Thursday, January 31, 2013

Day 2 of specialist appts is scheduled!

Seattle just called to book Taizi for craniofacial appts for late April. As she was going over the info she was referencing his operated on palate. I corrected her and she said "oooh that changes things". Then she talked about his weight gain. I said "umm...there is none and yesterday Children's cardio suggested a NG tube for weight gain" she mentioned his ears and I said "he's deaf and has bilateral microtia" (deformity of outer ears) and she said "oh...I need a few minutes". She called back 5 minutes later asking if we can come Monday for a full day of appts.  8 hour trek...back to Seattle. :) Absolutely we can.  And we will.  My big level two ultrasound was for that day and I called and they were able to get me in on Tuesday, so no big deal!

We love traveling. Our kids are great in the car...great period ;) And we'll make another fun day of it.


Day 1 of specialists for Taizi!

Yesterday morning we left the house at 8:15 am (you know...with a goal of 7;30...it takes a while to get us 11 out the door ;)...and headed on our way.

We stopped at the outlet mall on the way ... with enough time for me to run like a crazy looking for an outfit for Taizi! :) Yes we both thought the other one brought his clothes for the day.

We got to the hospital right on time.  The moment I walked in with Taizi he started crying. Really crying.  He was going a little wild with his head looking at the lights and recognizing it was ... different. He doesn't do well with change at all. For Children's...I was honestly surprised at the stares and looks...seeing as they see all kinds of special needs. Speaking of the families not the caregivers.

We got called in quickly.  He was weighed. Since he was upset, we opted for leaving his clean, dry diaper and 1 piece cotton outfit on.  I think I stopped in my tracks when I saw the weight.

9.4 kilo.

What...?

When I questioned it she said their scales are very high tech and tested to be very accurate.

What's the question...? Well I'll have to look but I'm pretty sure that's the IDENTICAL weight at the US consulate in China 3 months ago. The weight he was...naked.

Gulp.

What's the gulp...? we have a child that clearly has special needs. BUT...his caloric and protein intake has been multiplied by about TEN daily. With no weight gain.

Ok. So we went for the Echo (ultrasound of the heart). Taizi was stripped to his diaper and wrapped in a blanket. He's screaming. Not crying. Thrashing and screaming. I half lay with him on the bed holding his legs and hands down. If he can't thrash those...he started banging his head. It really was a 2-man job but I was forced to do it solo. Except...it was for 45 minutes.  :)  He was soaked...and I was trying not to be ;)  The tech was so nice and we enjoyed talking over the screams.

Then we went to the waiting room where I fed Taizi and he stopped crying long enough to eat. We were called in quickly and the doctor requested an EKG before seeing him so we did that. Thankfully it was quick because he screamed at the top of his legs for that as well.  By the time it was all over I asked for a blanket to dry him off. It was as if we had dunked him in the bath...that is how soaked with sweat he was.  :(

The Cardiologist and a resident doctor came in. Right away the Cardio. explained his has a PDA. (google it for more details). It's not horribly uncommon. More common in preemie babies. About 8 in 1000 preemies have it and 1 or 2 in 1000 full term babies.  Sometimes, if it doesn't correct itself, it needs to be surgically corrected.

The problem with Taizi is it did not correct itself AND it's been doing this for 3.5 years.  His heart is very enlarged on the left side because of over working and they are quite concerned about the long term, permanent damage to his lungs.  They really examined him and said it's unlikely it's fully the cause of his failure to thrive but it's definitely contributing.  They said to proceed with other specialists meanwhile. We should hear from scheduling this week regarding the cath. appt to correct it. They are concerned about doing this via cath. because of his very small size. He said the specialist (after consulting with him while I waited) is comfortable with attempting it but it may not work and then would have to be a surgical procedure. Being a realist, I always appreciate hearing the 'maybes' and 'what ifs'.

They said one thing that needs to be done quickly is dental work. If he has any cavities this will have bacteria in his saliva and would be a serious concern with this procedure. Therefore we have a dental appt tomorrow (which they will likely have to sedate him for) and if there's any cavities those will have to be filled before we proceed with cardiology.

The Cardiologist also talked seriously about his weight. He asked about the changes we have seen which are definitely limited to his serious hair growth and his fingernails. (nothing below the waist has changed...no toe nails, no fat).  And his weight has not changed at all. He said this is quite a concern seeing he IS eating 10x more calories and protein every day and it's not translating into weight or growth/length.   He said he wants me to meet with our pediatrician here locally and strongly consider a NG tube (feeding tube through is nose) to get as many calories into him as we can and build fat.  He talked about the surgeries he will need and the risk of being too underweight. We saw that first hand with Azlan. He was a very chubby baby pre palate surgery but lost an enormous percentage of his weight post palate surgery and had a very rough recovery. Well Taizi cannot afford that.  So...with the absolute best interest of Taizi's development in every way in mind...we will discuss this option.

And...we left with warm hand shakes and comments of how 'honored they were to spend time with me today' which was quite humbling.  No we don't think we are amazing...and yes we do think Taizi was worth moving Heaven and Earth to rescue and God thought so too.

Thank you for praying for this day.  Many of you have asked how we are doing. We love him.  We love on him and we love him.  This is his journey, his story and we are in it.  Whatever it takes to help him thrive...we will do.  We weren't disappointed. We weren't anxious.  We went praying for a diagnosis and got one.  I asked the Cardiologist if we should be excited that "this is all it is" and he hesitated and said 'could it be worse? absolutely.  So..sure. However...I haven't seen a child this old with this problem and that is very concerning.  It's highly likely he has long term, permanent damage. We operate on infants to correct this.  Is it good news? No. But is it life threatening...no because he's now diagnosed and we'll do what we can to correct it."

This was immediately after the Echo...still screaming.  

This was after all testing, a wet, exhausted, almost content Taizi just laid in Mama's arms for a few minutes.


Monday, January 28, 2013

Life.

Sunday we took our good friends out for lunch. Yes it's really easy getting a table for 13 (including our friends) ;) and it was like a breath of fresh air!  I hope you have friends like that.  Older than us. Wiser than us. And just plain life to be around.

Sunday afternoons has become the chosen day for Mommy-dates. Last week I took the 4 older boys to a restaurant of their choice and then to Target to buy a little car and chocolate bar.  This week it was Tirzah and Azahria.  We went to the mall where we got some amazing deals on clothes for them that was much needed...then to DQ for the treat of their choice.  I love the one on one (or 2) time with our kids.  I remember someone saying in a Q and A show a while ago to the Duggars (19 and counting) about being concerned about how much time they actually get with their children. Mr Duggar replied with something to the effect of that they get more time than most American families spend with their 1.5 children....and I would totally agree.  We teach our children...date them, play games with them...and have every waking hour with them.  And most importantly...we really believe in dating them to spend that individual time with each of them.

Taizi has been off this week. There's something not right. I know...I know...we really need those diagnosis-es.  We are working on it.  I said to Dean tonight "I just haven't seen a glimpse of joy in him in the last week" and he looked at me and said "I've never seen joy in Taizi" and it was this moment of ... you are right.  But this week has been more. His coloring looks bad. He's started sweating again (that disappeared when we removed his 2nd-in-a-row-bottle (his heart couldn't handle 2 back to back)...but that's started again.  His body has this very unique strong odor when he sweats...don't think I've mentioned that before. It's really distinct. Not a normal body odor smell.  It's the sign of something more serious though as children's sweat doesn't usually smell.  In fact...if you hold him after he has sweat...it's very difficult to get the scent of your hands no matter how much you wash them.  The kids will sometimes say "I wanted to hug Taizi ... but I couldn't. There's this strange smell" :(

Well...good news today...is instead of waiting another month for a local cardiology appt...we got one for Wednesday in Seattle.  After the care Azlan received there ... or lack of it...it's difficult to go back...however...we do believe they have the best equipment, doctors and ability to help him with all the issues he is facing.  So...just like that...we will pack up our crew and head to Seattle on Wednesday morning (about 3.5 hours drive each way).

Tonight the kids were all tucked in and Dean and I were downstairs....we heard the pitter patter of feet come down the hallway and lightly...down the stairs.  I turned to see Zion.  7 years old....and though the goofiest of the boys by far...also the one with the hugest heart.  Well his lips were quivering and his eyes were filled with water...and he came right up to me on the couch.  "Mommy...I have a confession....I did something really...I just shouldn't have done.  There was a big blanket on my bed that I thought smelled funny...and I heard the washer going...so I had an idea. I took it in and put it in the washer. But...it was too big to close the lid...so I took it back out.  Well...it was full of water and I didn't know what to do. So...I dragged it down the hallway to the bathroom and got it into the bathtub. It took me 3 towels to wipe up all the water off the wood floor...and the blanket is still in the tub." I'm listening and his eyes go down..."Mommy...I wanted to tell you because I know I never should have done this without asking you and it was a bad bad idea" and I looked at my boy and said "thank you for coming to tell me. That was the right thing to do.  I will take care of the blanket" and the tears started to fall. "thank you mommy. I'm sorry. I won't do anything like this again without asking if it's a good idea". We heard his steps slip into bed and we both just started laughing. Yes I need to write more of these stories.  How will I ever remember them all?

Today was my first OB appt at my new doctor's office.  There's 2 reasons I switched mid way through my pregnancy but one is because of hospitals to deliver at. We live where there are 3 large hospitals and many of the OBs only deliver at one.  So a few friends recommended this office to me.

I walk in and hear KLOVE playing in the office and the 2 receptionists discussing their Bible study in Romans. That was different!  I waited one full hour before going to the receptionist and asking if there were any problems or... (I hate confrontation...the only reason I went and asked is Dean had an appt for the van at a shop) they called me in a few minutes later.  As soon as I met the doctor I knew why it was worth the 1.5 (in the end) hour wait.  She was so real and genuine.  She asked why I switched and I told her about the hospital. She said "what is it about that hospital?" and I said..."well having delivered 5 babies there in the last 9 years...I just find this arrogance that they are the best and their level of care isn't..." she bent over laughing and said "I've never heard a patient say that but us OBs say it all the time!" :) She measured me at 20cm (20wks) and I'm 18wks.  I usually measure cm for wk perfectly but that's within normal being only 2 wks off.  The heartrate was in the 160's and we booked our big ultrasound for Feb 4.  She said "are you excited to find out the gender?" and I immediately said "I can't wait...however...I must...until June or July" :) She laughed when I told her I had made a promise knowing #5 bio was the last bio...and here comes a total miracle baby...;)  Tirzah thinks it's the most ridiculous thing ever why anyone would choose to wait on the gender. Wonder where she gets that from...? ;)




Saturday, January 26, 2013

Had to share...

Something completely not related to the children ... well... ok...sorta...

This is the first time in 22.5 months that our master bedroom...has had no babies in it! :) Izrael has slept in here since birth (NOT co sleeping ;) and Taizi has been in here since end of November as well! Well today we moved Taizi's crib to his room and Izrael's crib is in the girls room.  She chortled...yes...chortled... (such a Jon Procopio word) down the hallway she was so excited to be moving in with Tirzah and Azahria ;)

And I...have my feet up on our sectional couch in our bedroom. For ... the first time in 22.5 months really...as normally a baby or 2 would be sleeping in here. 

That's all.

I hope you all had an amazing Saturday. I did...one of my closest... closest friends and I went for lunch. 

Friday, January 25, 2013

Crazy.

Crazy...crazy...update.

After only 3 days of exclusively sitting, talking, playing and hugging Mommy and Daddy...Zihao has totally come alive! He spoke several English words to me yesterday! Um...we have been with him for over 2 months and all we have heard is MOMMY and NO ROCCO. That's it.  This is huge!

Also...he didn't even try to go to the kids yesterday...instead clung to me like my shadow all day and evening!  When Dean came home last night, he RAN to him for a hug and talked away! Dean looked at me like "what...?"  :)

Oh...and Taizi!  Now that we are on day 2 or 3 (I forget...think it's 3) of rocking him while he eats...what a difference.  He locks eyes with me almost the entire time and doesn't attempt to do his hand motions.

In fact this morning I put him in the high chair (we need 3...have 1 ... lol. Yah) and fed him 1/2 a jar of a bananas with a syringe and he OPENED his mouth every single time!!! Then I put just cold whole milk into a 5 oz bottle and sat down to feed him.  He was clearly full as it took forever. Especially considering there is a massive hole in the top of this bottle. I decided to hold both of his arms down this morning while giving him his bottle so that he would be totally dependent on me.  He stiffened for a minute and then 100% relaxed in my arms. Never once did he bring his hand up in his face to do the motions or to hold his bottle!  I did have one hand over the top of the bottle or that is where his eyes go.

Had to pause in my busy morning and post a quick crazy update. :)


Thursday, January 24, 2013

Quick update.

We spoke to Lifeline's social worker this week about Zihao.  He's just not forming a strong attachement with Dean and I.  He talks to the kids, plays with the kids but with us he's kind of lifeless and absolutely refuses to talk. Say "thank you"...? He just looks at us like we have 2 heads.  Understandable...except he says it to the kids all day long.

When Dean's family left after spending 6 days here (and not giving him one on one attention as requested)...Zihao sat on the couch for 3 days, sad and crying.  It was awful.

When we explained this to Lifeline she said this is sadly...too common of a story. She said our first step is to limit his time with our children. :(  They can't help him, hug him, serve him, etc.  We have to do that. 100%.

She said the next step is if this doesn't work then we have to keep him isolated. No taking him to the store, restaurant etc.

I told her I'm not that excited about labelling him as RAD (reactive attachment disorder) b/c it's too commonly thrown around in the adoption world ... and honestly not sure how labeling has helped anyone in life.  She said she was excited to hear that as she agrees.  We do want to help him and love him and nurture him but not label him.

We know he has attachment issues but we also believe he will be a healthy, thriving child very soon.

She said regarding his sadness for 3 days after family left that she does see that and it's because he was assuming that since new people came...they were likely his new family and he was going home with them in his mind.  It's so sad to see the turmoil that must be in his little mind to not yet understand we are his forever family.

So it's day 2 of implementing these changes and while he's definitely not talking...he's smiling. :)

Taizi...we are now feeding him by holding him.  This is a bit of a big deal as he clearly has never had it yet it's so essential for bonding and attachment.  He fights b/c he want to be on the floor holding his bottle himself.  He gives no eye contact but we have to cover the bottle or else he just crosses his eyes and stares at it.  So today...I wish it was video'd...I had to put one hand behind my back or he squeezes the bottle and often bursts it open all over his face. So one had was behind my back and I was holding him in an infant, rocking position. The other hand was on his bottle.  Then I put my hand over the top of the bottle and kind of touching his face.  I was in shock. He relaxed and stared into my eyes the entire time!  This is such huge progress...that 95% of me wants to think it's fluke. Except it was about 7 minutes and never looked away.

An update on feeding...We now can do his entire jar of baby food via syringe in the morning for breakfast. I got chills typing that b/c most of you have no idea just how far he has come.  It's nothing short of amazing.  Then we give him a bottle of formula. We do have to buy more bottles so we can use them properly with the valve without cutting the top of it ... b/c simple milk or formula is too thin to go in it the way it is.

We had a big moment last night when Dean, again, was helping Taizi go up the stairs. All of a sudden...he picked up his left leg and fully climbed those stairs holding Daddy's hand. I'll get a video of it...seriously...amazing.

I had an incredible moment the other night reading in Matthew...I'll write about it later when we have more time.

Dean told me he has a new favorite song the other day...and played it for me. I love it.  Love...it.  It really puts into words the way we feel about every day right now.

Take a moment and listen: (the video is a little quirky but read the words and listen...)

http://www.youtube.com/watch?v=4omFQJEAAVc


Monday, January 21, 2013

Beauty...more than skin deep.

Tirzah is our 9 year old daughter. She is beautiful.  Really beautiful.

Two days ago I had finished teaching the children and was making lunch.  Taizi was on the couch playing with blocks and saw me start to make his bottle so he leaned over the couch to watch.

Tirzah said "Mommy...I really want to adopt a little boy just like Taizi someday".  I said "that's awesome!"  She said "yeah.  I love his bent ears and how tiny he is and well...I'm kind of sad about something..."

Me: "what's that?"

Tirzah: "well. I just don't think I'll find a child JUST like Taizi."

Me: "there are so many children with special needs ... "

Tirzah: "I know Mommy...but I want one JUST like Taizi. Bent ears. Tiny.  Totally deaf. Different eyes (one doesn't blink and is a different shape).  Doesn't walk.  Only eats out of a bottle. Doesn't talk. Cleft lip.  Do you think there's another boy JUSt like him...?"

:)

Me:  "well you are right. There is only one him.  Why do you want to adopt a child like Taizi?"

Tirzah: "oh he's perfect.  Like there's so many beautiful children but ... Taizi...he's super special.  I just love him. It's like he's perfect.  I wish I could have adopted him."

What a beautiful girl.

Saturday, January 19, 2013

Pictures.

Some photos from the week before New Year's when Dean's family was here.

We went to a big indoor gym. It was only for children age 6 and under so all the big kids had to "be watching a little child". It was cute to see who each child went to.  Zion took care of Zihao.


Izrael and Chazano stuck together like glue!


Zunduka took his first cousin, Hope, under his wing.  (Both children were orphaned and abandoned in Zambia, Africa. Both are loved today. And now 1st cousins.  Love.


There's Chazano taking care of Izrael :)


Dean was with Taizi for part of the time. I had him for the rest of the time. There was this toy mower (that would flip over without Dean holding it at the front) but Taizi loved it.  Notice how he walks a few steps...then stops to stare at his hands...it's just engrained in him...


Here he is...looking a little distressed but he kept initiating walking forward...


Pushing the mower...and again staring at his hands.


Azlan in the tunnel ;)


This was cute. Taizi was with me and I put him on the mat and he started to crawl. He was on a mission, so we kept following him...and I'm not joking...he crawled all the way across the floor to right in front of the door. He soooo wanted out of there!! 


Cousin: Hope!


1st cousin Mikayla and little Hope ;)


Mama was blowing on his face and he was laughing ;)


:)


These next two pictures are from 2 days ago. I was teaching Tirzah and Zion and Taizi was sitting on the couch. I looked over and he was standing just facing towards us.  We didn't have eye contact but I thought these pictures were cute!



:)



Don't blink...!

Because the little glimpses we get often occur in a blink...and you'll miss them!

So thankful I'm home 100% of the day with our children and don't miss a moment. What a gift!

The other day I was teaching Tirzah and Zion school and Taizi was in his walker.  He was singing away and I went over and got right in his face and starting talking to him. I got no eye contact.  I got closer and kept saying "where's your mama? Where's your mama?" Tirzah and Zion thought it was quite funny b/c I'm talking and laughing away, we know he's deaf, and even though I'm right in his face...he's looking everywhere BUT at his mama! ;)  I started blowing on his face a little as it's one of the only ways he laughs (in a response way).  Still no eye contact. So I'd blow on his face, he'd smile and I'd say "Where's your mama?".  The kids were laughing away at the counter.  All of a sudden, with no eye contact he grabbed my face. One hand on each cheek...and came super close to me...eyes all over the place, never at me. And just lit up in a smile.

And it was definitely, as my friend says, a "freeze frame moment".

A moment when you stop and thank God for not missing it.  Had I gotten up one moment sooner, I would have said there was no connection, no moment.  But wait for it...it was coming.

So yesterday was Taizi's last day of antibiotics.  Before each bottle I gave him 2 syringes of baby food. Both times he opened his mouth.  To say this is progress is such a gross understatement.  We were concerned what was happening to his heart when we fed him with a syringe just a few days ago b/c that's how much he would sweat, scream and flail.  It's just 2 syringes but it's 2 before each bottle.  And he's OPENING his mouth.

Really, truly amazing.  Don't blink!

So in the last 2 weeks we have a 22 month old almost completely potty trained...our 3.5 year old Taizi crawls as a way of getting around instead of face-planting-rolling-using-his-head-to-push-him....he now walks alongside of the couch for his bottle...and takes a pacifier and keeps it in his mouth (which stops him from spitting which he does a lot)...!  Not only that but all of the kids, especially Tirzah and Zion's...workload in school has been almost tripled so we won't be doing school in the summer...and Zihao...well he still only says MOMMY at high decibels with chinese following ... ;)  Let's see... what else can I squeeze in there? :) Azlan is done his high dose of antibiotics as of today...and his surgery site  flared up again just 2 days ago.  All of the skin is peeling, again...and we are so ready to move on from this infection-era of his life.

In Azlan's world, he can say F, P, and G very well...enough to distinguish them in school and reading which is so huge I could cry!  I wish I could give the credit to intense speech therapy but alas he never once was able to do them there and it's only been since we've pulled him out and do the therapy at home with him!  After sitting in years of speech therapy sessions...I think I've seen it all for a while and we seem to be having way more progress at home.

I honestly can't wait to have Zihao's full hearing tests done to see what we are dealing with and how we can help.

There's the update.

It's Saturday.

Gingerbread cake is in the oven and it smells good.

Date night tonight and that's always good.

:)

Secret of being a happy mama and daddy of almost 10...? Date. Often.  Out of the house!

:)

Thursday, January 17, 2013

So excited!

Ok so you know of our feeding efforts with Taizi. Part of it seems to be his bottle goes to the very back of his mouth (yes, it does) and we've wondered if he's tasting what he's eating.  We put the same exact food in a syringe and he screams, clamps his jaw, gags etc.

And we keep doing it.  It's so much easier ... not to. But what's best for him .. is to keep trying.

Well he's now on oral antibiotic 2x a day. He's on day 5.  The first few days we would catch him by surprise right before his bottle, quickly squeeze the syringe into his cheek and he'd get it down.  Yesterday...he OPENED his mouth when he saw us coming with the syringe! Ok this stuff can't taste good!  Soooo last night (haven't for a few days) I gave his medicine, he opened his mouth...so I quickly put his syringe into his bottle and filled it.  I went and squeezed it into his mouth. He honestly didn't seem to love it...like he likes the meds more!

So today I did it again.  Only this time after the first syringe of food, I went and got a second one.  For the second one he just stared at me.  I waited. I just held the syringe in front of his face.  He looked at me. Had his mouth closed. I just waited. And I'm not kidding...he OPENED his mouth for the second syringe of baby food!!  Ok I was so excited, I can't even tell you!!

Serious progress.  It's baby steps but it's moving the direction we need to. For his growth and development.  Had to share ;)

Wednesday, January 16, 2013

The bigger picture.

Oh the surrender of our hearts it took to be where we are today.  

The questions that came when people first saw those first photos of Tai Fu An (Taizi).  

"Now...how is he....mentally....?"

"Will he...even...know..the difference of being in your home vs the orphanage...?"

"What does the future hold for him...?"

"Will he ever function...normally...?"

What was God's purpose in calling us to Taizi...?

Well we definitely don't see the whole picture ... but we see glimpses of it.

His progress is slow. But present.

The progress inside of us...however...hasn't been progress at all. It's been more like 'heart transformation'...

Oh yes...God was rescuing Taizi.  He knows the difference...let me tell you.  He's at peace. He's not living in fear. He's not traumatized.  He's not afraid.

But He was rescuing more than Taizi.

He rescued us.  From who...? I'll suggest...from ourselves.  From our own selfishness.  From our own ideals.  From ... us. 

And He's doing a big thing in so many other hearts as well. Because of Taizi.  Amazing isn't it?

That a child so developmentally, mentally, physically...delayed.  Non verbal, non mobil, completely deaf...and challenged in so many ways...could truly impact so many.  Isn't that incredible...? (What in the world could YOU do...could YOU impact...with all you have been blessed with....? Food for thought..)

Today I received a message from someone I don't know well. But someone who knows us. And knows our story.  Someone who has followed our journey. I asked her for permission to post this here anonymously ... and she said yes.  The reason I wanted to post it...is b/c it is truly one of many many similar messages we have received regarding the impact tiny, frail little Taizi has had on their hearts.  And it's constantly made Dean and I think about really...the bigger picture of rescuing Taizi.  

To each of you that have shared your hearts with us ... thank you.

Here is my friend's message:

I just wanted to send you a little note to tell you thank you for all your posts on Taizi. I have been enjoying hearing about your journey with adopting all your boys, but God is using Taizi's story to teach me about myself. 
From the time you picked him up from the orphanage, I have seen this parallel of God rescuing me and wanting great things for me, just like you do for Taizi. But even though I've been rescued, I sometimes live as if I was never rescued at all. I am happy to stay in my own familiar surroundings, and not step out. The muscles that we need to fully trust, step out in faith, show generosity, or compassionately love, are built slowly. They take time and practice to develop. God comes along side me and lovingly takes my hand to help me up, but I can be so stubborn and want to stay lying where I’m at. Thankfully, God has much bigger plans then what we can understand! 
When it comes to food, I am perfectly content to stay with my soft liquid diet of God's word, not realizing the many morsels I could enjoy, if I just gave up my bottle for a spoon and dug a little deeper. I want my old ways and God wants more for me. He sees the future and knows that life is far better outside of the "crib" that I am used too. It has brought me to tears to think how patient God has been with me. He has so much that he would love for me to learn, and so many ways to grow, but I am content to stare at a screen (Taizi likes ceilings) and be so busy with my life (Taizi likes his hands) and tune him out. 
I hope every once in a while he sees a glimmer of hope in me: a smile his way, a word spoken to him with sincerity, or just simply trusting his plan. He gave so much for me, and yet I am content to stay in my shell. Taizi is learning to walk, eat solid food, and trust his father. I am on the same journey. 
There are so many more parallels I have enjoyed, but this was supposed to be a ‘short’ note  I just wanted to thank you for what you have shared and tell you how much it has helped me. I know Taizi’s story has been one of rescue, but I am so grateful it is also one of growing and learning  You have such a very honest way of writing, and it has touched my heart more than you will know 

Saturday, January 12, 2013

H...o...p...e...

Big baby steps.

So today Dean and I were sitting in the living room and I sat Taizi on the floor. He was rolling from side to side staring at the ceiling.  You can totally tell what he's looked at for most of his days...for years.  He always just watches the ceiling :(  Well he sat...and then we started talking and I looked over at Taizi to see him crawling on a mission.  He went to Izrael's toy ride on train, stopped right in front of it...and leaned into the wagon and took out 2 blocks.  He then did all sorts of hand movements with the blocks. We were just watching.  Then he leaned his whole head in an exaggerated fashion into the wagon to see more  blocks.  And one by one...he pulled them out.

I looked at Dean who was clearly thinking along the same lines as me.  He quickly said "See that is big. That is big big progress. That's amazing".

I don't want this small picture to make you think he's acting like this all day.  This is a first. 99% of his days are rolling, staring at his hands...us putting toys in his hands...him throwing them and staring at his hands...us putting something to stimulate him in his hands...him dropping it....him sliding to the wood floor and rolling his head back and forth on the wood floor....singing his little tune and staring at the ceiling...me taking him back to the carpet and sitting him in front of blocks...him rolling to the floor and rolling his head on the wood floor...me putting him back on the carpet. You get the picture.

But.

Every now and then we get a glimmer of hope.

Hope that there is more going on inside that little head than 99% of his awake moments would tell us.

It's just that 1%.

It makes our jaws drop.  And all the forcing ourselves not to think about the tomorrows that seem so daunting and progress-less...

That one moment changes everything and breathes something called HOPE into our lives.

We are no different than you.

Our minds can travel further than they should into the land of quickly seeing him at 5 years...7 years...9 years...12 years...15 years...22 years...still in a diaper. Still the same motions. Still....

And then that glimmer of HOPE comes into view.




Friday, January 11, 2013

A day in the life of.

:)

You really want to know? It's more organized and less chaotic than you may think ;)

The kids don't rise at 6am...they get up 7:30-8.  They are allowed to sneak quietly downstairs and watch a very child-friendly show til breakfast.  Taizi wakes late, allowing us all to get ready for the day before his first bottle.

Izrael and Taizi are in pack and plays in our room. Yes our room is massive.  There's also a full u-shape sectional couch in there... :)

Breakfast happens...we've been doing a lot of hot breakfasts lately and the kids beg for cereal. Too funny.  That's actually easier.

We make Taizi's bottle and put it on the other side of the room from him. He, without prompting, crawls to it.  His bottle consists of half a jar of baby food, a few oz of hot water, rice cereal to thicken it (otherwise it will just spray everywhere as there's a huge hole in the top of the bottle for him to just simply swallow), 1 scoop of formula and this week...a capsule of echinacea to boost his struggling immune system. I tell you...he lacks taste buds ;)  He crawls to his bottle and immediately does a face plant into the carpet so he can roll over to drink it.

After breakfast the kids double check their beds and that teeth has been brushed then we start school.  Zihao and Azahria play upstairs.  Tirzah and Zion go to the counter and I now sit and stay there until they are done. I've doubled their work load to make up for our lost time after China and they are doing it in 1.5 hours.  Amazing what happens when Mama sits there and there is no day dreaming ;)

Then Zunduka, Chazano and Azlan come down to the table and we do their school for about 1hour to 1.5hours.

About this time is Taizi's next bottle time.  It can be anything from half a jar of peas or bananas to Pediasure thickened with rice cereal.  Or if Dean's making it...it can be a disgusting mixture of all three ;)  Sometimes we will set the bottle on the table and put him on the other side of the living room. He'll crawl to the table and pull himself to a stand to get the bottle. It's an obstacle course but it's the only carrot we have for him...his bottle ;) He can't figure out how to get back down to the floor so often he will stand there to drink it...but we carry him to the floor.

We are now substituting one bottle with the same mixture in a syringe. Oh heavens it's quite a process. He clamps his jaw shut so tight you have to squeeze his little cheeks to open his mouth and then he's screaming like crazy as you squeeze it in.  Yes.  He hates change and he has clearly never been fed with a spoon or any other method besides a bottle.  Wouldn't you think that at 12 m in the orphanage they would attempt to move him on to a high chair and a spoon? I mean an open palate doesn't affect that at all! Azlan was on solid food at 7 months and didn't have his palate repaired til 11m.  Yes half comes out the nose but they learn how to get it down.

Why are we doing this? Because he's loved too much to let him stay this way.  We know he can progress in the feeding area...but he's not wanting to.  Dean got an entire jar of baby food down today with a syringe.  By the time we are done he's sweating like crazy and so worked up.  We are both convinced he's still on a bottle b/c no one ever tried to advance him past that.

We do lunch. Izrael naps at 1:30-5:00.  I get a lot of work done at that time.  Zihao naps for about 1.5-2 hours and the other children either color, play outside, read books or build legos.  Taizi is usually in his walker or jumper.

Dinner is 6:30 usually.
Taizi often starts falling asleep around this time so the last 2 nights we give him his last feeding at 6 and put him to bed. He takes at least an hour to fall to sleep...not crying..just seems to be his routine.  And he sleeps 12-13 hours.  He doesn't nap and we will likely start implementing a nap into the routine.

After dinner we've been playing a game or something on the wii.  Bedtime is at 8pm for almost everyone.  All kids except for Tirzah and Izrael are in bed at 8.  Izrael just woke at 5 so it's a tad early...Tirzah we let stay til 9:15 ish.  Izrael goes down about the same time.  The house is perfectly quiet.  Blissfully ;)

We pray with all the kids. Do a Bible story. Turn out the lights and go downstairs for a few hours of quiet us-time.

Maybe that does sound chaotic to you...to us it's our life.  It's quite structured and organized :) Today was so gorgeous the kids played outside for a few hours this afternoon...they all came in with perfect rosy cheeks :)





Monday, January 7, 2013

Azlan update

(read post below for full medical update about Taizi and Zihao)

Azlan's head is very very infected today.  As in...worse than it was a few weeks ago when it was bad. The skin is higher than the metal abutment and so red it can't get redder.  My poor boy. It really breaks my heart to see this happening...again.

He has been on oral antibiotic (as a preventative) since April...yes. Daily since April. It seems like we get constant confirmation that it has to come out :( Clearly Dr. Ronald (infectious disease) is correct that the antibiotic has only kept the Strep infection laying low and it's never been completely killed.  Not much more we can do as he was slammed with heavy duty antibiotics in the beginning via IV and apparently that didn't finish it off.

He has an appt with our new doctor in the morning and we'll go from there.

Tonight, for the first time, he said "Mama, it really hurts".  He has a very high pain tolerance and we take note when he says that. (If you saw it, you'd be shocked he hasn't felt it til now!)

Alive! And well! ;)

Ok how was that for an unplanned blog-hiatus? ;)

Dean's family came for almost a week and we needed a few days to get cleaned and ready and well it wasn't the time to blog. Hope you all had an incredible Christmas and started your new year off with a bang!

Here's our update:

Taizi now crawls as his way of getting around! It's really amazing and so is my husband for working with him so much!! He now will walk along the couch as well!  All of this is brand new!

Zihao's talking has exploded! However...it's not all good news....it's all in Chinese!  Yes! With full hand motions and great expressions and and and...the communication is obviously...lacking.  He says "Mommy" and "no Rocco" to the dog and that is it!! However we are increasingly aware of his significant hearing loss which plays a huge role. You have to really say his name loudly to get his attention. He turns his whole head to favor the working ear and even that one, we have reason to believe has significant hearing loss :(

Zihao has not been "well" since gotcha day. Always a runny nose. Always a (empty...non congested) cough.  That is odd for our family...our kids are incredibly healthy and don't catch whatever is going around.  So we are working on getting that immune system Walker-strong! ;)

Today was finally our first pediatrician appts!!! We switched doctors and it seemed to be a 'fluke' find...but woah...LOVE! He's amazing. He asked me why we left our last pediatrician and I said "rather passive when you have significant health concerns" and he laughed and nodded, knowing the doctor.  

He examined Taizi and said many things.
-His head is very large...and may require a shunt.
-His ears are quite deformed and very low on his head.
-His right eye has significant problems and likely related to his brain concerns.
-His open palate is the least of his concerns at this time.
-He listened to his heart...for quite a while...and looked up at me over his glasses and said "Woah...we need this checked out ASAP!"
-He said there is a definite significant mental disability that we need figured out to put all the pieces together.
-He said his plan is to start at the heart...then brain...then work his way down from there.
-He wants EKG, EEG, MRI, CAT scan, Kidney tests, ABR under sedation, Geneticist appts to figure out the syndrome and a slew of immediate bloodwork.
Taizi's weight (with a very weight diaper and half dressed) was 21.4lb and Zihao's was 26.5lb.

After he said all of that I told him we have consulted with U of W's adoption specialist and I was seriously impressed that he requested ALL of her list and more! He winked.

Regarding Zihao: he said he doesn't have any serious things going on with the cough...maybe a slight sinus infection.  Definitely wants his hearing evaluated and the fact that he poops (sorry!) once a week and it's just simply not normal how much comes out of him...

All that said. We will be going to Seattle for the big stuff and attempt to do what we can right here in Tri Cities.  EKG, MRI etc that can be done here. Obviously specialists are not here in the pediatric dept.

There's the medical update.

Feeding Taizi what we have been feeding him....there is a serious 'failure to thrive' not based on his nutrition since he simply has not gained weight.  Maybe 2 lbs total in 2 months and yet his caloric intake has been multiplied by 8 or so a day and so has his protein intake.  The ped today agreed that there's no food we can feed him to make him thrive or grow.

On his way out of the room the doctor paused and said "are you a saint...?" to which I quickly replied "not in the way you are thinking!" he smiled and said "No really...God bless you Janice. I think you are amazing".


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Other news: after my body tricking me into thinking sickness was over for a day and then quickly reminding me...IT WAS NOT I was very very very sick.  However. In the last week I've had no meds and only thrown up like 4 times and feel amazing!  I feel like I could conquer the world! ;)  I'm 15 weeks in a day and so excited to be feeling great!


We got our family photos back and I want to share them.  They turned out amazing and our photographer was amazing. I will definitely refer friends to her! She was wonderful to work with and SO affordable! (these pics are taken from FB so they don't show the entire shots...they are cut off on the bottoms)


Tirzah Liberty ~ 9 years

Zion Courage~ 7.5 years (was born photogenic)


Zunduka Jacob~ 8.5 years (My fave pic of Zunduka ever!)


Chazano Meleki~ 8.5 years (wow I LOVE this picture of him!)


Azlan Honor ~ 6 years (he was so cute, he doesn't like his smile in pictures so he was practicing the week before in the mirror. He's perfect!~)


Azahria Peace~ 4.5 years (she was frozen solid this was Dec. 22nd and it was COLD)


Zihao Ethan~ 3.5 years (one of the 3 smiles he gave during the entire session! ;)


(prince) Taizi Tommy~ 3.5 years 



Izrael Promise ~ 21months (shocked we got her to smile away from Mama...but Daddy was putting her Piggy over the photographer's shoulder and she was loving it!)



LOVE this one of our three girls! 

Daddy and 6 boys!


Mama and 3 princesses!



 The 2 that started it all...;)