose non-stop.  But he has been fighting through every single illness without any help from meds.  It’s awesome to be sick and to not worry about his sickness.  I can’t believe he hasn’t taken any medications for months.

We have slowly started to see some of the side effects from the numerous meds he was on during his transplant.  It’s already determined that he will have teeth issues.  His adult teeth are already coming in (I know… they are early, but he had his first baby teeth at 3 months.) and they are hypocalcified (softer enamels).  This means he will be prone to cavities more than others.  Fortunately, his 2 front teeth came out normal, but his molars are coming out hypocalcified :(.  We will just be extra vigilant with his dental check-ups.  FYI, we use MI paste to protect his teeth every morning and night.

Hope everyone had a wonderful Thanksgiving!  And happy December :).

2nd Annual and Korea Daily

Greetings!  It’s been a while again :).  In a few weeks, Timothy will be celebrating his 2nd BMT birthday.  2 years already.  Amazing.  Thankful.  Happy.  For his 2nd annual check-up, we were able to go back to Houston.  It was wonderful seeing our doctor again and being in the familiar place once again.  But this time, not with anxiety and fear, but with ease and even comfort.  I just love Houston now.  As expected, Timothy went through a slew of tests and for the most part, everything checked out normal!  Our doctor had slight concerns with Timothy’s kidney function and his thyroid numbers.  We will be following up on those 2 things here at home.  I will keep you updated.  Timothy will be getting a renal ultrasound in the near future to make sure his kidneys are ok.  Other than that, the doctor was pleased to see how good Timothy looked :).  He has made so much progress the past year.  I really can’t believe a year has passed since we last saw our doctor.  We continue to pray for his progress. 

On a different note… we were in the Korean newspaper this past week.  It was a follow-up article on Timothy.  Two years ago, there was an article on Timothy to encourage the public to register to become a donor.  And below is the follow-up article.  Sorry, it’s in Korean.  If you really want to read it, you can try the google translation.  It may sound choppy and off, but you will probably get the gist of it.

[Week & Story] 희귀병 4살…사랑으로 일어서다

[LA중앙일보]

의사와 끝없는 상담·신문·교회 찾아 골수기증 부탁
'집념 모정'이 막내 아들을 웃고, 뛰고, 떠들게 했다

발행: 01/25/2014 미주판 1면   기사입력: 01/24/2014 20:27

23일 페퍼로니 피자가 제일 좋다는 티모시 송(4)군과 (뒷줄 왼쪽부터) 엄마 앨리스(40), 누나 클레어(6), 아빠 대니얼(40)씨가 활짝 웃고 있다. 아래 작은 사진은 지난 2011년 본지에 소개된 송군의 기사. 김상진 기자

포동포동한 얼굴, 뽀얀 피부의 티모시 송(4)군이 우당탕 소리를 내며 문을 열어준다. 그리고는 풍선을 들고 셔츠가 땀에 젖을 때가지 누나 클레어(6)와 함께 온 집안을 헤집는다.
라미라다에서 만난 티모시는 밝고, 건강했다. 지난 2일, 무사히 네 번째 생일을 맞은 이 아이의 얼굴을 보면 3년 전 본지를 통해 '골수 기증자를 찾는다'며 다급하게 호소했었다는 사실을 잊게 될 정도다. 당시, 티모시의 병명은 '만성육아종증(CGD)'. CGD는 백혈구의 면역체계가 기능을 발휘하지 못하는 희귀질환이다. 아시안골수기증협회(A3M)에 따르면 협회에 등록된 CGD 환자 사례는 티모시가 유일하다.
티모시의 골수 찾기는 한인들의 관심에도 결코쉽지 않았다. 생후 2개월 때 발병해, 2012년 2월18일 골수이식 수술을 받을 때까지 엄마 앨리스(40)씨는 집요하게 병원을 찾아다녔다. 전국의 의사들에게 무작정 전화를 걸어 몇 시간씩이고 아들의 증상을 알렸다. 신문과 개인 블로그(www.alicesong.com), 한인 교회를 찾아다니며 골수기증을 부탁하기도 했다.
텍사스 휴스턴에서 17명의 CGD환자를 살렸다는 병원을 발견했을 땐, 4식구가 짐을 싸 7개월간 머물기도 했다. 혹시나 밖에 나가면 아들에게 균이 옮을까, 식구들은 집 밖으로 나가지도 않고 늘 붙어있었다. 오직 팀(Tim)을 위한 팀(Team)이었다.
"모든 생활이 아들의 검사 결과에 따라 움직였어요. 처음엔 '왜 우리가, 왜 티모시가 이런 일을 겪어야 해?' 하며 많은 날들을 보냈는데…지금 생각해보면 감사한 게 많아요. 어릴 때 병을 발견했고, 좋은 의사를 만났고, 골수이식에도 성공했고요. 아들 때문에 만나게 된 사람들도 많아요. 생면부지의 티모시를 위해 기도를 해주고, 몇 시간씩 걱정해주는 사람들이죠."
골수이식이 끝난 후에도 시련은 있었다. 수술 1년 후, 완치됐다고 믿었던 티모시의 혈소판.백혈구 수치가 널을 뛰듯 왔다갔다하자 잠시나마 평온했던 나날은 또 다시 병원에서의 삶으로 바뀌었다. 그때마다 신앙이 버팀목이었다. 강한 믿음은 강한 엄마를 만들었다.
"티모시는 어찌 됐든 평생, 병원과 연을 쌓고 살아야 해요. CGD는 유전이 될 테고, 아들은 1년에 한 번씩 검진을 받아야하죠. 누구나 다 살면서 각자의 짐을 안고 버티잖아요. 우리 아들은 그게 '병원'일 뿐이에요."
한바탕 뛰어놀던 티모시가 만화영화에 집중한다. 2014년 새해 소망이 뭐냐는 말에, 앨리스씨는 "글쎄…이미 이뤄진 것 같은데요?" 하며 싱긋 웃는다. 이번 한해는 티모시에게 '약 없이, 주사 없이' 생활하는 생애 첫 해이자, 다른 가족들이 균 걱정 없이 여행을 떠날 수 있는 기회다. 아들과 함께 공원에 갈 수 있는 게 요즘 가장 큰 기쁨이란다. 축구에 재미를 붙인 아들을 보는 재미가 쏠쏠하다.
"의사선생님들이 우스갯 소리로 '티모시는 채혈검사에서 여자(골수기증자의 피)로 나올 테니 올림픽선수로 키울 생각은 말라'고 하는데(웃음)…건강하게 뛰고 있다는 것 하나만으로 너무 감사해요. 물론, 골수기증은 힘들고 어려운 일이지만 (이렇게) 한 아이를 살릴 수 있잖아요?" 아픈 한인 어린이들을 위해 골수기증등록이 늘어나면 좋겠어요."
새해, 새출발, 기쁨이 넘친다.
구혜영 기자

I think the reporter carried my voice well in her writing :). 

Gratitude

It’s been a while.  The past several months, I have inadvertently taken a mental break from blogging.  It was my way of not having to think much about Timothy’s health.  Life with Timothy has always been coupled with his medical updates and his sickness.  After our celebration in June, a part of me wanted to move on, even if it was for just a few months.  I also want to find a new direction for this blog as well.  Timothy’s well-being changes the reason why I began this blog.  I am still pondering and contemplating.  Any thoughts?

But I did want to share about where we are as a family in regards to our experiences with Timothy’s transplant.  Not too long ago, I had an epiphany.  Or should I say a deeper understanding of the state of my heart.  The past 4 years have been riddled with many highs and lows.  Highs that were so high.  And lows that were too low.  But through it all, God allowed my faith and held on to our family.  I knew we were not alone.  This knowledge was what kept our family together and gave us hope.  There were many days, despite this knowledge, our hearts questioned and complained.  Why us?  Why our son?  A few months back, this head knowledge was translated into my heart.  Now, if someone were to ask me about our experiences with Timothy, I can whole-heartedly, unreservedly say that it was a blessing.  A blessing that Timothy was diagnosed with CGD.  A blessing that he had a transplant.  A blessing that our family endured difficulties.  And a blessing that it was our son and this happened to us.  I truly and honestly can say this.  (Of course by His Grace).  So many wonderful relationships have been forged.  So many blessings have been experienced (too many to name).  Our eyes of faith have been opened to see more clearly what it means to believe, depend and have hope.  And this would not have been possible without Timothy and his illness.  Life will trudge on.  But that’s just life.  When I forget my ways and start complaining, I hope to remember what I have written this day.  (Just as a side note… don’t get me wrong, there have been many days and weeks even in the past year, where I have complained, worried, nagged and felt hopeless due to Timothy’s health.  But it was through those times, where God revealed my heart and taught me what it meant to trust and believe, especially when things didn’t go as I had planned.  Lessons were learned and our family grew in our faith.)

As we approach Thanksgiving this week, I am filled with gratitude.  For my son.  His health.  For peace in my heart.  For new and old relationships that have blossomed.  For life.  For faith.  And for this walk.

My sweet boy…

Recently we took some family pictures through our talented photographer friend.  I will share more pictures soon!

Happy Thanksgiving everyone!!!

P.S.  I feel the need to include a medical update :).  Timothy is off all oral meds.  His platelets have been sort of holding up on its own (sort of).  His platelet shots have been monthly at a very low dosage.  We will check his counts again in 2 weeks to see if we will continue the shots or to wean him off.  Other than the platelets, he is doing great!  A week ago, 11/17th to be exact, there was a break through in his socialization.  Up until now, he was fearful of people and always clung on to me in public.  All of a sudden, he started playing on his own without me by his side.  Just like that.  He was running around and playing with other kids.  Without any reservations.  Carefree and happy.  It was amazing.  Another reason to be thankful!

Readmitted @ CHOC

We had our blood work done today.  Timothy’s counts went down again.  Additionally, the Coombs test came back positive (which was negative a few weeks ago).  What this tells us is that his body is destroying his own red blood cells.  Also, he is not producing enough either.  With these results, we are back at the hospital.  The plan for now is to boost his immune system a bit (with IVIG), probably get blood and platelet transfusions, get a bone marrow biopsy and start on steroids.  Besides his pasty coloration and the bruises, he is totally fine.  Good energy, eats well and is playful.  On our way to the hospital, I asked him if he felt better and he responded by saying that he is not all better and he is still sick.  He didn’t fuss or complain about being admitted and staying at the hospital.  I guess he knew he needed to be here.  We ask for your continued prayers.  It’s almost 11 pm and we are still waiting to get our chest x-ray and his peripheral IV line in.  It’s been a long day.  Thankfully, Timothy is still in good spirits. 

Hope and Clarity

Kids have so much hope.  They don’t seem to dwell on the past, but live in the present.  This is true of my Timothy.  For about a month and a half, his platelet count has been low.  FYI, here’s a quick definition of platelets from the web…“Platelets are irregularly-shaped, colorless bodies that are present in blood. Their sticky surface lets them, along with other substances, form clots to stop bleeding.  When bleeding from a wound suddenly occurs, the platelets gather at the wound and attempt to block the blood flow.”  With low platelet count, you get bruises very easily.  Yesterday, while Timothy was playing, he tripped over himself and fell on his face on our laminate floor.  And immediately, this is what we saw:

With a normal platelet count, this would not have happened.  For a kid with fairly high tolerance for pain, this fall would not have bothered him.  But last night, he was clearly in pain.  As his chubby hands tried to cover his wound, he started screaming in pain.  So sad.  But within a few minutes, he was totally fine.  All day today, he played as if nothing had happened.  As I studied his behavior, I could not but compare how I would have reacted if this happened to me.  For fear, I would probably stay put and feel “scared” to do anything.  Timothy on the other hand, ran around, laughed and played, not letting his “condition” restrict him in any way.  He just lived, not thinking about anything. 

I need to do that.  Yesterday’s appointment showed his platelet and hemoglobin counts have gone down again.  The good news is that the doctors are still not concerned and told me not to worry.  We are still trying to figure out the cause and to treat it accordingly.  Our CHOC doctors will consult with TCH doctors to figure out a plan.  There’s a talk of steroids again… please, please, please pray that we won’t go that route.  Please.  All I think of are the numbers and the possible causes/reasons for Timothy’s current state.  And it makes me dwell on the unknown, building frustration and desperation.  I need to be like Timothy and just live.  Live today.  One day at a time.  Faith and trusting in God seem impractical when I am in the midst of worry and anxiety.  I have been praying desperately, more like nagging, for Timothy to be fully well.  These transplant hiccups are expected, but hard to accept because you want your child to be THE one who sailed through all the setbacks.  So when things like this happen, I am at a loss.  I think I put on a pretty good front for the most part, but in the quietness of my heart, turbulence and chaos exist.  This past Sunday, I was reminded that I need clarity.  I need to pray for clarity.  What a timely reminder… Thank you.  I will keep you posted.  But in the meantime, I am going to try and live each day to the fullest :).

Starting Over

Timothy had several firsts this past week.  We took him to a local playground with WOODCHIPS!  Woodchips and CGD don’t go together and we have always avoided woodchips.  Well, not anymore.  It was a very strange feeling letting him go and explore.  It was a mixture of excitement and tension.  I couldn’t stopping smiling at this milestone.  We have come a long way.  Timothy was very excited to play and explore.  He still gets very timid and fearful around people, but managed to have a good time.

His first slide since the transplant…

And of course our Claire had a lot of fun too.  She was happy Timothy was with her.

Another first…Timothy was able to go to district (small gathering of church people)!  He had a lot of fun and didn’t want to go home :).  I wasn’t sure how he would be around a group of people, but to my pleasant surprise he adjusted better than I expected.  It’s amazing how quickly kids adjust.  It’s an adjustment for me too.  I feel like we are starting all over.  I am careful and mindful of where he is and still worry about what he is exposed to.  Hopefully with time, I will be more at ease and will adjust to this new reality.

He is off all his meds now.  He was always on medications since he was 2 months old.  Every morning and evening and sometimes during the day, giving him meds was part of our life.  Not anymore.  Hopefully, he won’t ever have to be on long-term meds again…

My husband and I talked about how we are starting over in regards to discipline as well.  Because of his illness and what he has gone through the past year, we have been catering to all his needs.  And now that he is a little older, he thinks that’s the norm.  From social behavior to basic manners, we have to teach him and give him boundaries and guidelines.  We are expecting some tantrums in the near future.  But we are so thankful we have come this far and are at this stage of parenting. 

We have another appointment next Monday to check his platelets and hemoglobin.  I think his platelets are still low.  He still gets bruises and petechiae around his body.  Please please pray his platelets and HGB counts go up.  Thank you.

My little fighter!  I can’t believe what he has gone through all 3 years of his life…  What a resilient kid!

to CHOC

Timothy has been feeling much better since my last post.  He is not his 100%, but much better.  His platelet count seems to be stable along with his hemoglobin, which is not bad but it’s not where it should be.  We are praying that his platelet and HGB counts go up on its own without any intervention.  Especially his platelet  count.  It is significantly lower than where it should be.  So he has a lot of bruises these days :(.  We also stopped his cyclosporine!  Yay!  This is his immunosuppressant he has been on since his transplant to prevent GvHD (Graft vs. Host Disease).  Hopefully, all his excess hair will thin out :).  Currently, he is on 1 med and we are weaning that as well.  Please pray that his body will adjust well to being off cyclosporine.  Thank you. 

Since returning from Houston, we have changed our care to Children’s Hospital of Orange County (CHOC), from CHLA.  There were many factors involved in this decision including our doctor’s input.  We are very happy to be back at CHOC :). 

1 Year Check-Up

This past week was very long.  We were in Houston for his 1 year check-up.  It was to be uneventful, but instead we had to extend our stay for 3 additional days for more testing.  To rewind a bit… since my last post Timothy hasn’t been feeling well.  He had lost his appetite and starting gagging which lead to vomiting and fever.  We concluded it was just a virus that needed to pass.  When we got to Houston, his platelets completely tanked.  He had petechiae, bruises around his body and inside of his mouth.  His mouth was so raw, it started bleeding.  To further investigate and to strengthen his body, Timothy had a bone marrow aspiration and biopsy along with platelet transfusion and 2 days of high dose IVIG to boost his immune system.  We are still waiting on the biopsy results.  Before we left Houston, his platelet count went up on its own.  This is a positive sign that his body is making his own platelets (instead of destroying them which would mean he would have to be on steroids again to suppress the antibodies that are destroying his own platelets).  But nothing is certain as of yet.  We have another appointment tomorrow, with a platelet specialist.  Perhaps then, we will have a better idea of the treatment plan.  Please pray for tomorrow's lab draw…that his platelet count is higher than on Friday’s (59) .  Normally, his platelet count should be above 150 (thousand).  In Houston, it was 5.  On Friday, it was 59 (due to the transfusion). 

So all of his 1 year stuff has to be postponed… like his immunizations.  We have to figure this issue out first. 

Thankfully, Timothy is still 100% donor cells :).  I was getting a little nervous about this in light of his platelet situation.  I didn’t know what was going on with his body.  But I was so thankful we were at TCH for this.  We really love our doctor there and he, as expected, took such good care of Timothy and us.  God’s timing and providence is truly impeccable. 

Here are some pictures from Houston after our last visit to the doctor.  By this time, Timothy was eating a little.  Of course, we took him on a train ride which perked him up a bit…

Over the 2 weeks he wasn’t eating, he lost about 4 lbs… but not on his face :).  He was pretty cranky throughout all the procedures and tests, but whenever we were at the BMT clinic, he was very cooperative.  I think he remembered the staff and the familiar place.  As far as the other tests are concerned (EKG, ECHO, GFR, CXR, bone age, chemistry and other counts), they all look good. 

Emotionally, it was up and down for me.  Whenever I saw his listless and tired body, my heart ached and all sorts of thoughts raced through my mind.  Thankfully, we were together as a family and that alleviated a lot of the mental stress for me.

And here’s our Claire.  She was so good throughout the week.  She had to wait a LOT.  We were at the hospital everyday and most days we were there 6 to 8 hrs, and on one day we were there nearly 12 hrs.  She was very patient and understanding… for the most part :). 

Needless to say, we are tired.  When we got home yesterday, Timothy went to bed at 3 pm and didn’t wake up until this morning.  He also had a fever yesterday.  And the rest of the family slept early too. 

Thank you for your prayers and love.  We appreciate all of you!

Day +366 (One Year!)

One year ago today, Timothy had his life-saving bone marrow transplant.  This one year mark is a huge milestone for BMT patients.  We cannot adequately express our thoughts and emotions.  I tremble with gratitude as I look back at our BMT journey.  I have looked forward to this day for so long.  And as this day has arrived, a deep sense of peace, relief and contentment fill my heart.  We’ve made it.  One year.  Through difficulties and heartaches, we have arrived.  Words fail me… but God knows, and He knew and will always know.  Thank you for traveling this journey with us… today is a day to celebrate and rejoice!

As I reminisced, I found some old pictures and videos…

Below is a video taken during his chemotherapy treatment, just a few days before his transplant day.  He was so happy and content :).

First time he needed blood transfusion.  He was so pale…and the chemo taking its toll on his little body.

February 8, 2012.  Transplant day.  He was really weak and listless.  But he was very adamant that he “read” his bible.  So I was flipping through his bible during his transplant infusion. 

He fell asleep before the infusion was complete.

His new marrow dripping down and through his veins… We are so thankful to his donor.  Hopefully, we will get to meet her one day.

Now, one year later, our little boy: (2/8/13)

He is still on 6 meds.  We are hoping he will be off most of them after our Houston trip.  He will undergo many tests and bloodwork for his one year check-up at TCH.  Please pray with us that he will have positive results…

Day +346

Thank you so much for your prayers.  So far so good.  Besides some crankiness, he seems to be adjusting well.  I have been checking his oxygen saturation everyday and listening carefully to see if there’s any difficulty in breathing.  But so far so good.  It’s been a nerve-wracking week.  I think I drove myself a bit crazy trying to assess every little change, checking his breathing, and praying a lot.  Thank goodness for the pulsox… It calmed my nerves everyday this week each time it read above 97 :).  Thank you, J!  I was bogged down by so many thoughts this week.  I checked my notes incessantly to compare and to be prepared for any similar symptoms.  Mentally and emotionally, I was very vigilant.  To a point, where I was physically exhausted.  Needless to say, I prayed a lot this week.  It’s been a challenging and growing week for me.  Please do continue to pray for Timothy.  As each day passes, that there won’t be a repeat relapse in his lungs.  And that he will be off steroids for good.  Maybe I am being overly sensitive and worrying too much, I hope so.  Thank you, everyone!  I will keep updating.

Day +341

It was decided.  Timothy will discontinue his oral steroids starting tomorrow.  He has been taking this since his transplant.  A part of me is so glad he doesn’t have to take steroids anymore.  Steroid is not for long-term use.  It has a lot of side-effects, both immediately and in the long run.  But at the same time, not knowing exactly why he was on it for so long makes me very anxious.  We know his lungs needed it and allowed him to breathe comfortably.  But the cause of the lung damage is unclear.  All I can hope is that his lungs are healed and ready to be off steroids.  Last time he was weaned off completely, he was back in the hospital within 4 days.  Before that, it was within 2 weeks.  Would you pray with us that Timothy will be okay without steroids and his lungs are healed?  I know this is a necessary step forward and a good one at that.  But I have a hard time putting my guard down, not knowing the future.  What I remember vividly is how I felt last time.  It was emotionally very difficult for me.  Please pray for me as well.  Whatever the outcome, I want to be thankful and handle it well.  Thank you…

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 +244

Update on Timothy’s health:
Last week, we met with a pulmonologist at CHLA.  As expected, we talked a lot about Timothy’s lung history.  The doctor was very thorough and patient.  So the plan is Timothy will start on the inhaler which has a tiny bit of steroids in hopes that when he is weaned off the oral steroids, his lungs will be sustained.  If this doesn’t work, they might do a lung biopsy.  I am hoping we won’t have to do this.  It’s a very invasive procedure.  Timothy’s chest x-ray from last week looks good and hopefully it will stay this way.

We also had a clinic visit today.  We decreased the steroids a little bit.  Checked his bloodwork. Got the first part of the flu shot.  And we haven’t received a phone call re: the lab results, so we can assume that all his counts are good. 

We are extremely thankful.  Timothy has been happy.  He has been enjoying visitors, since he doesn’t get to really go out.  If you are wondering… we are okay with adult visitors who are not sick.  But not in big groups.  Also if you’d like to visit, please get the flu shot.  We were all directed to get the flu shot this year for Timothy’s sake.  And it has to be the shot and not the nasal spray (nasal mist has live flu virus).  Thank you all for your love and prayers for our Timothy!

Here are some pictures of the kids.  Daniel finally took out his camera and decided to take some pictures :).  Enjoy!

Day +236

Tomorrow we head back to CHLA.  The BMT team wanted Timothy to get a consult with their pulmonary team.  The fact that Timothy’s still on steroids for his lungs is a mystery to the doctors.  He didn’t have any lung issues prior to the transplant… no asthma, no fungal lung infections (common to CGD patients), no pneumonia…nothing.  But each time Timothy was weaned off, his lungs had issues.  He starts laboring to breath and his oxygenation gets low.  The first time around there was fluid build up, but the second time around it was unidentified mass like blotch on the CT.  I am sure I am not doing justice to the medical terms in explaining Timothy’s condition.  So we’ll see what the pulmonologist says tomorrow.  He is too young for a lung function test.  It will most likely be just a consult.  Please pray for his lungs… Thank you.
On a side note, look what I have found:
His Grace Foundation
It’s a bit strange seeing Timothy’s face and our family on a website :).

Day +229

It’s been over 200 days.  It’s been a true miracle.  I need to count more of my blessings as I look back.  We have met and came into contact with so many wonderful people the past 2 years.  Timothy still has a long way to go, but we are on the right track.  As each day passes, chances of healthy, normal life increases.  We will also return to TCH annually… as long as necessary.  With BMTs, there could be long term effects… i.e. growth issues, sterility, to name just a few.  But for now, we are thankful and will count our blessings. 

Here’s our little man:

And his “crazy” sister :)…

We had a quick visit last Friday and his doctor was happy with his counts.  And we won’t be returning to the clinic until Oct. 8th!  Yay!

Day +219

We had a whole week of break from clinic :).  It was nice not driving out to L.A. every other day.  Today’s clinic was uneventful… this is the way we like it.  His counts and meds have been stabilized.  Praise God!  Lately, I can see that Timothy is physically feeling better.  More energy, more attitude and definitely more feisty.  He has been acting like a normal 2 year old and I feel relieved and happy.  We are continuing to wean his steroids and his cyclosporine.  It’s been a slow process, but we are definitely getting there.  These are his 2 major meds he needs to be off of in order to regain some sense of normalcy in his life.  Please pray that his lungs will be ready for him to get off of steroids.  I get very nervous because the last 2 times he was weaned off, he ended up in the hospital. 

As I look at Timothy… and Claire, I feel very blessed to be their mom.  They fill my Mlife with joys indescribable.  Such precious gifts!  I could never have imagined this bliss.  Only God knows how to give gifts beyond our imagination and expectation.  I love you, Timothy and Claire!

And of course, my awesome, supportive and loving husband… our fearless leader and strength of our family just celebrated his 39th birthday:


Here are some random pictures from the week… kids have been enjoying playing outside, especially Timothy.  Notice there’s NO ONE around, which means no mask :).

Claire doing her favorite thing with her favorite auntie:

And here’s our monkey boy after bath :).

Have a wonderful weekend!

Day +212

This week, we only had to drive up to L.A. 2x.  With every visit, there’s lab work.  As Timothy gets older, it seems like his veins are more accessible.  Only one poke today :).  And he never complains.  Never.  After we came home, we received a phone call from the nurse with his results… everything is great!  To hear those words, came instant joy and thanksgiving.  His sed rate is back to normal.  And the rest of his counts are good!  This simple and quick conversation completely changed my mood today.  Praise God!  Thank you, everyone for your continual prayers for Timothy and our family.  Thank you!

Here’s a video of Timothy talking… notice the squeaky voice?  It’s either this or a booming low tone.

Just in case you are wondering what T is saying… his response to my questions:

T:  me, too.  me, too.  see.

T:  yes.

T:  I play ipad.

T:  umma, see.  can’t see.

Another video:   Kids are singing “Jesus Loves Me”.  Notice Timothy’s mouth… how he accentuates the last word in each line.  And when he gets to the word “belong”, he tries so hard to get the word out that he ends up spitting :).

Towards the end of the song, he is looking at himself in the mirror when he looks away.

As for the rest of us, we have been quite busy.  Claire started preschool this week.  She enjoys school very much, but was quite tired.  With each drop off, I remind and repeat the importance of washing hands and not putting anything in her mouth.  I even tell her not to play with anyone who might be sick… maybe a bit paranoid?  And of course with every pick up, she has to wash up.  Here’s Claire at school: (and me in the reflection :))

As for Daniel and I, we were able to go out on a “date” for the first time in a long time.  We enjoyed a movie and dinner together.  It was nice just the two of us :). 

At the theater:

Dinner:

Happy weekend!