It was great :)

We walked the Liver Life Walk 2011 In Newport Dunes (Newport Beach, CA) last Saturday with zest and zeal! Our team of 22 were some friends, family and a wonderful little trooper, Seth's friend, Little Ms. M. She and Seth were on the transplant floor at the same time and ended up being transplanted about one week apart. The four of us, the parents that is, had immediate camaraderie and understanding with one another. It was a blessing. I often prayed for the other children on the "floor" and wondered about their families and what their diagnosis was. Little Ms. M and Seth had the same disease, Biliary Atresia. Both were in pretty bad shape just before their transplants.

We watched her parents wait anxiously in the waiting room as she received her transplant, waiting for word. The funny thing is when the transplant is happening, there are so many facets to the procedure. It is as scary as receiving news of the condition in the first place... it's also a blessing, as we know. But in that place, at that time, you have no guarantee that the body can endure the 6 hour surgery and then the repair and finally acceptance of the organ. While Little Ms. M was in ICU, we were moving into the transplant stage. We even had our little ones in ICU at the same time at one point. She was doing well enough and Seth was newly operated on. We would pass in the hall and share glances. Our hearts knew each other's hurt and fear as well as our joy and renewed sense of hope.

A bit of history to sum up one of the highlights of our walk for the Liver Fund. Team Seth Story raised $750.00 in less than one week's time more or less. It was fantastic and encouraging. If your reading this and donated on Seth's behalf, thank you, thank, thank you! We really want our family to celebrate life, not just Seth's life, but life as a whole, all of our lives! We shared with our other two boys that this is a celebration for us all! We went through trials and came out the other side- as a family. Praise be to God for this and I will continue to give Him glory. Apart from His grace and Mercy we would not have faired well at all.

A verse for you!
Psalm 148
1 Hallelujah! Praise God from heaven, praise him from the mountaintops; 2 Praise him, all you his angels, praise him, all you his warriors, 3 Praise him, sun and moon, praise him, you morning stars; 4 Praise him, high heaven, praise him, heavenly rain clouds; 5 Praise, oh let them praise the name of God - he spoke the word, and there they were! 6 He set them in place from all time to eternity; He gave his orders, and that's it! 7 Praise God from earth, you sea dragons, you fathomless ocean deeps; 8 Fire and hail, snow and ice, hurricanes obeying his orders; 9 Mountains and all hills, apple orchards and cedar forests; 10 Wild beasts and herds of cattle, snakes, and birds in flight; 11 Earth's kings and all races, leaders and important people, 12 Robust men and women in their prime, and yes, graybeards and little children. 13 Let them praise the name of God - it's the only Name worth praising. His radiance exceeds anything in earth and sky; 14 he's built a monument - his very own people! Praise from all who love God! Israel's children, intimate friends of God. Hallelujah!


With love, the Fong family

We're Walking!

This Saturday June 25th, 2001, the Fong family will be walking in the Liver Life Walk OC 2011! We were compelled to do this walk in celebration of Seth's success with his liver transplant and embrace our new lives on the other side of something that seemed so tragic. We are forever changed and hope we will be able to use this amazing story, "Seth's Story" to encourage others facing the same types of circumstances. This will be our first walk and we are uber excited to see what doors the Lord opens up for us!
Here's the link:
http://go.liverfoundation.org/site/TR/LiverLifeWalk2011/LiverLifeWalk?fr_id=2621&pg=entry

Will post back with celebratory pictures!
Lord bless you.

Psalm 34:1-7
1 I will bless the LORD at all times;
His praise shall continually be in my mouth.
2 My soul shall make its boast in the LORD;
The humble shall hear of it and be glad.
3 Oh, magnify the LORD with me,
And let us exalt His name together.

4 I sought the LORD, and He heard me,
And delivered me from all my fears.
5 They looked to Him and were radiant,
And their faces were not ashamed.
6 This poor man cried out, and the LORD heard him,
And saved him out of all his troubles.
7 The angel[a] of the LORD encamps all around those who fear Him,
And delivers them.

Reflecting Back...

Seth at Disneyland last week
Reflecting back at this time last year, we were well on our way to recovering from Seth's surgery {along with him}, but in no way had arrived to a place of comfort or understanding. I was smiling just moment ago wondering why I was so looking forward to this summer that's around the bend for my boys- for our family... It occurred to me that everyone is healthy. Seth's 2nd surgery has come to a close and is now behind us with nothing but possibility on the horizon. I am encouraged today as I watch my little ones nap and the serenity that fills our home- the smell of fresh baking cookies that I made with Max and the sense that all is well.

It reminds me of God's call to Be still and know that I am God {psalm 46:10}. Regardless of circumstance or situation, the sovereignty of God is always and has always been in tact and consistent. His Grace preserved us, His mercy was with us. We are not exempt from trial or hardship- that is not the promise. He is faithful to be with us- when we call on Him. I'm sure I could not have made it through this past year and a half without the Comforter, that is, the Lord.

May you be blessed today as you relax and rest with your families. Enjoy one another and speak words of love, encouragement and all that is good.


Now may the Lord of peace Himself give you peace always in every way. The Lord be with you all.
2 Thessalonians 3:16

Agape,
Sam

And so we begin a new journey...

I thought it would be a good time to begin blogging once again about Seth, life and all things relevant. This past year and a half {wow, has it been that long?} has whizzed by in a blur of business. Our lives are full, and so are our hearts. We have three beautiful boys, all healthy, active and well. Seth continues his medical care through UCLA with bi-monthly visits to the clinic where his progress is tracked and his medications are adjusted. As we shared in the past, Seth will remain on Prograf, an anti-rejection medication indefinitely. He continues to take magnesium, Valcyte and Mepron although at the end of the year he will be able to be evaluated to discontinue a few of the preventative medications. He is blessed to be on such low doses of Prograf which speaks volumes for his transplant success!

We have a few things coming up here in the near future, so if you've stayed with us for this long, we hope you'll add Seth's Story to your google reader for updates when an entry is made! It's a fantastic tool to organize your blog dailies and so forth ;)

Be sure to leave comments when you visit! It's a wonderful testimony to the prayer and support of this blog and a blessing for our family to know who you are! Will you encourage us?

With love and gratitude <3

Samantha

Seth's Closure Surgery

Back for an update :)
Seth had his hernia closure surgery April 21st, 2011! All went well and he is as strong and vibrant as ever. The UCLA hospital stay was as to be expected, daily blood draws, one too many catheters and vitals every four hours. The formalities in no way take away from the loving nurses and the hard working staff of doctors. Admittedly, there was tension at times, as to be expected. I'm always a bit over protective in the hospital settings, asking a lot of questions, scrubbing down the handles on doors and crib bed rails. Much of Seth's 7 day recovery at UCLA was spent with a DVD in hand and weening off of pain medication. Toys would last for mere minutes of engagement and the simple opening of the door would cause a terrible distress with Seth. We hope in years to come that all this will fade and never be remembered...
On the upside, there are people to thank- especially Seth's donor family, the doctors at UCLA, the medical staff and kind nurses. There is so much that goes into making surgeries happen, so many details and nuances.
We are thankful first of all the God above and all of our friends, family members, prayer warriors and supporters. Without you, there would be such a lacking strength of endurance.
We hope to update you over time here and there so you know how Seth is doing. You'd be amazed at who he is- I know we are :)

Love,
Sam




more here ------>
https://www.facebook.com/media/set/?set=a.10150235286561171.368490.741196170

Well friends...

...after prayerful consideration we have decided to end the blog entries. We are so thankful for the support in prayer and heart over the past year and treasure your commitment both to Seth and his health and to our family as a whole. Words are not enough to express how we feel, and the word "thanks" doesn't seem enough, but in our hearts, we are truly thankful to the Father above for all He has given and you are a part of this. God's graciousness has been shown by your love and tenderness and travailing along side us. We are forever grateful and touched...

We wanted to give you an opportunity if you haven't already done so, to comment as this blog will remain open and readable by our family and eventually by Seth. We want him to see that love does carry us through the fiery furnaces of life and when when we walk together, it's that much more bearable.

As it stands Seth's face rash has cleared up and we are steadfastly working on his allergies with our new allergist, so far, so good. We expect Seth's final closure of his fascia stomach muscle to happen when he's about 2 years old, so that's a way off, maybe beginning of next year.

We thank you friends. We appreciate you and we love you, whoever you are and wherever you are.


Agape, In the name of Christ...


Samantha and the Fong family
t h e g a a @ y a h o o . c o m

The Allergist...

...a recent visit to Chuck E Cheese with Sanitizing Wipes in tow!

We are just home from our visit to L.A. We went ahead and made a day of it, visiting family afterward. The boys are such troopers and waited patiently while enjoying an ice cream with their daddy, not to mention the secret passage way they found through the maze of flowers and filler!

Meeting with the allergist took some time as we had a lot of ground to cover. It would be hard to give a comprehensive digest of our exchanges, but a broad overview would say that we left there with a game plan. First, clear up Seth's poor little skin. The tactics we have been using just aren't working. Once we get his skin (cheeks) cleared up, something else bothers him and begins the cycle all over again. We will go ahead and treat him methodically with topical Tacrolimus which is the same drug they use for anti rejection for his liver. I had read somewhere in my studies that this is one way to address allergy prone skin or eczema outbreaks that will not subside, so it came as no surprise. On the subject of foods, we were encouraged to broaden his diet slowly, including foods he has shown reaction to, unless it was hive related. These reactions I'm speaking of are more related to redness around the mouth and cheeks. All in the name of exposing his system to more diverse foods to allow him to possibly adjust/adapt.

Understandably, I had taken it upon myself to keep any food from him that shown signs of reaction. Since that last episode of horrendous proportions, I had no intention of exposing him to scary foods as I had and have no idea what caused it. Not to mention the RAST testing (blood panel) that indicated allergies to specific foods. But RAST testing is not the end all, be all answer and is broad at best. That's why meeting with this allergist was so important in making progress...

All this seems so technical, but really, that is what it takes to manage Seth's condition(s). Life with this boy is very much ordered and rigid, yet in so many ways, we are free and always looking for the reprieve and lightness of it all. When the pressure is building and the task hard or complicated, the simple things become the joys. Watching Seth scrunch up his face and us giggling over it. Enjoying the children run up and down the hallway..one..two..three...chasing after one another. Pure joy. Looking into that beautiful, happy face and appreciating Seth for all that he is and thankful that we have him- knowing it could have been very different, but isn't.

I may be rambling tonight but I did sit through Friday traffic, twice, so I know you will forgive me! lol.

Have a blessed week in Jesus and thank you for praying specifics for us in this journey!


Agape,

Sam

Happy Saturday!

Hi... it's been a busy week here at the Fong house! Max has finished up kindergarten and we had a week packed full of parties, papers and of course, a cold snuck in there somewhere... It's been so nice to have my three boys home with me- I so miss Max when he's at school and having him home has been a complete pleasure. The three musketeers follow each other around with squeals, laughs and chase. Is there anything better on earth?

In my readings this week, I was so impressed and moved by this scripture, I couldn't wait to share it with you...

1 Peter 1:6-9
In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, 7 that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, 8 whom having not seen[a] you love. Though now you do not see Him, yet believing, you rejoice with joy inexpressible and full of glory, 9 receiving the end of your faith—the salvation of your souls.

That revelation? That is the certainty that with Christ we can endure and bear any trial and are they singular, no, there are various trials to be had... what is expected or required? Genuiness of faith.. and what proceeds from that, the revelation of Christ. Oh, so rich. and it goes on... the end of your faith is the salvation of our souls. I really love this. I am able to struggle and stretch and know that God is still on the Throne and Steadfast...

Seth has been suffering the past week with an allergic reaction causing him all over body itching and an eczema patch on each cheek that looks painful. He is on the mend as of today, as we have worked diligently to keep his skin hydrated, clean and cool. He has been up all hours of the night itching and scratching and crying out for reprieve- unfortunately we have had to break out the 1% hydrocortisone cream to calm the skin. We save it for really necessary times as the stuff is so terrible for you long term. We are interested in his immediate needs as well as long term!!! The source of the reaction is unknown at this point, so we are just careful to keep him on the very restricted diet and away from airborne allergens from bushes and trees (when we can). Alhtough today we did do a skin test with goats milk that failed. He broke out in mild hives in the area we touched the milk to. This is such a sad thing... we have very limited directions to go in regard to a milk substitute with the proper fat content for brain growth, etc, etc. I am still researching and it looks as though Seth may have all these other allergies as well as Birch Tree Pollen allergies. He has reacted to many of the fruits and/or vegetables on the lists. Our appointment with the allergist (again) is this coming Friday at UCLA. So please be in prayer for some direction and definitely for efficiency in having him tested. We are going to need to see a dietitian to help Seth have a well rounded, varied diet...

We hope your week is full of wonderful love as you celebrate Father's Day. Me, well, I am turning 35 this week and that does not scream excitement, I must say...


With love from us to you.


Sam

Babbling, Walking and Growing Galore!

isn't he beautiful?


Seth is so fun these days. Our little guy is growing up! He seems to understand so much these past few weeks and is excited about life! He squeals in delight when his brothers are playing and gets jazzed and wants to join in. Jack takes Seth around the house by the finger and engages him in such a sweet way. Did I ever mention how sweet Jack is? He is such a bruiser and a bit reckless but all for the glory of living out loud! That boy is so squishy and cuddly- it's an absolute pleasure! There are no shortage of kisses and hugs in this house...

It's been a quiet week medically. Whew! I like that. Sometimes it feels a little too quiet, but that is the pessimistic me that tries to creep in and rob me of the simple joys of just being.. content... still...peaceful. The "new normal" that I've written about? I think it may be here. Sure, the possibility of Seth encountering issues still stands, but not in our way. It has become a part of our everyday and we are seasoned to some degree to face whatever is before us. Can you say AMEN to that? Glory does not belong to us. We are mere sojourners on this path that lay before us... we are not alone and that feels good. Of course we have one another, that is the sugar-on-top, the real constant and steady flow of handling comes from He that is All... All in All. So, glory to God in the Highest. Let me say it again, Glory to God in the Highest. I know without Him I am not anchored or able to bear the load that sits before me at times.

Ephesian 3:20-21 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen

... and how does that power come to be within us? It is a personal, definitive concept and act that is being spoken of. It is by the indwelling of (don't you love that word) ...

John 4:13-16 We know that we live in him and he in us, because he has given us of his Spirit. And we have seen and testify that the Father has sent his Son to be the Savior of the world. If anyone acknowledges that Jesus is the Son of God, God lives in him and he in God. And so we know and rely on the love God has for us.

Rest here folks. Selah. This is so rich in its content that you could gnaw on it for hours and appreciate it indefinitely, oh yes, and rely on it forever. This is experiential and nothing can speak to it, but knowing it by living it. It is not elusive or some unreachable, unobtainable notion, it is the Word of God in all simplicity showing what is yours and mine to embrace- with simple faith.

Be blessed this week as you bask in His love and Spirit. Mucho love to you all... I always thank God for you and wonder who you are..

It's been a great week!

do you remember this photo? how good is God and thankful for UCLA and our donor family...


Well, whatever it was is really gone. The pediatricians are chalking it up to a plain old virus... Seth had labs on Monday and came back with flying colors! Isn't that great? No sign of foul play with the liver, so that was a relief. We went to UCLA today and visited with his doctors who marvel at how healthy and robust he is. We have a plan to meet with a different allergist, one that works with transplant kids. That way we can formulate a plan to get Seth eating a healthy well rounded rice diet.. no, I jest. A well rounded balanced diet that is vitamin rich and gives him all the calcium he needs too. In order to do that, we need to really ascertain what foods he can tolerate and which to steer clear of. Right now we are just really cautious with all foods that have shown slight to high levels of allergies. He's really into eating these days and can put away quite a lot, it's super fun to watch and enjoy. So, beans and rice and fresh fruits and steamed veggies... plus some chicken here and there. Shouldn't we all eat like this?!

We were given another 8 week reprieve from UCLA. That's how well our little guy is doing! We still marvel and bask in the wonder of this little child God has entrusted to us. It's not always easy and then sometimes it's really easy... we just walk by faith, ever believing God for Seth's health and life. We are in a constant state of faith as it is the only way to really survive this things, the highs and lows. And really, not just to survive it., but to find joy again. To live a life reflective of God's majesty. His grace and omniscience. We are forever in His care anyway, to be reminded of it daily or situationally is only an opportunity to appreciate what already is. God already is and always has been............ (you fill in the blank).

We rejoice today for the love we have in this house and family. For the friendship we share and the bond of prayer we share with you too. It's priceless and really, acts of Agape. You know that saying practice random acts of kindness? Well, I say, practice random acts of Agape... and maybe not even randomly but faithfully. It pleases God who is ever watchful in His kindness and love.


Be blessed this week as you seek God's face...

Much love,

Sam

We're tired!

Coming off a long week of Seth having an undiagnosed fever. I will have to be brief as the little guy is still under the weather and is giving me a rare break in these few minutes... I will be sure to enter a post in the next few days though and have more information as well. Seth has a blood draw on Monday to check his numbers in reference to having decreased his Prograf medication. Maybe it will reveal why he's been so sick, or we may just have to chalk it up to Roseola although he didn't have all the symptoms.

Will check back very soon...

xoxo Sam

Hello!!!

Happy Saturday! We've had a wonderful week here at the Fong homestead. Seth has been adjusting to his new eating schedule, or shall we say I have?! We are adjusting to rice milk, proteins, fresh fruits and veggies and Seth is responding well with limited eczema outbreaks and minimal hive reactions. We are still trying to come to terms with why the hives come and go and where they stem from, but will do our best to avoid all foods associated with his sensitivities as well as spread out some of his medications.

A praise report is that Seth's doctors have decided to cut his main immunosuppressant by 1/4 each day! This is the drug he will remain on indefinitely... we are so pleased with his progress and thankful too! He amazes us with his tenacity and eager spirit to learn and walk and play.

Please be in prayer for a potential ear infection as Seth is running a low grade fever as of this afternoon. We are hoping for the best by assuming it's an earache/infection and will call his on-call liver doctor if any further changes appear. Other than that, he's his happy little self! You can imagine the fears we face when any glimmer of sickness appears, but we will hold out for the best case scenario and wait on God for peace.

We had a wonderful day at the ocean today. Seth experienced the beach for the first time and absolutely loved it. We were excited to see a pod of dolphins swim near the bodyboarders and a helicopter that flew in to try to shoe them away. The boys thought that was fantastic! Rocks and sand and beach and dolphins, yes, it was a nice day today, that's for sure...

We have had our longest stretch to date not visiting UCLA and are scheduled for the 3rd week this month, May 27th. Looking forward to hearing Seth's progress from their point of view and getting a wonderful report. Thank you for visiting us this week! We appreciate your prayers and love...


Sam

Allergies it is...

Well, the worst is true in light of allergies. Seth is severely allergic to milk and eggs, oh the eggs were off the charts! Along with that, he is allergic to wheat and mildly to peanuts and soy. Cats and dogs have made the cut, so Seth will not be deprived completely! I jest, but really, this is no surprise to us. We could see his reaction months ago, especially to dairy and somewhat to wheat with mild reactions on his cheeks after eating. Hives are a mysterious thing and cannot directly be detected after the fact, so we will never definitively know what happened just one week ago. In my opinion, it was an over abundance of wheat in that one day. Wheat is found is almost every product we consume it seems! Read your labels, you'll be surprised...

The allergist asked that I also keep from consuming these foods while Seth is nursing, oh my goodness. We have minimal directions to go in the way of a rich milk alternative that would satisfy his growing needs, so this will be another journey of discovery and learning. Anyone know of wheat, dairy and egg free diets please comment and let me know! We will need all the help we can get on this one too. I think we may be relegated to chicken, rice, fruits and vegetables. this foodie is not exactly "feeling" that. But, whatever it takes to keep Seth safe and happy. He has been through so much and I am constantly amazed at his resilience. I know I've shared that many times, but it is so very true and worth repeating time and time again.

Our little guy is an official walker these days. He's happy to hold and finger and pull you to the right or left, but it just makes us giggle in delight to see him get up teepee style, stand and then walk off to whatever he has his eye on {{which these days is anything resembling a ball}}. What a guy.

I have been so grateful and mindful of the miracle that Seth is these past few days. I guess when it's time for his blood draw at CHOC, my heart feels the heaviness of the possibilities and I wait with baited breath for results. These tests have become my friend and somewhat of a solace as weeks pass and we go on about life with it's new rhythm. The new normal, remember that in my previous posts? I'm compelled to state that the Lord is my true solace, not results, but the evidence here, on this earthly plane does help on how to seek Him, although I am faithfully praying for miracles and His hand in all things, always ; ) I am constantly reminded by Seth's "condition" that my need for Christ and His loving hand is an essential part of my existence. As if it weren't true innately, but being in this place of need keeps me close to the Master's heart. I can find the blessing in this health issue and rest easy in God's provisions and helps. It will be our job as parents to Seth to teach him to do the same. Rest in God's hands, trust him for your body, mind and heart and lean not on your own understanding, but seek Him in prayer and supplication. He is good and faithful and has been thus far, and I know, I know, that He will continue to. It reminds me of that Footprints poem (a variation):

The Song Footprints in the Sand
by Mark Hargrave

One night I dreamed of walking along the shores of different lands.
I could tell that You were with me by the footprints in the sand.
As I gazed upon the heavens, I saw pages of my life.
It was then I realized that You remained there by my side.
When the clouds began to gather and the rains came falling down,
I looked to only find one set of footprints on the ground.
I said, "Lord, why did You leave me in the troubled times of life?
I believed that You would always walk beside me day and night." (Then I heard:)
"My precious child, I'd never leave you.
I have carved you on the hollow of My hand.
It's then I carried you in My arms,
When you see one set of footprints in the sand"
Dear Lord, will You be with me as I travel through the years?
Will You be there in the struggles? Will You wipe away the tears?
As my eyes turn toward the ocean and the shores of distant lands,
I'm still thinking of the single set of footprints in the sand. (I heard Him say:)
"My precious child, I'd never leave you.
I have carved you on the hollow of My hand.
It's then I carried you in My arms,
When you see one set of footprints in the sand."
Will I hear the angels singing, as my life comes to an end.
Oh Lord, I long to see You. Will You be there once again?
My eyes turn toward the heavens, along the path of foreign lands,
Once more, I'm thinking of the set of footprints in the sand. (Jesus said:)
"My precious child, I'd never leave you.
See your name carved on the hollow of My hand.
I'm here to carry you to your home.
You will see one set of footprints in the sand.

Whew....

yesterday at abt 5pm...



this morning...


thank you for your prayers if you heard on facebook


Was a hard day yesterday. Seth had an allergic reaction to what? We're not sure yet...

Gonna skip the blogging today and rest. He's feeling much better and we see the allergist this coming Friday- the appointment was already in place, but now we can't wait! We need to know how to keep Seth's health at it's best.

Happy Saturday!

daddy and Seth at the park

Good morning friends. It's been a wonderful week of normalcy! No doctors or appointments with doctors... life is moving along nicely. Seth is teething so he's been uncomfortable with minor congestion, but we are not complaining! Just soothing hugs and lots of distraction. Seth is still walking along with us by a finger and he seems quite content to do that, so no independent walking as of yet, but that's fine! Once he's up and going, that's it! The babies in our family will have passed wonderful milestones never to be seen again. We will savor them until then...

Seth has an upcoming appointment with an allergist. They will run blood tests to determine a general sense of his allergies. We are careful to keep dairy, nuts, strawberries and other major allergic foods from him until we know how he might react. Hives with dairy was enough to make us more than careful with other allergy foods. So his diet is still quite limited although he loves fruit as you can imagine. A banana within site must be his! He insists on it!

A fairly low key week, but rich in love and adoration of our three little guys. They bring us such joy and happiness. We are so thankful and are so blessed to raise them, love them and cuddle with them. God is good.

Good morning friends! Busy day with Max's school fair. Daddy committed two days to burly labor and the day went really well. It's awesome to see a body of people come together and make something special come to fruition. It reminds me of this verse:


And let us consider how we may spur one another on toward love and good deeds. Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another... Hebrews 24-25a

When we make time for one another under the banner of Christ, In heart and deed, the fruit that is born of that time can be so rich! I remember while living at UCLA the thing I missed second to my family and home was fellowship with the saints. I needed and wanted to be with people who could pray for me and weep with me- to bear with me while under such distress. I know that as we invest into one another, the depth and growth can be marvelous. I believe the way to achieve this is by sincerity and a genuine heart. No holds barred. It's good to be home and draw on that strength. God made it a point to direct us to one another. Thank you for being with us...

Seth has had a great week. We are currently trying to work out getting state financed for his ongoing health issues. The bills that come through are ridiculous as you can imagine. One medication is over $1000 and another $600 per month and he's on 5 medications! We're grateful for our insurance, but the rates are being raised $300 more per month! So yes, we will have to apply for assistance. The bills get out of hand! I think I last tallied the UCLA surgery and stay it was just shy of one million dollars. I think I just digressed!

So Seth will go to see an allergist soon. We are trying to work out the details for when and where. His reaction to milk products is still sensitive, so we want to ensure we never put him in danger with nuts, strawberries, etc. Obviously we won't do the "poking" allergy testing, but rather a blood panel to deternine what he may or may not have an allergy propensity toward.

All in all, our little guy is growing up just great. He took his first steps this last week! He hasn't since, but that's okay! He can and that's what's really wonderful. He walks around holding a finger and we let go here and there... his balance is great! We have yet to capture it on camera...

Well, off to church! Hope your week is wonderful and rich. If anyone wants to personally email, please do so at thegaa@yahoo.com and I'll be sure to email you back. Questions, comments? I would love to hear from you!


Agape,

Sam

Seth loses 2 meds and adds 1!

We are happy to announce that Seth will go off his Ursodial (addresses stomach ulcers) as of today. He has also been taken off the Bactrim that has been causing him such severe reactions each weekend and add back a different prophylactic antibiotic to replace the Bactrim to see if Seth responds better. This is great news! He is not missing the Prednisone steroid at all and his height has resumed moving upward on the growth charts- there is a marked difference in just 4 weeks! Although Seth's height is at the 35th percentile, his weight is at a good solid 50th. Our boy loves to eat!


Clinic was this last Thursday and Seth's labs came back "amazing." They like to use super expressive words when speaking of blood panel results and liver function. I like it! It's such a wonderfully positive way of saying "your child is doing well and this foreign liver is doing its job faithfully." Its always nice to leave bright and early in the morning to avoid all the Los Angeles traffic. Twenty minutes makes all the difference... and when I say it's nice, I mean I love not sitting in traffic, so I'll force myself to get up at 5:45am and get out the door by 6:05. Waking at 7am seems reasonable with children, but when you say 6am, yuck. No, I don't love waking early. Nope. Uh uh. {{wink}}

This past week I have been thoughtful about the gift that life is. The simplicity of we all live, we all pass away. That in this life, it is something we all share and no one can escape. It puts so much in perspective...
How do I want to spend my time?
What a blessing to have a family with so much love.
Look at those precious faces who look to me for hugs and kisses.
What am I doing to further the Love of God and share that Love?

It all seems so clear when we can simplify the meaning of our existence. Not to say the above encompasses all of what fulfills, but the key word, the key concept and act would be LOVE. Not a self serving kind of Love, but a selfless gift. We all innately move toward love, want love and love to love, so it seems so simple. Know where this love extends from, be sure to pass it around and give it selflessly and abundantly. It is without limit and boundary.

Happy Easter!

Happiest Easter to you all who follow this blog. For us, this is such a special time. A time to remember the sweet gift given by Jesus as He died on the cross and rose again as our propitiation...

Main Entry: pro·pi·ti·a·tion
Pronunciation: \prō-ˌpi-shē-ˈā-shən\
Function: noun
Date: 14th century
1 : the act of propitiating
2 : something that propitiates; specifically : an atoning sacrifice

I love it that we get to celebrate Jesus as well as Seth this week. Seth turned one last week and we celebrated his birthday with aunties and uncles and close family friends. Without Jesus, I am sure we never would have made it this year past year. He has been our strength, our direction and compass. We are ever thankful for the fortitude given, the perseverance to endure and recover alongside Seth and our family. Never has life seemed so vulnerable and precious at the same time. We are ever mindful of our temporal existence here on earth, It really intensifies the heart (as if Oden and I needed to be more intense {{wink}}).

Seth was taken completely off his Prednisone this week. This medication is what makes him immune suppressed along with the Prograf. This is a really big step in Seth's journey. To give you an idea of how this medication plays a role, If a liver transplant patient ever rejected, the first course of action would be to address the rejection with IV Prednisone. It shows me how far Seth has come and the possibilities of how far he will go with this new organ. Seth has only missed 2 doses to date, so we are yet to see many affects of withdraw.

I often wonder about the child who lost his life and gave Seth life. What his parents must feel. How they have touched our lives and have no idea to what point... Blessing, dear God, on them.

We do hope you enjoy your Easter celebration and hold those precious to you close and near. Please be in prayer for Seth's medication change(s) and calmness of spirit. We have a clinic visit this Thursday with a new blood draw lab, sp prayers for this would be appreciated too.


Much love friends,

Sam

Happy Birthday Seth!

It's been a tough year.. a tough year for Seth as well as for us. We have cried and mourned dreams. We have struggled through Seth's physical pain and reveled at his recover too. We have marveled at the love and support that has been poured out for this little boy, this miracle baby. Did you know he was a miracle? I mean, by all accounts, we all are miracles, but Seth in particular was a child born of prayer and purpose.

I always saw myself with three children, although I had a tough time conceiving and wasn't sure of that likely hood, it was what I saw as a little girl growing up and then as a woman married to the man of my dreams. After a moderate amount of medical intervention, planning and prepping, we conceived Max in 2003 and were elated at the possibility of parenting after the uncertainty of being able to in the first place. Following the same procedures, with moderate intervention, we embarked on a second try and conceived Jack in 2006. Were we content, yes! We had both considered the idea of one more baby to love, a girl maybe? But were also keenly aware that we were committing to more college funds and all the ideals for one more! The idea of another was overwhelming, but so was the desire for a little girl. This is how it went... "Lord if you want us to have a girl, please allow Sam to get pregnant miraculously, without intervention or medical help." About two to three weeks later I was pregnant. Oden told everyone it was a girl, because that what we prayer for. I find this funny now but at our 18 week ultrasound, you could imagine my surprise...

You see, Seth wasn't planned by us. We planned the other boys and worked hard to be sure they would happen. Seth was prayed for and given. He was intended with purpose. He was a miracle conception in spite of my physical limitations. Isn't that cool?

Behold, children are a heritage from the LORD,
The fruit of the womb is a reward.
Like arrows in the hand of a warrior,
So are the children of one’s youth.
Happy is the man who has his quiver full of them;
They shall not be ashamed,
But shall speak with their enemies in the gate.

Psalms 127:3-5

Seth turned one this last Wednesday, March 24th. He is changing so much these past weeks and becoming quite the little man. He likes to talk and squeal and has a wonderful awareness of what's happening. He understands NO and MORE and KISS. He is such a jewel and a pleasure to watch, so full of life and energetic. We marvel at him, we really do.

Happy Birthday Little Man...we love you so very much.

Happy Saturday!

Well, here we are on Saturday for a change. I believe it will suit us a wee bit better as church is happily filling our Sunday's these days. Enjoying it very much and so glad to see my fellow Saints in Christ! It's amazing how you hunger for the fellowship and a good Sunday morning message when away... the worship isn't hurting anything either! ; )

I've been cheerfully seeking the Lord in the book of Ruth this past week. I love the book of Ruth. It's wonderfully reflective of the devotion we are to have for the Lord. For promises and hope in Christ by waiting on Him. I woke up the other morning with a thought: "Kinsman Redeemer," so I know the Lord has a richness to impart as I search Him.

The gift about suffering is that we are ever present with the truth that we need God to restore, to deliver and to redeem. This innate truth stands anyway, doesn't it, but when suffering brings you to your knees, you are ever aware and keen.

Seth has had a very good week. His ear infections have cleared up and he is back on the go! Another blessing is that UCLA called midweek and decreased his Prednisone by half. They asked us to give him the same dose, every other day, rather than every day. We were ecstatic as you can imagine! The Prednisone is a major immune suppressant, along with the Prograf. Seth will be weaned off the Prednisone over a long duration of time and the Prograf he will remain on indefinitely, although the dosage should decrease in time. The UCLA team says Seth is on a small dose as it is so that was good from the get go.

We are still trying to define Seth's food allergies. I've been introducing dairy products here and there and taking notes. It seems he will not be a dairy kind of kid as he breaks out in hives each time he is given some. We tried a sliver of cheese and plain yogurt a few times with the same results. The hives are small, but very much there... We have yet to introduce soy, but will try that next. Right now milk is not necessary for his diet as he still nurses, but we will need to find a suitable source for him in the coming months. Since food allergies aren't an issue for either of our families, we are leaning toward believing it's the medications, specifically, the Prograf. They are still discovering the side effects of the drug, so this may fall within those parameters. As it stands though, Seth has an insatiable appetite!

Well, I'm off my friends! Would love to hear from you who follow! Leave us a comment and your name too!


Agape,

Sam

Entries Will Move to Saturdays!

It's been a fair week all in all! Seth's ear infection is still pending as far as improvement goes. He seems much better, but we are off to the pediatrician's tomorrow for a final say on more antibiotics, or that he is indeed healed and well. I of course am holding out and praying for the latter! Seth has been up and down this past week. It seems he's beginning to recognize that laying down at a physicians' office means a shot or entering a doctors office means he'll be poked and prodded here and there. He's beginning to protest and understand... Boy, not looking forward to more of that!

Clinic was hard this week. Seth had a round of immunizations on Wednesday as well as another intra muscular antibiotic shot that same day and then off to clinic on Thursday for his two Synagis injections in the thighs too. POOR GUY! By the time he was able to see his liver doctor, he was beyond tears. Just taking off his clothes was upsetting to him. I cried all the way home and we both felt much better when we got here...

Seth will have a blood draw tomorrow at CHOC along with his ped. appointment in the later afternoon to check his ears. Right now it seems we are seeing doctors left and right. We're looking forward to the reprieve the next few weeks will bring between clinic visits!

On a happier note, Seth has his upper two teeth in and is now getting two more up top!. He has begun to walk while holding our fingers and never tires of it. If you try to let him go, he eases himself down to sit. We just have to work on that balance! I know his progress isn't too far behind, so I'm super thankful for that. He's an independent little guy and beginning to make it know too. He's very expressive! He will have to be tough with all the procedures he goes through, so this is not only expected, but Oden and I are glad for it. Seth's life will be different and we can't protect him as we did the other two boys- not in all the ways we would like to. He will have to endure and learn to push beyond doing what he wants, and come to a place where he does what he has to.

Much love friends. Thanks for checking back with us. I will need to move the entries to another day of the week as Sundays have become more busy as we attend church these days.. YAY! So, let's aim for Saturdays!

God bless you and keep you. Make His face to shine upon you... (I borrowed that : )


With love,

Sam

An ear infection is all...

Thanks for checking back! Seth had an ear infection this week as of Friday. It comes on the heels of the cold we all had as a family these past two weeks. Bummer...

Friday afternoon Seth was fine, went down for a nap and woke up in horrible pain. He cried from about 4pm to 9pm with small naps in between. We were obviously in such turmoil wondering if we needed to call UCLA. Wondering if he was a rejection episode or what!? We were hoping he had something minor like an ear infection as he pulled his ear twice after his nap. We were hoping and praying, but the places your mind and heart go to when you can't pinpoint the problem is horrifying. We were really scared. I took Seth to our local pediatrician here in Huntington Beach for a 5pm closing appointment- very thankful for that! By 6:30 we were able to see the doctor and she confirmed an ear infection. Of course, I was hesitant to just believe that because I am a bit of a worry wort to tell you the truth. BUT! When I was messing with his ear, he was less than happy, confirming it to me as well. We were in constant contact with UCLA just in case and I wanted to make sure the medications were compatible as well. He was put on another antibiotic and his ear has been fine ever since-- what a little miracle baby. Although, the diaper rash he's getting is starting to get to him, so we're working on that with acidopholus and a lot of fresh air to the tooshie.

We will have a trip to UCLA this Thursday, the 11th, for Seth's monthly visit. He will need to go back to get a blood draw this coming Wednesday for his panel as well. Last panel that was drawn just came back with flying colors! So the decrease in medication was a success! Yay!

We are ever mindful and thankful to the Lord for Seth's life and his continued recovery from liver disease. We praise Him for the life of this precious miracle baby...

Thank you for sharing our joy! Seth will be one at the end of this month! What a wonderful celebration...

A Week of Sickness...

Well, the cold hit our house and we all got it, including Seth! We have all had low grade fevers but Seth somehow seemed to escape it. So, Seth is coughing along with us and I'm chasing his runny nose. Luckily the cold seems more mild than it could have been, so we will count our blessings. Since his Broviac line came out the idea of a fever is not as menacing as it used to be. He would have been treated preventatively with that line, so now there is more wiggle room with fevers. It makes for a less stressful time, that's for sure...

Seth had a blood draw this last Friday to check on his "numbers'" due to the decrease in Prednisone and Prograf these last couple of weeks. We're really looking forward to getting the results and having a praise report for you in the next entry! I will be sure to let you know. It's so wonderful to have any progress and allows for healing and restoration. It has been very nice to move along with life, ever watchful, but a bit more relaxed.

Seth's milestones of late are:

eating whatever he can get his hands on!
swinging in the safety swings at the park!
surfing the furniture and climbing into laundry baskets!
saying Ja... which is Jack ; )
getting his top two teeth in (well, almost)!

...and many more to come, we're sure.

I'll sign off for today as I'm exhausted! We took a walk in Central Park today away from others, just for fresh air, and it took every ounce of energy just to get back to the car.... whew!


Agape friends,

SAm

Happy Sunday To You!

What a happy baby we have here these days. It's always been his nature to be cheery, really, but he's so interactive and engaging right now, we're having a blast! Seth has finally began saying "mama," adding to his repertoire of daddy, eee! and miscellaneous babblings. If we ask him where Jack or Max are, he quickly turns looking for them. They really are his super stars right now.

These days life seems to be about settling in. The fact remains that Seth had liver disease, that he will still need his abdominal muscle closed in the next year or two, and that our lives took a turn we could have never imagined, but we are all recovering it seems. All of us. Of course there are so many other things in between, but the gist of it is that life really does move along and get better. We watch our children grow in amazement and appreciate the time we have to enjoy them. The things that seemed to be hard are no longer so mountainous in respect to life and all its going-on's. Love abounds and appreciation too. That is a gift we can walk away with...

I was touched by a verse I read yesterday, Psalm 50:15:
"Call upon me in the day of trouble; I will deliver you, and you will honor me."

I was considering how Joseph was thrown into an empty cistern by his own brothers, sold into slavery by his own brothers, and ridiculed and mocked by them too! (Gen.37) He suffered. God blessed him further on into the account with favor, but his heart had to be steadfast for God for the Good to come forth. He had to hold on tight to what He knew was good. He suffered many things that seemed unjust, but He stood, foot planted for God. I do not think this makes people exempt from the emotion of injustice, due to the humanity thing {{wink, wink}}, but I do think we press on, move past what we think and holdfast to the Truth that God is love and loves us.

I am so thankful for jewels of wisdom in the Word of God, the Bible that is. We are not without a covering for all of our heartache and pain. I know God is with me and has been with me. I know he's with Seth and has continued with him as well. It's a comfort and the thing that really matters most.

Please be in prayer this week for health in our household. Max has a mild fever of 99-100 this weekend, with a cough coming up. Please pray for Seth that he would remain free of the bug as well as the rest of us!


With love this week from our home to yours!


Sam

What a week!

Seth at 6 days old...

We have progress yet again! Seth's lab draw went quite well on Wednesday last. I actually happened across a review in the OC Register of all things while trying to find a map layout of CHOC's Outpatient Pavilion! What are the chances? The ad reads, "The service was excellent, but best of all was the phlebotomist named Sima." There are no other reviews, just that one. So, we got up early that morning to avoid traffic and headed off to CHOC (we have never been before). When we arrived, we pulled into the wrong parking structure and were told to go to another one, then had to take one elevator to get to the other one. by the time we arrived to the 5th floor, I was examining the elevator and wondering how in the world a little hand gets stuck in there (for more on that story scroll down to Seth's release date!)? Well, by that time, you can imagine, I was beginning to melt down a little bit. I'm not sure if it's because the door said the lab wasn't open yet (even though I tripled checked) or because the cries of doom were coming- that would be the blood draw. But the eyes were welling with tears and I knew I couldn't stop them. So, I cried a bit. It was an excellent release as I cried out to God, and then, wiping the tears away I headed back to the elevator to double check the lab suite number at reception once again. Well, lo and behold, I was sent to the wrong floor and the lab was "over there, just around the corner of that wall." Eureka, I had arrived.

Going in the people were so nice and the premises clean! Very nice in comparison to UCLA, which I love a whole, but their premises outside the hospital is so very NOT clean- quite honestly it has the feel of a free clinic. I'm not sure why that is and have mentioned it to my coordinator before kind of in jest, but nonetheless, it's kind of icky- especially for immunosuppressed children. It's a bit surprising.

Anyway, I requested Sima, as referred, and she was great. First try and she was done. Very sweetsie Persian woman who embraced Seth as her new grandson. It was a pleasure to be in and out and get home. I always want to get home after clinics- it just feels safe. Seth was atrooper and cried, of course he cried, but was perky in no time. Astonishing...

The next morning, we were off to UCLA where my paperwork was lost again, why break the long standing record? I joke, but the clinic went well. I was able to see one of my fav doctors and he was gracious enough to answer a lot of my questions about what Seth can and can't do. Can he play with other children, how susceptible to viruses is he? etc. etc. I left there feeling a lot more relaxed and educated. Dr. V dropped a preventative med Seth was taken for potential thrush and talked about decreasing his Prednisone! Excitement! All in all the day went well. Did mention Seth had to get two shots of Synagis? He was amazingly resilient and cooperative too. Poor little guy...

We received a call the next day lowering Seth's Prednisone by half! Half! WoW! They also decided to decrease his anti-rejection med by a minimal margin, but less is great! This is progress indeed!

So, this is a wonderful week for us in the Fong household. We see light on the horizon of this dark past year. We are all recovering and improving, all of us. We thank you for your prayers and heart.


With love,

Sam

p.s. happy valentine's day

Voila'! The Lord has shown me a bit to share...

I was intensely seeking the Lord on what I might share while blogging and I have written and erased so many entries, it's terribly embarrassing. I was attempting to put words to the intimate things that I've sought the Lord on that He hasn't chosen to answer yet. Do you know what I mean? When you seek the Lord, then try to put words to it and it doesn't come out right? What I have learned is that It's not for others at that time... I have faith that the Lord will reveal things to me in regard to my understanding of "answered prayer," until then, I am content to rest in Him for His mercy and grace. This is a time of deepening for me as a woman of faith, as a mourning mother and as a child of the Most High God.

But! Today as I was reading Matthew, He imparted to me wonderful things regarding the WAY we seek Him. This parallels the seeking that I am doing with the Lord. How do we approach Him? Do we feel entitled to the things we pray for? What about the verse that says "pray in faith believing"? Oh boy, we could really do some exploring here.

Jesus Cleanses a Leper: Matthew 8

1 When He had come down from the mountain, great multitudes followed Him.
2 And behold, a leper came and worshiped Him, saying, “Lord, if You are willing, You can make me clean.”
3 Then Jesus put out His hand and touched him, saying, “I am willing; be cleansed.” Immediately his leprosy was cleansed.

When we approach God prayerfully, approaching Him submissively, as servant and Master, proper perspective and right order are in place. When we say "if you are willing" are we not then trusting Him to have a "hope and a future" (Jeremiah 29:11) for us? Entrusting all of our hopes and fears {{and leprosy}} to Him? That includes sickness, the lives of our children, our dashed dreams, etc. Who are we to take back the reigns and seek to better our lives by toiling and plotting? Why would we. Why would I. Because somehow we feel entitled to specifics if we are good and serve the Lord, If we become Christians and live a life set apart for Him. Well friends, our good is in Heavenly places. While we are here on earth we will have to experience the frailties here within. I have to remind myself of that time and time again... and of course, it seems He is reminding me of too. Thank goodness.

If you read on in Matthew 8, you will see how the Centurion approaches Jesus and how blessed Jesus was by it. Our hearts are forever in the forefront of the Lord's mind. What condition is our heart in and how do we approach the All Knowing God?

Hope that blesses you as much as it blessed me. I'm thankful the Lord showed me something to share where striving was no part of it! I was up the majority of Sunday night thinking, oh no, Sunday is passing what about my entry! Praise God, His timing is good...

For this mornings post, scroll down to the following entry!

Have a blessed week our beloved friends.

Love,

Sam

Happy Sundae into Monday...

{{grandma reads to Jack and Seth}}

It's been a fun week with the little ones! Seth has begun to wave as well as become very verbal. He calls and sings out Da-Da-dadadada! As if he could get any happier, he has. What a fun stage we're in with growth. The other two boys are doing great as well. Life goes on in some ways as if nothing ever happened...

Seth has his first intravenous blood draw this week. I was able to arrange having his blood drawn at CHOC in Orange on Wednesday and then off to clinic as usual Thursday. This will be so much easier on both of us, I think. The anticipation of sitting in that busy lab in L.A. and then going and waiting to be seen in clinic was an overwhelming thought. To break the days up seems like a good plan and less stressful at that! Looking forward to a healthy response from the doctors and an efficient visit?!

Will continue to seek the Lord on the inner workings of my heart and see what He shows me to share very soon...

With love,

Sam

Happy Sunday!

Good afternoon friends! We just got back from church and lunch with daddy afterward. It's so good to be in the presence of worshipful music, a nourishing message and fellowship with the Saints. We are approaching church cautiously of course, keeping a good distance and keeping Seth from touching or being touched. This is sure to help ward off any potential germs that could cross- we never know we're sick until the cold or virus is already established, so preventative measures seem prudent. Of course, keeping Seth from crawling around isn't easy, so I gave him free reign and was sure to wash his hands well here and there as well as keep those cute little fingers out of his mouth! He had a great time today and I was actually able to listen to the message! It was great...

We went for 10 month pediatrician visit Friday, just for a well check (this was his regular ped, not liver). He measured out once again at the 50th percentile for height and weight- not bad for a baby recovering from such an invasive surgery! All is well with his health otherwise. We have a liver appointment coming February 11th for his liver clinic. This will be his first intravenous draw before the doctors round on him. As Seth gets older he seems to remember much more, so I'm obviously not looking forward to holding him while they attempt to access a vein. God will have to be our strength as the anticipation is heavy enough. Please pray for a pediatric phlebotomist and ease of finding a good vein. So graphic, I know. This has been Seth's longest hiatus for a blood draw, it will have been 4 weeks by the time we arrive at clinic date. Otherwise, he has been checked at least every two weeks until now. This is a great sign of Seth's progress!

Well, we'll sign off for this week, but will check in with you next Sunday for a weekly update and prayer requests! Thanks once again for your continued support- it means so much!

Agape,

Water Play!

Yes, the removal of the Broviac went very smoothly! We're so glad to have it gone and don't miss it one bit, no sir! Seth can crawl around with ease and I'm not constantly shadowing him to be sure he's not pulling the fragile line along too. Good thing, because this boy is on the move! He is so fast now and trying to keep up with his big brothers, it's really amazing and truly exhausting!

We were instructed to simply keep the area clean and dry so it can heal, and were given a 2 day window before bathing. I cautiously waited a bit longer as you can tell. The area is not looking great, so I watch it carefully, but thought it was time to get that boy in the water. Healing will inevitably take time- so we will keep it dry as much as possible and open to good "ol air.

As you can tell by the video/photo, Seth REALLY enjoyed his bath. We knew he would! He was so upset about getting out, even with quivering lips from being cold. It was precious. He smacked the water and would look so surprised when it splashed up at his face, then do it again and again. I think we have another water baby on our hands!

It's a rarity to see the surgeons these days as we have more of a routine type visit when we go to "clinic." So it was nice to see a face that we saw so regularly not so long ago. The surgeons are the true heros, the ones who do all the steady work and the problem solving. Dr. D reminded us to keep talking to our clinic doctors about the repair of the abdominal wall in about a year. So it should be just shy of Seth's second birthday that we can see him make a full recovery and go on about his life in what will be normal for him. We are looking forward to that day and we also remember all too well the fears that accompany surgery. It's an emotional scar that runs so deep and for Seth, well I can't even imagine. We just marvel at him.

Please remain in prayer for Seth's health, that his line entry point would heal swiftly and without infection. Seth has been very upset the past two days, so we worry, but we also know he's drooling and showing signs of teething again. We still battle with the hives issue everyday at some point, so prayer for resolution on this would be great too.

We will check back in with you Sunday, barring any unforeseen circumstances and thank you for your continued support and love.


Agape friends,

We're home...

The line is out! All went very well... catch up in the next few days. We're tired!

Hello Monday!

Sorry for being a day late with a post! We are creatively trying to keep the children entertained while it rains and they're cooped up in the house- well, that and I've been cooking like mad. Cold weather makes me want to bake and make soups!

Seth has been on a new oral medication that has replaced his IV!!! This has been a wonderful improvement to our days. I used to have to time the IV to his AM nap to make sure he didn't pull the IV in his sleep and then wait it out after he awoke as his naps were never as long as the IV took. So, onto brighter tomorrows! We have an out patient appointment for Seth this coming Friday in the early morning at UCLA. He should get his Broviac line removed barring any obstacles in the coming week. Our household was hit with another cold this weekend and Seth and I seemed to have gotten it too. It's mild, thank goodness, and we are on the mend, but Max had initially gotten a fever, so you can imagine the first day or two with paranoia- especially with his upcoming line removal! I have yet to talk to the doctors at UCLA to let them know Seth has a very mild sniffle, so we will hope and pray that all moves forward as planned. Whatever is safest is best, so we will take it as it comes. We have had to learn to just accept circumstances as they are and allow God's peace to be enough. My wonderful husband is always reminding me that all we can do is our best and that helps put things back into perspective. Children get sick, so it is par for the course.

In the meantime, I continue to "flush" Seth's line daily- which means I run saline and Heparin through it once a day to keep it viable and clean as well as change his dressing and cap weekly until the line is truly removed. We are close, are we not!?!? I was daydreaming of Seth having a real bath the other day. I know I've told you before, but it means so much to me and I believe he will love it too. I actually filled up a container of water yesterday while at the kitchen sink and let him play. He approached with caution as he submerged his hand and then all the sudden, he started splashing and getting really wild about it! It was fantastic! I hadn't realized that I haven't given him opportunity to experience water before that and how much he really liked it! There are other things that he has yet to experience that I look forward to... sand, snow, other children. He has been sheltered from so much, that life has been limited for him. I look forward to this changing in the coming months and then years.

So Seth is not a baby anymore... well, he is, but not so much! He has discovered a new independence (well, except for sleep HELP!) and spends a lot of his time interacting very intelligently, manipulating toys for function and climbing around. He has full reign of our home (within reason) and he wants to be where the action is. He has also had a few teething biscuits this week and is using his little teeth the gnaw away at them- very cute... Seth is so precious. I know you will love him when you see him again or meet him for the first time. Do you like the scrunch face he's now making? What a miracle baby...


With love...

Great Clinic...

Thanks for checking back! Seth's clinic went very well- we arrived at 7:30am without a hiccup of traffic and were moved from one module to the next with little fuss. When we arrive, we check in at one counter and retrieve paperwork for the day, then on to get labs drawn and injections if needed (which he did unfortunately, 2 at that!), then onto the module where the doctors, social worker and coordinator come in for a visit and check up. There's always somewhat of a snag in there somewhere as you can imagine, but getting to clinic was alright! Now if only that paperwork could get figured out!

Seth sits just below the 50th percentile for his height and weight. I was satisfied for sure, but a little underwhelmed in truth. Because Seth is eating more frequently and has a sincere interest in food, I was sure he would be up there further. Of course, there is always that fear that the steroid he takes, Prednisone, will interfere with his growth. I'm sure this contributes to the overall reaction and we have been told by the "team" that this is a possibility. Thank goodness there is an end in sight for the Prednisone at about 9 month post transplant. This is one of the best ways to deal with anti-rejection. In fact if the body ever does actively reject a donor liver, it is treated with high doses of steroids, isn't that interesting? Anyway, Seth is now 3 months and 17 days post transplant!

We are currently awaiting a prescription to be filled for Seth's Valcyte, the oral antibiotic which will replace his current IV antibiotic with a very fancy name. This coming Monday, we will find out the course of action for the following days of next week. Seth's primary liver doctor, Dr. D, would like to remove Seth's Broviac line late next week!!! There is a lot of planning of surgeon's time and outpatient surgical rooms, etc. so we will see how it goes, but it is likely to happen within a week or two as long as his tests come back with flying colors (these tests check for lower respiratory infections that are potentially harmful to transplant patients). This is a blessing, true, but I anticipate the fasting and general anesthesia, the blood draws, etc. and I tell you, I tremble. I wish I were more brave and perky. Nonetheless, Seth is progressing! I follow another blog of a local boy who is a cancer survivor and also underwent a liver transplant just before Seth and he too just had his Broviac removed recently. Much needed encouragement when I read that. He's 2 years old and you can find his story at www.welovecarter.blogspot.com. I don't know the family, but have found moments of solace in their story.

So, all in all, Seth is great! His sleeping habits are terrible (we aren't sure why) but other than that, he is developing his milestones wonderfully. He has a new "scrunch face" that is absolutely adorable- I will try to capture it so I can post photos of it and he is babbling up a storm, no, not specific word association yet, but its a 'comin! Yesterday he also stuck out his arm and waved it up and down all day... I bet HI will be his first word.


With love friends,

Sam

Happy New Year!

Happy New Year friends! We hope this year is blessed with the depth and understanding that only God can give! May you rejoice in what has been given, trust in what has been taken and be thankful for all that you have...

Reflecting back on 2009 has not been easy for me as a whole. It is the tumultuous things that seem to shape us, but do not define us. Seth is a wonderful example of the verse in James, Chapter 1...

My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.

The shaping and chiseling away of the former has deepened me to no end. I know in my heart that I will never be the same- as would be expected. I know that our family, in some way, will never be the same. The ideas, the ideals, the way you would go about life, taking things for granted, it is in another perspective now. Nothing can be taken for granted, because, truly, one never knows what's next. The stark reality of that is sobering. But alas! The beautiful thing is that we are all so much more than this earthliness. By proper perspective, we are not bound by the frailties of humanity, we are all so much more, as is Seth and his life. It's just that looking at frailty feels awful and leaves one feeling unsafe. I am truly thankful this year, 2010, for being safe in the arms of God. That is enough.

Through this journey I have truly grappled with concepts never much considered. Why me, why us? Why sickness, is it punishment, is it simply the demise of the human condition? Why does God allow discord in the body or otherwise? What is the purpose of this? How can I grow from it? Why this to make me grow... and it goes on. I won't go into detail on my answers at this time, although I have come to many, I obviously haven't the answer to all of them. But what I have settled in my heart is that I am loved. It's tempting to feel abandoned when we ache- to feel all alone and neglected. But it is an emotional trap. If Jesus is the same yesterday, today and forever (Hebrews 13:8) then circumstances cannot be any measure to navigate by. It can't matter the breadth or width or depth of what they seem. God is steadfast and solid. I actually heard a man on a public access channel round tabling about happiness just yesterday. He was suggesting that people find it such an injustice to experience pain or suffering and I thought he was quite right. It does feel like injustice! But he also went on to suggest that it's simply the frailty of the human condition to experience suffering and it would behoove people to get familiar with that concept. Wow. It spoke volumes to me. In all it's simplicity, it spoke volumes.

Seth is doing wonderfully...

We are back to the clinic this coming Thursday for our first visit in three and a half weeks- I think it is. Wow, it made the holidays that much brighter! Seth has been trucking along just great. He has mastered scooting around the whole house- which makes me nervous by the way! That Broviac line is just hanging there under his onesie dragging along with him. I cautiously examine it daily looking for signs of wear and stability. As we spoke about before, this Thursday we should be discussing when the line will be coming out, so this is a big milestone! I will keep you updated on that. Seth has also decided that he wants to walk ASAP. I caught him yesterday scaling the couch. He stands for much too long against the side of anything- a crib rail, couch cushion, laundry basket, the wall, you name it. Having two other children, we never experienced this so soon! A friend commented that he's making up for lost time. All I can think about is how easily he could fall, he's much too young to think ahead. But, I do have to say, he is pretty amazing and capable and oh so cute. He really is an amazingly happy, good natured baby.

I am hoping for a decrease in his medications soon. At least the IV medication will be transferring to an oral soon! Not looking forward to the fasting and hardship for Seth with getting his IV out, but I am looking forward to his relief of an IV hook up daily and all that entails. He will be much more free in many ways.

Seth eats Organic Gerber twice daily! I'd say his fav's right now are Applesauce and Winter Squash. He also can't resist a mash of banana when his big brother is eating one! He has developed a sincere interest in food and growing great. I even saw a little chunkiness on his thigh this week! He tries to eat his toes too and that's super cute.

We've been to the park these last couple of sunny days and Seth loves it! I watched him lay on his back today looking at an airplane go by. He was mesmerized, It was great. His favorite part was a little push in the swing, he crinkled his nose with laughter and all!

Well, I'll sign off for now. I'll write again next Sunday, or before if we have clinic news. Thanks for following with us and bearing with us.

With much love in the New Year,


Sam

p.s. I left you with a few photos of Seth that bear his scar and his line. Just click on the photo to enlarge it, oh, and look at his 2 teeth!

Merry Christmas!!!

Merry Christmas! Happy 3 months Seth!

Well, the eve of Christmas is just hours away, are you ready to celebrate the big day? We have taken it very easy this year and hold our blessings dear to our hearts. We are so aware that our family is the true gift and the giver of that gift is the Lord. Our hearts are forever changed after Seth's diagnosis, transplant and continued recovery. The small moments count. The hugs and kisses and cuddling, the playing and listening- even just listening to the playing, it counts! It's all taken on another tone. The rivers of our hearts run deeper than ever before, the pain felt deeper, the joy known deeper- we have been pushed to our very limits this year and wonder how we have made it and praise God that we have made it, that Seth has made it. I don't know if one could ever feel more vulnerable than when their child is battling for life. It really puts in perspective the truth of the matter. We can only do the best we can to love and care for them, the rest is in God's hands and we are safest and assured when we rest in Him for their lives. Peace is known there and nowhere else.

I often wonder what Seth's life will be like, how long will he live or not live. The transplant is only the first step after all. Seth's body needs to learn to accept that liver as his own and only time can accomplish this- and then, there is still no guarantee. Which reminds me, love him now and love him earnestly and leave the details. Do the best I can to make his life rich and fulfilled and let the rest be.

Seth is growing leaps and bounds. He is up on all fours rocking back and forth and scooting around quickly! He is very hard to contain, as you can imagine! He has zest for life and still smiles often, although not quite as generous! He is growing up after all and trying to read facial expressions and remember who people are. The nurse that came this week for lab draws got no love, none! He was inquisitive and serious, as we see more often these days, like he's trying to understand.

Today is Seth's 3 month anniversary post transplant. This is a true milestone and can mark a halfway point where we can say Yahoo! 3 months down, 3 months to go before giving a sigh of relief that the transplant was a true success. Initial rejection usually takes place in the first 3 months if it's going to happen, although the 6 month marker is a real trophy. By 9 months, we can be pretty sure the liver is settling in quite nicely and Seth is responding well to it. His meds have yet to decrease, although there are progress points just around the bend...

We expect and plan to have Seth's Broviac line taken out this January! This will be a major milestone as it feeds directly into his heart flow (sits just above anyway). Seth has never had a real bath that he knows of, not since 4 months old. All bathing has been creatively done with a tub next to him and washcloths. I can't wait to immerse him in water and see his reaction! I am thinking he's going to really enjoy it- he has such a fascination for the water when his big brothers are bathing! Having the Broviac removed will require Seth to have intravenous blood draws, so you trade one catch for another, but ultimately, it's a good thing. The line is a bear to maintain and requires a lot of TLC as you can imagine. Not to mention, he is getting older and a bit fascinated with it- it is not a sturdy catheter after all and is only held in by a small balloon and a stitch. Removal is good.

Around the 6 month mark, post-op, Seth will decrease a few meds. I will keep you up to date on that as it happens!

In the meantime, Seth continues to sit up very well! Crawling is around the corner and his new favorite food is winter squash... he is an amazing baby and we look forward to spending our first Christmas all together, as a whole family.


With love and warm wishes for a wonderful New Year.

Samantha & family