Thursday, February 28, 2013


We are learning Taizi.

Not sure anyone else has ever taken the time to do this and it's some time...and some work.

So sleep update. He started doing strange things.  We would leave his room once he was fully asleep and about 10 minutes later we would hear hysterical laughing.  We would run upstairs to find a SLEEPING TAIZI laughing.  Then we'd leave once he'd stop and 10 minutes later WAILING. Not noise...SCREAMING.  So we'd run upstairs and same thing. He's sleeping but fully wailing.

Actually 2 nights ago he woke so many times in the night and did this over and over and over.  It was a very long night and in the morning the other kids said they heard it all :(

So.  I had an idea.

Since at most levels, he's like an infant. We tried something.  I swaddled him.   With a pacifier. And laid him on his belly on the couch beside me at 1pm.  His face was turned inward to the back of the couch.  In about 35 seconds he was asleep. Never ever ever ever ever has it happened like that. So I went to the kitchen and about 5 minutes later....uncontrollable laughing.  Eeerie laughing.  I walk over, he has not moved, he is sound asleep.  If you don't tap him...he fully wakes himself up. It's very strange.  So just to let him know I was there and that he needed to sleep I just tapped him on the bum (diaper, swaddled blanket on top of him) and he immediately stopped and went to sleep.  10 minutes later ... SCREAMING.  Same thing.  Then a third time...this time his eyes were WIdE OPEn and he was screaming/laughing and I thought it was too late he was looking wide awake. THis is the spot where if we are not there ... he fully wakes him self up.  So again I did the same thing and this time he went OUT. Snoring. Heavily.

This was so enlightening b/c I was fully witnessing it the entire time.

And once he's in that deep REM sleep he is OUT!

He slept for 1h40 minutes. Not as long as he needs but it was a good start.

Then at 9pm we did the same thing. On the couch beside us.  Same thing. He went to sleep very very quickly and three times woke either screaming or laughing. Same story. We got him to sleep and he started finally snoring. Then we carried him to bed and never heard a peep til morning.


I'll be completely honest...we aren't ruling out spiritual.  We pray over him when he does this.  It's like he's being tormented in his sleep and really is kind of creepy to see/hear.

Tomorrow is his eye appt in Seattle as well as his bone scan.  The kids are so excited you'd never know we have been to Seattle a million times already this month ;)

Zihao is learning a lot and talking more and more.

Yesterday while teaching the kids school, we heard Zihao say firmly "Izrael...NO NO! You say SORRY TO AHO!" and then we heard a meek Izrael reply "Sorry Aho" and away they went playing happily. We all laughed but it was very cute seeing though he hasn't yet SAID sorry, he knows he should and knows the meaning :)

Tuesday, February 26, 2013


The slide show is ready! It's not perfect but it's ready :)

It's very long, turn up the volume on your computer to watch. We chose songs that were really important to our adoption journey.  Feel free to leave a comment on the Vimeo site or here on the blog.

*you can make it full screen by clicking the button on the bottom right of the video*

Sunday, February 24, 2013

Little love(s).

This weekend has been quite the weekend. Due to many trips to Seattle for doc appts and Dean being slammed with work (always a good thing when you are a contractor)...we did most of the weekend solo.

Today after lunch he had to go to work. Very rare that he works on Sunday but in this case, he had little choice.

After lunch I got out a cookbook that Tirzah's g.grammy gave her for her birthday. I told them to pick a recipe.  It was so cute. They were all going back and forth so that they agreed...brownies it was.  I lined up all the ingredients and gave them each a job.  Of course we altered it...removed nuts and put in marshmallows and mini m&m's.  :)

During this time, Zihao, Taizi and Izrael were napping.

Yes. To back up. I've been working hard sleep-training Taizi. I'll be very honest, I've tackled easier tasks in my life :)  He, however, is so very sleep deprived.  According to the orphanage director, he was napping daily there.  He's only napped a handful of times in 4 months with us and then takes forever to fall to sleep at night.  Having 5 biological kids, my saying is "sleep begets sleep".  Contrary to what many will say, we have proven with 5 very different temperament children...that they more sleep they get, the more they need.  The better they nap...the better they sleep at night.  We sleep train our babies very early on for night sleep...but don't do scheduled naps til about 3-4months.  Each of our children have been on the same exact sleep schedule at the same exact age.  Hopefully that proves it's not just luck ;)  Izrael sleeps from 1:30-5 every day and then 9pm til 8am every night.  Every one of our children at her age (2 in a few weeks) as done the same.

Soooo back to Taizi.  No naps and he struggles falling to sleep. Once asleep...he's a very sound sleeper and sleeps about 12 hours each night.

So 4 days ago I set out to train him.  To say this was time consuming would be a gross understatement...and the thought came to me many many times over the next four days ... how easy it would be to say "umm it's not working" or simply that this is not for the faint of heart.  The 'good news' is that he's deaf...therefore I can commit to it and still be talking to the other children when they needed me.  Day took 2 hours and 20 minutes for him to fall to sleep.  Eeeeeeee.  Day two it was 1hour 45min if I have it correct.  Day three 45 min...Day four ...15min.  Today day 5...40 min.  First thing we do is establish a pattern so that he knows when x,y,z's time to sleep.  For an infant we would bathe, feed, change, swaddle, kiss, lights out, bed.  For him...obviously a tad more difficult :)  So what we did is feed, change, put to bed on his belly with soother in his mouth and then tuck his arms by his sides snuggly with his blanket. Blanket on his head, not his face.  Then I sit by his bed where he can't see me. If he moved out of position, I tuck him back in.  What's amazing is how quickly they learn that you are there and you are consistent.  So much so, that today I did all of that and then left and made a snack for the kids and came back about 12 minutes later and he hadn't moved and was still wide awake.    The GREAT news is that he's napped now for 5 days in a row! AND still sleeps a full 11-12 at night.  :)

I must must get a video of Izrael 'talking'.  There are no words. She is so funny and adorable.  She wants to talk so bad (and look out when she has words!) but her vocab is pretty limited being only 23months so she fills it in with random syllables.  And expressions. And hand movements.  It's the best.  Every now and then the word Ah-how (zihao) or Piddy (piggy) will slip in there. :)

Tonight Dean got home late. Most of the kids were in bed...just not Izrael and Azahria (who had a very long nap today).  I had put Taizi in the playroom while I brushed teeth and put kids to bed.  He did something really cute.  When I came back I sat on the floor a few feet away from him.  He crawled to me and then put his hand in my hand (like interlocking his fingers).  Then he felt for my other hand that was down on the floor and did the same.  Once he had both hands he stood up and then crawled up me to where he was standing on top of my legs and right in front of my face. Then he started to laugh.  It was a small peek into a connected moment with him.  Once there and looking in my eyes for 10 seconds or so at a time (amazing) he came even closer and laid his head on my shoulder.  :) It was pretty special.

When Dean came home, he sat in the chair and held his arms out to him.  He loves his daddy and he always has. He has a special bond with him.  Well I decided to sit on the floor beside Dean and open my arms. Taizi had several feet to crawl to get to us and the entire time he was looking at Dean then at me. Back and forth. It was very cute to watch his little mind work. We were both positive he was going to Daddy...I kidding. No way. He bee-lined for Mama and again came right up on my legs and snuggled into my shoulder!  I don't think either of us said anything...I was so shocked.


As I walked out of the boys' room tonight, Zunduka (8y~adopted from Africa 3 years ago) said "Hey Mommy...I just wanted to say...I really love you..."  it was said in the most sincere way and made me stop in my tracks.

When I went to tuck Tirzah in, she said "Mama...I can't believe I have you for a Mama. I are so wonderful AND you love Jesus...! So awesome! And you know...I can't wait til I look in Jesus' eyes for the first time. Can you imagine Mama? Do you ever think about that...?"  :)

Then I hear Azlan say "Mommy....? I love you to the moon and back!"

Hearing all the laughing of Me and Taizi and Izrael, Chazano comes running out of his room "am I missing something fun out here?" :) I assure him he's not and off he goes smiling.

And while nothing in our life is for the faint of heart right now...what a beautiful life we are living.  As blessed as Tirzah feels that I'm her Mama...I may not have chosen this crazy life...but so humbled God chose us to live it.

Filled with little loves.

So easy to miss in the busy-ness of it all.

Don't blink!

Friday, February 22, 2013

Random act of kindness~

Today I was tagged in photos on FB ... so I went to take a look.  A lady who owns an amazing business called Funkey Monkey had tagged me in a 3 piece set of a minky blanket that was personalized with a cross and "Sweet baby girl Walker...edd 7/3/2013" on it.  She had a matching hat and booties as well.

A few minutes later it arrived in the mail. I was seriously blown away.  I only know her from having her make a few pairs of pants for Taizi and Izrael's adorable coming home outfit!  She does amazing work and what I love about minky is that it never fades, never wears out! Those outfits were washed and dried so many times and you'd never know they were worn!!! I will definitely be buying this little princess' outfit from her this time!

Please. Go show her some love and check out stuff out! My fave are her minky booty pants (that you can personalize) with matching shirts / onsies and hair bows or headbands. The quality is outstanding and for a baby gift...the price is amazing as well!

Please tell her I sent you!   I'm still in shock that someone I don't even know would do this for our family!  Such a beautiful gift!

Thursday, February 21, 2013

Taizi~heart and health.

We went back to Seattle (oh so familiar these days) on the 18th.  We stayed with friends for the night. wouldn't want 9 kids on your living room floor...? They were awesome! Our hosts...I mean ;)  And the kids. They ARE awesome. ;)

Actually it was funny b/c they had beds set out ALL over the house for the kids and we put 7 of them all in the one section. Hey...that's their sleepover ;)

We got up and had breakfast and took Taizi, Zihao and Izrael with us to Children's.  It was about a 40-1 hour ride.  We got there right on time and hardly any wait. 

Dean went with Taizi to get weighed and when he came back he said "9.7kg" I asked if he was without clothes and the nurse said "nah, we don't care". No no no. This weight will be recorded. Back they went to a diaper-only-weight and lo and behold...9.5 kg.   2 weeks of extreme fortified foods...not one ounce heavier. 

Dean dressed up in OR garb to go in with Taizi until he was sedated. He was so much better this time in the hospital, assuming it's because Daddy was with him!

After that, Dean took Izrael and Zihao back to our friends while I hung out.  It was about a 2 hour procedure in the cath lab.  Yes they repaired a hole in his heart through a vein in his leg..!  Crazy.  They paged me to let me know it was done. The Cardiologist met with me and said though 99% of these patients go home 4 hours after the procedure, Taizi's hole (or extra valve) was very large and he would need to stay all night to make sure things stayed put. 

A while later I was led to his room, and I sat there solo.  The nurse came in and said he had a mandatory 15 more minutes in recovery but the PACU nurses were struggling with him as he was quite upset.  So she led me there. I walked in, he was wailing...I could hear him across the room. I got in front of his face and he instantly laid back down and stopped crying. It was a pretty amazing moment and the nurses were all melted.  It was extra amazing seeing I'm not Daddy and he calmed just by seeing me ;)

He was led to his room where he laid in his crib hooked up to IV.  He honestly seemed more than comfortable in that crib and I began to see a peek into his previous life. His hand movements only became more extreme as he wrapped his fingers in all sorts of ways around the crib bars.  And ... his contentment there...was an eery reminder of the life he has lived. He never once sat. Never once rolled. He just laid there doing all sorts of things with his hands for hours. 

He slept better than I did. The IV machine went off regularly. And ... well...21 weeks pregnant on that couch...I've had more amazing nights' sleep ;)

In the morning they came in and did an echo and we got the green light to go home. His heart sounds amazing, you can't even hear the murmur anymore. They said it can 2 years before the flow stops completely...well the echo showed no flow at all. Pretty amazing.

We came home last night.  We were in the parking lot of the outlet mall on our way home when a guy came up to us and I knew he was familiar but not sure where. He called Dean by name and I took a guess with his last name ... and got it right. How random! They are living in Boston and recognized Dean and it was only proven by the van full of kids that proceeded to get out ;)

We made it home in great time, so great to be traveling at dinner time instead of midnight! 

This morning I received a call from the Cardiac nurse who checked us in to surgery yesterday.  She was so great. Checked in on us and then got soft and said "I wanted to take a minute and tell you how blown away I was with you and your husband.  I wanted to say I think you both are just amazing for doing what you are doing...thank you".

We talked about his bruise from the procedure. It's rather large, especially for his size. So we'll keep an eye on it.

Later in the day I called our nutritionist at Children's.  She's great.  She loves Taizi...and us.  I told he's consuming 1650 calories a day. That is 174 calories per kg of body weight. And has gained...not ... one...single...ounce.  She was speechless.  She really truly was speechless. They do not feel a PDA could account for this. Slow weight gain...? Sure. NO WEIGHT GAIN despite dramatic efforts...? No way.  She actually told me we could slow back...b/c we are almost force-feeding at the end of the day to get this amount into him and he is FULL!  She asked me to call the cranio facial doc. 

I did. She answered the phone, so excited to hear from me. Seriously...we are loving our team of doctors right now.  We talked about him, his PDA procedure, his weight etc.  She was not happy.  I asked what she thinks about my gut feeling that he is much much older than 3.5.  She asked if I had any way to concrete that ... I said I don't...however...the other night I looked in his file and found his "finding photo"...the photo of him that was printed in the paper to find his family when he was located.  Deep breath. It is not...him.  It is simply not him. It is a cleft affected child. With a right ear that is lower and deformed.  The left ear is neither lower nor deformed.'s impossible to be him.  Woah.  The doctor was really taken back by this.  I talked about how his skin is really wrinkly.  His hands and feet and even his face. I've said from moment one that I don't think he's 3.5y. Yes he's tiny but he has an older look and his skin...I just don't think he's that young. I could be wrong. But...combined with the fact that the doctor is concerned his body is simply done growing...she ordered a bone scan to date his bones and see what age it comes up with. 

And a slew of blood work and testing.

She talked about his kidney scan and how his kidneys were ultra tiny (no kidding, HE is ultra tiny) and there was a concern. While initially thought to be minor ... he has high blood pressure...and the weight issue...they are taking the kidney concern more seriously.  So some of the urine testing will be looking for further markers of kidney issues.

This is where we are.  So all is good with Taizi. We are so thankful for his heart procedure and to have it behind us. 

Azlan update:  I have no idea what to say or if I should say :( Day 6 after stopping antibiotics for the first time since April 2012...the site is inflammed and swollen.  We went to the pediatrician today...who was all "we will find a surgeon to remove it if yours refuses" in the beginning and he was a different story today. I actually started crying in his office and he turned and walked out and closed the door.  Noooooo problem. 
I wrote our infectious disease control doc friend and he replied feeling our frustration and said really right now we have to wait and see if it progresses as he suspects it will so we can culture it and then go from there.

That's all I'll say.  And that I came home and cried. 

And that my husband came home with a DQ icecream for me. 

And...that at the end of the day...every thing I'm fighting for is worth the fight.  So I'll save my fight for the battles that count. And when comes to our family, and the health of our children...those are the battles worth having the energy to draw our swords for. 


Saturday, February 16, 2013

Kids' perspective.

For a few years now our children have "prayed for Daisy".  On the left of the blog you'll see "pray for Daisy" blog. A young girl at 6y was diagnosed with cancer. Her Dad is a well known pastor of the Village Church in CA.  We have followed their heart wrenching journey of never giving up, never stop fighting, never ever ...ever get your eyes off Jesus...for a few years.  The kids have listened to me read blog posts about her...and faithfully for years...they have prayed for her daily at lunch time.  Just this morning Azlan prayed 'God, I pray for Daisy. Please heal her from cancer and make her ok".  Little did he know...God had answered that prayer once and for all.  Daisy was in the arms of her Savior already by the time Azlan had prayed that.

I found out this afternoon and I called the kids to my room where I was sitting on the couch with Izrael and Taizi.  They all stood in front of me and I had a lump in my throat.  Oh me...of little faith.  I said "I have some sad news for you guys today...I know you'll be really sad...Daisy died in the middle of the night last night".  Oh faces went serious, Azlan's jaw dropped in dramatic fashion and Tirzah spoke up and said "how awfully sad for her family...I cannot imagine that they lost their little girl...but oh Mommy...Daisy is with Jesus.  Can you believe it? She's seeing the castle that I can't wait to see. She's with Jesus and I bet she has seen Jesus' horse by now!" (Tirzah is in love w/ horses).  Immediately the sad faces all went to what they imagine she's seeing in Heaven.  It was such a beautiful thing to see.

Time and time again through their journey with their little girl with cancer...her parents have said they have felt the very presence of Jesus in their daily lives as never before through this horrible sad time.  Daisy absolutely loved and loves...Jesus.  She wanted everyone to know her Savior. The one who had taken away every sin of hers so she could be where she is right now...with Him.

As a heart sunk when I read the news.  Daisy is with Jesus tonight and life ... real Life...the life she was created for...has just begun.

Thursday, February 14, 2013

An emotional day.

I actually...for the first time...sat and thought about the title of this post. And it was my first thought ... and my last one.  I have no other way to say it.  It was an emotional day.

The weight that we feel regarding Azlan's medical condition is pretty heavy.  This is our son.  Our son that has battled an infection in his head since April 2012.  Doctors that are disagreeing. The specialists say it's definitely a classic infection with a bandaid on it...(bandaid =  antibiotics).  We have just removed the bandaid.  Specialists want the implant removed. So do we.  Yet the surgeon says NO WAY.  Seems to be some good old fashioned pride getting in the way. He must have told me 4 times yesterday that "in 12 years I've never removed and implant".  I was quick to assure him I don't blame or fault him one bit...but I absolutely will if he fails to remove it and an infection goes crazy in my child's head.

He was so adamant.  NO. WAY.  After prescribing antibiotics and even seeing him admitted in the hospital and sending him home with a PICC line of antibiotics last year...he now changes his mind that it's not infection at all.

My stomach is in knots.  It's amazing how you can have peace through some crazy times in your life...but right now...we have no other answers.  Other than take photos of his head twice a day to log any changes whatsoever.  And Azlan...with a very high pain in pain. The site looks great at the moment. The skin is all peeling every which way which is what it does after it's been inflamed and it was last week.  But he's hurting. And we have no peace about what we've just done.

On top of that...if it does go crazy with infection, his surgeon won't remove it until things are too serious for our comfort.  A CAT scan of his skull showing infection...??? This is skin deep. Are we really willing to let it go that far...?

Ok so this has been gnawing at my heart all day and ... is not going away.

But today was a good day.  Around work and school and life...tonight I made the kids a v day cake...and Daddy bought them all the coolest piggy banks ever and cookies from the bakery. Yes...piggy banks. They've all been needing them...and we saw some really fun ones that we were able to pick to their personalities and they were SOO excited.

Taizi went to bed stuffed til he couldn't look at his food anymore.  This is clearly the max we can get into him. His liquid now being such a thick heavy liquid, he can only handle so much.

The amazing news is while we started OPERATION NO MORE BOTTLE just Monday...we are there. 100% there. Bottle is gone.  He is totally on a sippy cup and spoon fed. And the same amount of intake. So amazing it gives me chills.  We have worked hard but have made so much progress.

The sippy is one of those ones I actually hated for our bio kids its the one with the soft spout that you have to bite and suck at the same time. Well the other kids could never figure it out. Taizi bites and it comes pouring into his mouth so it's so perfect.

We even found out that Hershey's chocolate syrup has 50 calories per tablespoon so that goes into each bottle of pediasure 1.5 and adds 150 calories a day. I know. Disgusting that this is what we are pumping into him....but try finding high calorie foods that a very very very particular child will swallow.  The nutritionist loves it. She was telling me mayo and butter...and he won't take it.  But this he sure will.

It's going to be interesting to chart the growth...and see what happens.

Tomorrow morning we head to Seattle. Again.  For dental appts. While it honestly feels silly to go all the way to Seattle for's a prerequisite for his heart procedure on the 19th. we go.

Today the phone range 4 times from Seattle Children's with Zihao's referrals starting to come in.  Oh yes.  :)

The house is quiet. And my heart is not.  Oh please God...please give us wisdom with Azlan.

Wednesday, February 13, 2013

Azlan Baha update.

So the background of his story is he had an implant into his skull in April 2012.  He got a Strep infection at the site of the implant and was on 2 weeks of PICC line antibiotics after being admitted in Seattle for a few days and Spokane for a few days. After that he was put on oral antibiotics for 1 year as a preventative.  He did ok...we were able to use the BAHA processor for much of that time.  At some point, around the time we were in China...his head started looking infected again.  Red, swollen, sore etc.

Since then, it's been a bit of a nightmare.

Constant swelling (sometimes as high as the screw itself) and redness, drainage around the screw, soreness etc.  We have consulted with a well known infectious disease doctor who believes the original infection was never killed and is basically laying dormant. The oral antibiotics are acting as a bandaid and keeping it at bay.  However...not working that effectively at this point.

Our new pediatrician, a specialist himself, wants the screw out.  He too says this is classic for a infection at the site of an implant and really  you won't get control of it until it's out.

I was prepared for a confrontation today with the surgeon.  Simply b/c at every sign of infection we would call him and he was definitely fighting us on not wanting to remove it.

Well today he walked in with a resident doctor.  Immediately he started into his theory that this is "aha...not infection at all!" it is instead an allergic reaction.  Well we had discussed this on our own with infectious disease and b/c the screw is titanium...that's very very rare. Also..the symptoms were not consistent with allergic reaction.  Well the surgeon does NOT agree.  He said he will not remove it until infectious disease shows him a CAT scan of the infection. great. Let's get the infection into the SKULL next to the BRAIN and THEN let's do something.

Well he started washing his hands and went and got something. He told Azlan to come and I said "what are we doing?" he said "just a little steroid injection to help the reaction" uhhh. no. I stood up and said "not a chance" the site is infected and we aren't injecting ANYTHING into it without approval from infectious disease.

Bottom line is he thinks it's a total joke that it's an infection.  No way.  He said we are to end the antibiotics now b/c they are doing nothing b/c it's simply not an infection.  Yes. We are serious. The only way to avoid that injection was to say ... I bet you that the infection will go crazy off the meds. He confidently disagreed.

He said "Azlan is 1 in 100,000" so I asked if he's seen this at all in all his years and he said "NO". Ok. Good starting point. So...we are going to go with with the infectious doctors say.  He would laugh.  Yah. That's about the atmosphere of the room.  I'm glad I held my ground~and it wasn't that easy seeing he was laughing, telling me we were way off...there is no no no this is classic allergic reaction...and on it went.

On top of everything...when I said "my gut is not agreeing with you" he laughed and said "really?" and I said ..."Ohhhh really. After 6 years of fighting for his care...what's proven to be the most trust worthy my gut feeling. This doesn't add up. It cultured a STREP infection in the beginning so we KNOW it was an infection..."

We have a lot going on right now. We are very concerned that it will get out of control and we'll be on the road in Seattle this weekend. However...there are worse places to be.

That is how our appt went in Spokane.

However...making every trek fun for the family we had a fun lunch and Krispy Kremes for the ride home.


Monday, February 11, 2013

A new week. New changes.

Taizi. He hates change.

Don't we all?

He's obsessed with that bottle that he uses as a regular bottle...but don't change it!

His whole body SHAKES and jumps with excitement when he sees that bottle.

Yet...we are moving towards getting him off it.


The nutritionist is on board. As long as we get the same amount of liquid into him each day...she too wants to see that bottle gone.  He's 3.5 years old. He's gone from 100% formula/rice fed through a bottle to food in his food via syringe in his food via SPOON and formula in his bottle to now...Operation No More Bottle.

The most amazing part of this is...he doesn't taste what he gets from his bottle. We have proven this time and time again. The top of the Haberman is so long it passes his tastebuds. We've been able to work this to his best health advantage and put things he'd NEVER swallow could he that bottle.

Now we are not only trying to remove the bottle..but he will have to taste the liquid.

Big changes.

We removed the valve of a regular hard-top sippy cup today and 100% of his liquid feedings were via that sippy! NO BOTTLE! He doesn't suck the cup but we are more or less pouring it onto his tongue and he opens his mouth and swallows.  The first time he really freaked out but once he tasted the warm fortified formula (Boost 1.5 or Pediasure) he loved it.

The only bad part of the day...was bed time.

I think I've said before but he has this very narrow window for bed time.

You know you have passed it ... when he starts fits of hysterical laughter and we all go "uh oh". The laughter turns to screams in bed.  We've missed the window.

The problem is... this window is around 6:00 pm.  He doesn't fall to sleep right away but he will quietly fall to sleep on his own.

Tonight dinner was late and he didn't go down til around 7:30 or 8.  He screamed like no tomorrow in his bed...we assume from wanting the bottle. His belly was full...he had the same amount of food as he did yesterday...just not the way he wanted it.

And mind goes to the spiritual realm.

How we all can relate.

As our pastor many of us are so content to go to church...hear solid message after message and just be...spoon fed. Open your yop...and swallow. That's all you have to do.  No chewing. It's all minced up for you.  No handling a fork...put your hands down and open wide.  That's it. Nice and easy.

But so many of us...never move from that stage.  To the picking up your own fork stage.  Opening your own Bible stage.  Reading it yourself...stage.  Studying it deeper stage.  Being accountable and going deep...stage.

We have to be prodded. God is pushing some of us.  Out where we don't want to go.  We don't like the change. We looooovvvvveeee that bottle.  And...we are getting food...I mean...aren't we? We are hearing the Word...being taught the Word...and we almost lull ourselves to sleep with the fact that we don't miss a gathering.

We need to grow. And in order to experience true growth we need to pick up a fork.  Chew those teeth together.  And USE what God has given us.

Isn't it sad that Taizi is 3.5 years old and he's never had a spoon in his mouth until now? He's never tasted food for himself? Just put it far back...where the least amount of work is required and he'll swallow it. And...survive.

Growth? hasn't been happening.

The analogy may stop there because there are more reasons that than to the lack of growth.

But Taizi captivates many of us b/c we see ourselves in him.

He fights...what is the very best for him.  If only he could see ahead. He wouldn't want us to keep him on that bottle til he was 8 or 9....just one more day.  One more bottle.

Oh the promises we make...for tomorrow.  Well no kidding I don't intend to be in the same spot next year! But this week...? Today...? Tonight...? I'm getting fed at church.  I'm getting fed at Bible study.  I'm at church a few times a week...I mean...really...

Today Dean came home with Gerber baby chews.  I looked at him and said "really...?" and smiled and he lit up. He said "oh I can't wait to see him use his teeth and chew! I think he'll love it!" and I again said "...really....?" and he laughed.  "Well not right away he won't...but he will. Eventually...he will".

Is that what God says about us...? Give us a bigger challenge. Force us even more out of that warm cozy comfort zone ... that spiritual nest we have snuggled down into... and he made us go from bottle to spoon and we finally stopped kicking and screaming...and even...don't tell anyone...but the spoon now. But don't make me chew. Don't change me again....

Oh He wants so much more.  Loves you way too much.  I've known that for years. Could I fully see it before Taizi...? Maybe not.   Now as a parent ... we are trying so hard to keep pushing for more.  Not for us.  For him.

I've been spending time with Azlan teaching him to say every syllable of his words slowly..and clearly. Today he said "this is too hard. I don't want to do it. Why do I have to try so hard...?" and I got a lump in my throat.  You are right.  You have to try harder than the rest of us.  But you can.  You can work harder...and be your best.  He can't hear himself as we hear him.  I said back to him exactly how he pronounced his words and he frowned..."Is that what I sounded like...?" "yes, is" and he said "oh I didn't know that".  He said "people always say "where's your brother to tell me what you are saying" and I don't get it! Why they can't understand me...".   :(  I told him, together, we won't give up. We might have to work harder, slow down more...take more time to talk...but it's worth it.  We won't give up.  And then I said "just wait til you can tell Zihao someday...that you did it..and he can too!" and he smiled. "yah. that's right", he said.

It's hard pushing him for more.  Helping him be better.  It's so much easier to just let him stay the way he is.  But we love him too much to even consider it...

You know the rest.

Saturday, February 9, 2013


Taizi has had a tough week. He seems to really struggle after hospital days.  He doesn't eat well, doesn't connect much at all...and just seems off.  That's hard because we have so many hospital days.  This month we have been to Seattle 2x last week and we have 4 more booked in the next 2-3 weeks. I've had several voicemails about needing to book more.

We went to close friends on Sunday afternoon for the Super Bowl.  Taizi seemed very focused there and to our surprise...manifested some attachment issues.  We let him be held by a friend's daughter in law.  It was all good until later he scooted over to her to be held again. This was a shock for us...and sad.  Showing us again how important it is that we be so careful.  Up until that moment I don't believe anyone but my good friend had ever held him since gotcha day (and he reacted negatively to her holding him that time).

Last week, I had my big level 2 ultrasound.  I went alone and, not finding out the gender, it was almost boring ;) I didn't want to see a hint of anything and therefore refused to look at the screen unless she was basically looking at the face or brain. Because we have a biological child with a severe cleft lip and palate...a lot of time is spent looking at the face :)  The ultrasound was I couldn't see much at all. We did see a complete lip and palate.  That's amazing. And yet...there's always this twinge deep inside of me knowing we will not see that precious face again.

I brought 2 envelopes and 2 small pieces of paper inside each one.  She wrote down the gender and tucked it safely into each envelope and sealed them.  I, without a hint of temptation, took the envelopes and a few ultrasound photos and went on my way.

I came home and put them on my desk.  We talked briefly about how the baby looked healthy and was measuring right on target.

Our week moved on.  School. Life. Family.

Thursday afternoon, Dean texted me mid - day asking if I could find a babysitter for a date. For Thursday? I was was random. I did find that our sitter was available so we booked her. We left and I...still having no clue what the impromptu date was all about...was rather shocked.  When we sat down at the restaurant Dean said "one of the reasons I called for a sudden I have a question for you.  Finding out the gender of the baby...rate it from important it is to you".

I had made a promise to Dean that this time...he could experience not finding out.  I have never asked. Never hinted. Never pleaded. Never grumbled about the fact that that's what we were doing.  We had talked and he had asked about my excitement which I was making an effort and trying to muster up.

When he asked this question...I started to cry.

I'm an emotional person ... but not a cry-er.  I seem to be able to hold that back most of the time.

He spoke up and said "I think you just answered me..."

He then went on to say that he realized he didn't just want this for him...but he wanted it for me. He wanted me to experience something...that I didn't want to experience.  He talked about how pregnancies are hard for me. This one ... was the hardest.  I get extremely sick. Throwing up around the clock..meds and all. And...well...I'm running a business and homeschooling and have 9 children.  So it wasn't easy. Add the complete shock factor of the pregnancy itself...and it was a lot.  But he said he always sees a difference half way through the pregnancy when we find out the gender. Fresh excitement. Planning. Shopping.  (bargain shopping ;). Connecting.  Talking to the by name.  He said that just didn't come this time.  In fact...he saw the opposite.

He looked at me and said "this is nothing you said, did, implied, asked for ... this is my gift to you. I want to find out the gender.  I also promise I will never bring it up in the future as something you couldn't have done. This wasn't about you caving...this was about me giving a gift to you. I realized how important it was and I was keeping something so deep and meaningful from you.".

I'm sure I cried again. I wasn't saying much during this entire conversation.

He finished with ... "let's plan another date for tomorrow and think of a fun way to find out".

I felt like someone just breathed a big breath of sunshine into my soul.

Yes. That strong.

I know so many love the surprise in the delivery room.

I also know we have 9 children...girls and boys and everyone thinks we have everything.

We don't.

I gave all of Izrael's clothing away.

And everyone else's is long gone.

I love to plan. Prepare. Shop. But most importantly...connect.  I've definitely felt an inability to connect with the baby this time.

When we walked in the door the kids were all sitting quietly watching a movie and Taizi was on the floor holding a block. I came up behind him...a few feet back. He turned, saw me..and crawled over towards  He pulled himself up and leaned in for a 'hug'.  It was such a sweet moment ... after such a long week...and such a great night.

So we called our sitter again on Friday and she came back :)

We got the envelope and put it in my purse along with a few Gap coupons.

We went to the mall.  This idea came from a few different things. I know many people do fun things for gender reveal now...but for us ... one of the purposes of the gender in the envelope was to send to my lady who makes all of our personalized baby blankets (please ... if you are looking for one...let me know. She's the very best!) and that way she could send us a personalized blanket to be ready for his/her arrival.

I immediately thought of how fun that would be as a gender reveal! takes a few weeks and there's no way ... :)

A few nights before I was in Gap with a friend and saw 2 precious outfits. One baby boy and one baby girl.  I loved both.  So with that fresh in my mind and coupons in hand we walked into Baby Gap.  Dean also loved the outfits.  We picked one of each. 0-3 months.  So tiny. So precious.  We handed the envelope, the outfits, my coupons and my credit card to the cashier. She was giggling she was so excited to be a part of it!   We told her to hide the receipt for me to sign in a few minutes so I wouldn't see what was purchased and asked her to wrap the appropriate outfit in the gift box.

Back up.

I was 90% sure it was a boy.

Maybe even more.

Biologically we have girl (was on medication for throwing up for 30weeks). Boy (on meds for 16 wks), Boy (on meds for 11 wks), girl (on meds for 28 weeks) girl (on meds for 28wks).  So this seems to be significant.

I was throwing up 2-4 times a day ON medication this pregnancy until 14 weeks sharp. It ended suddenly and abruptly.

I KNEW it was a boy because of that.

Heart rate? I don't even remember what our other babies were!

This one has been on the high 150 side.

In the ultrasound it was 134 then 158 at the end. :)

We went to a nice restaurant and talked about it. We were totally building it up. The people beside us were just loving spying on the moment. The cashiers at Gap were oogling at the idea and us. And we knew that every one of them was thinking this was baby #1.  ... and no. We didn't tell them it was #10 :)

Dean got out his camera and I started untying the box.

My heart was pounding. I know it's a boy!! To say I was a tad excited...would be an understatement...

I quickly flip up the tissue paper and see the tiniest most adorable...0-3month size....little dress! I was SHOCKED! way!  I think we both were! I was so so so so so sure it was a boy!

It was such a great moment. The waitress had witnessed it too and came over and said "ohhh you will love a little girl...they are SO fun...until they get to be about 2 or 3 years...then..." and she smiled and ... we smiled. :)

I love my husband.

I love him based on the fact that I said I would.

I made a promise.

I committed to it.

No matter what.

I vowed.

Yes there are many things he does that makes it easy to love him for. But my love is not based on those things. It's unconditional.

And in the moment of Dean offering this went deeper.  A connection.  It felt like he just reached out and held the hand of my soul.  He saw me.  Knew me. Loved me.  And gave me a gift...I will never forget.

Today I was thinking...again... about how shocked I am that it's a girl. We have 6 little boys...2 biological. It's been a long time since we have had a baby boy! Since Azlan Honor.  And then I had this thought.  He was our second biological boy.  Our boy born with so many challenges. The child...that changed my heart.  And he changed our future. He changed the future of our family.

It was Azlan's journey that opened our hearts to adoption. We dreamed of adopting a child with a cleft. It was the most amazing experience...for us and him. And we wanted to give that to another child.  As you know...God used Azlan to open our eyes but He called us specifically to 2 little boys in the heart of Africa.  Not cleft affected.  :)

Then fast forward to now.  Here we are.  4 adopted sons. 2 healthy boys from Africa. 2 little boys with cleft lip and palate from China.

Azlan Honor.

What a gift that little boy was.  And is.

Someday our children will see the entire picture.  The whole journey.  And see how God used the gift of one little boy with special bring 4 more boys home to their family.

6 boys. 4 girls.

This little girl...being in God's plan...and not ours.  Can't wait to see her journey unfold.

Wednesday, February 6, 2013


I just so happened ;) to hear about an amazing moment and it was an accident that I heard.  

This is beautiful.

Today, mr Zunduka was grounded from the play set out doors for 2 days.  This is a big punishment and it was for something he does all the time. Well it seemed to be the right punishment since he took it pretty hard.  :(  

I noticed a lot of busy-ness in the backyard.  

I asked Tirzah what it was all about and she smiled and said "I really can't say" ;)  But then she needed to ask me for a cookie for the surprise so I found out. 

Zunduka was a little sad I was told about being grounded.  So he was playing by himself more today.  The other kids noticed this and decided to cheer him up with a Winnie - the Pooh style party.  He had no clue. I managed to get in there for pictures to capture the moment. What you can't see is the little hearts behind the pictures.  Really.  That they would think of him...though he was rightly punished for what he did ... and try to cheer him up with a party was really special.  

It was a moment.  

Don't blink!

The best sign ever! :)

The excitement building!

Rosy, dirty faces and all :)


A hat was placed on his head....

And a delivery of all their left over snack combined with a cookie :) (don't you love that Tirzah is wearing Azahria's coat...? :)


And Azlan made a mud cake for him!

It was...simply the best moment.  


So we are recording (of our own free will :) every calorie that goes into Taizi's mouth so they can know exactly what he's had.
Yesterday was a bear.  Or he was a bear :) He refused to eat at all and instead of clamping his mouth...tried to just keep his mouth wide open and then would somehow open the back hatch of his mouth and swallow without ever closing his mouth.  :(  This is a new thing for him as when he didn't want something he clamped his teeth so tight in the past but this is a wide open mouth but refusing to close it.

This morning Dean fed him breakfast, one that he loves. Non fortified.  He did the same thing so maybe it's his new thing. However he ate the whole jar and wasn't upset at all. It looks strange for sure as he doesn't close his mouth.

The more I look at Cystic Fibrosis (due to a friend having a daughter w/ CF) and the medical team's constant suggestion of it...the more this looks like part of what Taizi is dealing with.  If's highly unlikely that any amount of our "whipped cream fortified food" will do anything.  However we'll keep going as further testing is underway.

Thank you all for praying and for offering advice.

Yes there are serious health concerns that are more common like allergies, thyroid issues, diabetes etc that ALL will be ruled out as we go. His testing is very extensive and we are praying we find out soon what's all going on.

Today is sunny, beautiful and we are choosing to make it a beautiful day.

Do the same.


Tuesday, February 5, 2013

Round 2!

So yesterday was day 2 of Seattle appts for Taizi.   There wasn't as much excitement to be going back for Dean and soon ;) We put some great music on and made ourselves have fun.'s a haul.

The kids were great. Izrael has never liked the car...since 24 hours old. Our only child who has freaked in the car. However she does really well and there wasn't a peep the whole way there! We didn't stop once. People ask all the time how many stops with 9 kids. ;) None ;)  We all do potty before we leave, whether you have to go or not...yah yah I know...but if not we stop every 20 minutes for a different child.  It was exactly 3 hours to the edge of Seattle other words great weather through the pass.

We got there right on time, Dean dropped Taizi and I off at noon. Our appt was at noon.  We walked in and instead of screaming bloody murder like last week, he did his other trauma-reaction: fits of giggles. It's not a's a hysterical ( hysteria) giggle.  There were definitely just as many looks as the giggle is very checked out.  He tried this for over an hour. It was almost turning into tears then he'd go back to giggles.

First we saw cranio facial. A different doctor than Azlan had as a baby (thankfully).  She was wonderful. She right away knew his laugh was not right and said "it must be so hard b/c people probably hear him laughing and think 'oh how cute!' meanwhile it's kind of out there isn't it?"  Exactly. It's not a sweet laugh it's totally checked out.  We talked about a number of things and she gave a few suggestions but said she doesn't know his syndrome they are just trying to weave it together.  She mentioned CHARGE syndrome which honestly is like you have eye issues, face issues, heart issues, clefting etc they they put it all under one category.  A lot of concern was regarding his weight. We got a lot of kudos for taking the intiative and pushing him out of his comfort big time but getting a lot of nutrition into him.  The shock is the lack of weight.  She said we were going to meet the nutritionist as well but her concern was it may just be HIM.  That his body is just done growing. We have to check off one thing at a time.

The social worker was amazing. Letting us know a lot of things that were available to help us etc. with so many trips to Seattle.

Nutrition was interesting.  She was completely, whole heartedly BAFFLED at his lack of weight gain.  We went through what he eats and how often and she doesn't get it.
When we talked about the hair growth she said that's the first thing TO grow as it only takes the micronutrients.  She said it shows how very poorly nourished he was in the orphanage to NOT have hair.  We had drawn that same conclusion.
Taizi's history is this: he was found at 3kg.  At 11 months old he was 7kg.  At 2 years old he was 7.5 kg. And at 3.5 years he's 9.5 kg.  So you can see where something went terribly wrong. To gain only .5 kg in 1 year is a problem.  And the growth has been a problem since that point.

1. We are to eliminate formula completely.
2. He is to eat 100% Pediasure through a bottle.  Now before you write me and tell me how awful it is...I know :(.  I know the ingredients. I know the horror of it. I spoke of it very strongly and she said "I agree but you can't fight that battle right now. There is nothing else that gives the FAT, CALORIES and PROTEIN that that does per ounce".  Yes I have amazing protein powder but it doesn't have the fat.  He needs all of it.  It's filled with garbage quite honestly..the 2nd ingredient being high fructose corn syrup but I have no other option right now.  She also said it will be delivered to my door through insurance which is a huge help as his food is costing us $4 a day JUST in pediasure...not counting his other food.  So I'll swallow that one for now b/c in the end we want the same thing: a child that has weight gain.
3. We have to fortify every other food that goes in his mouth. Melted butter. Straight concentrated whipping cream. Advocado. Etc.  The problem is before we decide based on the healthiest options that the taste IS a huge issue.  If he refuses to eat it...we are no further ahead.  The advocado is out.  He won't eat it.  The whipping cream is the most in.  IF you know of a company that has a HIGH FAT, CALORIE, PROTEIN product with better ingredients, please let me know.
4. We have to get him weighed every 2 weeks at our pediatrician.

If he has not gained weight in 1 month we have to consider a feeding tube through the night. HOWEVER she said very clearly...if he does not gain weight with this...there is something terribly wrong that nutrition cannot fix.  Period.

Her words "he WILL gain weight. A TON. If not...we have to see WHY".

Dean and I....are skeptical. We have done so much and sure we'll add a few more calories but honestly he's getting a TON now with zero weight gain and (tmi) no formed poop.  Something is just not right.

Plastic Surgeon came in who was a resident during Azlan's surgery 6 years ago. He remembered me right away and asked about Azlan ;)  He had a resident with him and they were both very onto Taizi.

His priorities are:
 1. Cleft Palate.  His words "While palate repair is done at 1 year for SPEECH purposes and it's highly likely Taizi will never speak ... I'm sure going to give him every chance possible!!" wow. Thank you! Because so are we!  He said he wants palate to be the priority after heart repair. In the spring.  At that surgery he would also remove the ear cycts that leak continually.

2. Eyes. We have now been referred to a specialist and he wants to know more of whats going on with the eye but said included in Goldenhar syndrome (what all 3 boys have) is facial nerve issues sometimes isolated to the eye.  He said however he can operate and help a bit. He will implant "a small piece of gold" into the eyelid to give it enough weight that at night time it will close. He said the concern is an eye that never closes will have problems and can lead to more serious issues like blindness. It will NOT allow him to blink but will allow it to close completely at bedtime.

3. Ears. His preference is to wait til his 10 years to do his ears b/c at that time they take a RIB and make a full ear with it and can make it most 'average' looking.  At age 6 they can operate on the ear but cannot do the rib surgery til 10.  If you operate before age 6 (when ear is full adult size) then you will forever have a tiny ear even as an adult b/c you will stunt all growth during surgery.  Very fascinating.

Cranio Facial came back in and said she managed to squeeze us into a kidney ultrasound and spinal X-ray while we were there.  To say he screamed bloody murder from half way through the day no exaggeration.  Picture screaming and multiply it.  Yes. We went from hysterical laughing as a reaction to fear to screaming.  The ultrasound was a nightmare.  I'm shocked he got any images. It took all of me with a cramp in my back b/c of the length of the exam to hold him down.  I had to leave the room for the xray b/c I "have a chance of being pregnant" ;)

Cranio doc called our ped immediately and got a plan going with him with the amount of blood work etc she wants done. I loved her. She was young and really attentive.  I think I heard from every professional we saw yesterday that "it's not often we see a parent so informed.  How do you know all this?" Honestly the answer is always the same. This is my child. I'm not coming in here like a robot....I've absolutely done my homework. Cranio doc asked if I have this huge database in my head and just record everything I hear. but that sounds convenient.

So. The plan.

Dental appt on the 15th in Seattle.
Heart procedure on the 19th (which they stressed his PDA is very significant...his heart is very enlarged).
MRI, CAT SCAN, bloodwork, ABR hearing test, and every thing else we can combine under sedation.
Intense food changes to gain weight.
Palate surgery.
Eye exams and evaluations.
Eye surgery.

I got in the van after the appts 5:45.  Yes 12 noon to 5:45.  My head was pounding due to needing my neck adjusted.  I know I know. Why do I wait so long...? My life is a tad busy.  I laid my head on the headrest in the van and almost started to cry.  We are not immune to feeling a tad overwhelmed by it all.  God knew all of this.  He knew I'd be unexpectedly pregnant.  Now 19weeks. He knew Taizi's needs...all of them. He knew this is only the beginning.  He knew it all.  And when I laid my head back I just let my mind go there. To Him.  And that is the only place the peace comes from.  It's this instant transfer from my shoulders ... to His.  I don't need to bear the burden of the stress of it.  He wants that burden.  Every day I have the same choice as you. To choose to live this day well.  Sometimes perhaps my decision is a bit more conscious than yours...but it's all the same.  My child is not dying of cancer in that same hospital. With me helplessly rubbing her feet and helping her vomit into the bin...again.  No. we are so blessed.  Our road is bumpy.  So is yours.  And it's times like this we are so thankful that regardless of where we are in our life...He's always the same.  He's our constant.

Last night on the way home Dean played my favorite song ever. I think. That's hard to say. God has used so many songs to speak deeply to me at just the right time. However..Tenth Avenue North speaks the music of my heart.  They put into a song...what my heart feels and beats.  I've written it before. This time I'll put a link to it. It may not be your style but listen the whole way through.  By the end...I'm in tears.

So...we got home at midnight.  This morning I took his breakfast and added the tiniest tiniest amount of melted butter to it. You could not taste  it...there is no way.  Well what a fight.  This is the nightmare of it all.  I mean a fight.  A gagging, fit-throwing fight. Change and Taizi do not go hand in hand. This is going to be our biggest problem. Feeding him pediasure with whipping cream won't be a problem but fortifying every bite that goes into his mouth is going to be a big problem.  It ended with very little solid food and a bottle of pediasure so that didn't help at all.

It's hard when we get him finally into a routine and we have to change it. It's very difficult. Not difficult as in your healthy baby - difficult.  Difficult as in this little boy is seriously OCD about his food and once you get him in a's very hard to change it.

*** Updated:
thank you for all the notes we have received today offering us tips and advice.  I think I need to clarify. This is not simply just not gaining enough weight. Or gaining slowing etc.  This is a serious failure to thrive not solely based on his body weight. His bone structure is flailing.  His feet are in size 0-6 month robeez shoes...he's 3.5 years old! There's clear indicators that something is wrong at a deeper level. Also the diet plan is not intended to fully cure the problems, as we doubt it would anyway...but there is significant testing going on to find out WHY he's failing to thrive.  Clearly it's not all about nutrition...and may not be about all.  They are fully aware of that.  We have received so many suggestions today of great table foods. Yes...there are many high calorie, high fat table foods that we could puree or are already in puree form (mashed potatoes with gravy) but the big big problem is he absolutely won't eat it.  Remember where he's come from. Never having tasted food ever in his life until we forced it via syringe a few weeks ago.  Now he is eating it via spoon but there's only 2 baby foods he will eat.  We tried adding fats to those foods...even vanilla pediasure and he gags and gags and clamps his teeth shut.  So all table foods and otherwise "great tasting foods" (to us!) are out.  Our options are very very limited.  We can work with his bottle more but texture is really an issue there as well.  Yes intense blood work and testing is underway...even bone scans to see if his bones are indeed showing signs of growth (is in the plans).  The suggestion that has been written to us today that is actually being considered (due to a few other strong symptoms) is Cystic Fibrosis.  The medical team mentioned that a few times yesterday in Seattle.  There will be no stone unturned when it comes to his medical care and what we will do to get him the best treatment possible.  We are not satisfied with a bandaid solution (add fats to his diet) BUT if it's a bridge that allows us to get from here to there...even temporarily...then we will try.  I stated in this post that his history is significant.  Born at 3kg. 7 kg at 11months, 7.5 kg at 2 years and only 9.5 kg today at 3.5 years this has been a serious problem for a long time.  We saw many babies in his orphanage, all on the same deprived diet that Taizi was on and the majority of them looked well-fed and even chubby.  Taizi's is undoubtedly health-related and we (us and the medical team) are committed to get to the bottom of it as soon as we can. :)

Friday, February 1, 2013

Taizi's Dental

Well it was pretty much a wasted morning. We had to have a full dental check and clearance before his heart procedure (that is scheduled for Feb 19th).  We went this morning and they said they simply are not qualified to sedate a child with such severe special needs especially with heart concerns.  Therefore they gave a referral for all of his dental work to be done in Seattle.  Love. Ly.  :)

I hope Seattle gives us a few sunny days at least this month...since we'll be seeing plenty of it ;)