Tuesday, June 18, 2013

Done...for now.

Two back to back treks to Seattle and we are done. And it's good because I'm done. You know...as in 38wks pregnant, done. :)

Friday we went and had Zihao's ear tubes put in and his skin tags removed.  The surgery went really well and it was good to see him have normal reactions instead of trying to charm everyone.  He was very quiet and clingy to mommy.  That shows we are making progress.  I stayed with him until he was asleep and I have to admit that right at the end when his eyes popped up and his muscles went stiff...I could feel the blood drain from my face...and the doctor came close and said "no, no, he's fine. He's asleep this is a normal reaction".  eeeeek!

We were shocked at the instant result. We now have a very soft spoken little boy that talks WAY clearer. We could see these changes in 24 hours post surgery!  Amazing.

We came home and had a great weekend. Our new pool is set up and we are loving it.  It's way bigger than the one we had for the last few years (that was sporting huge slashes this year and had to be discarded) and since we are way bigger...it's great!  We took the kids swimming (I did, Dean was working) and it may have been Zihao's first time swimming, we don't know. He was very very nervous but loved it! So did Izrael!  Our weather has been great so the water isn't too freezing and we all had a lot of fun all weekend.

Monday morning early we were all on the way to Seattle again.  I was non excited about the day knowing what lay ahead. And...I was right. Sadly :)

5.5 hours of me, Azlan, Zihao and Taizi in the tiniest doctor office.  With Taizi going through each phase of either spitting, hysterical giggling, crying and hitting...yah. We were all crazy by the end.

It went really well though.  We saw the whole team for each of them.

Taizi weighed 10.5 kilo which surprised us. We expected much more. He is noticeably chunky but the really good news was he finally grew in height! 2cm taller!  So while it was only .3 kilo in weight change...the height was great news.  We talked nutrition, surgery and heart.  Bottom line is everything depends on his heart.  We were told "he's still in heart failure because his heart is not pumping strong enough post surgery". Never knew he was in heart failure to begin with. Interesting terminology.

We were told Zihao's palate is definitely not closing for his speech therefore very nasal. However since he just had his ears done and is so new to english we are going to wait 6 months and reevaluate before therapy and speech surgery.

Azlan's speech appt was the best.  They were able to hear exactly how severe his struggles are.  And we have a plan. We are driving over 1 hour each way to speech therapy each way at least 1x a week. Yes.  Crazy. However we'll go to Seattle and back to get him the help he needs so this is all good. Quite the commitment but she believes it will help him tremendously.

Not sure I can yet even think beyond that to recall what else was discussed...it was a very long day. We ended it with 1.5 hours at the zoo. yes it's a huge zoo...yes that's even a long time to be at a zoo. :) I despise zoos and honestly this was the longest walks ever and every animal was sleeping.  Ahhhh!  Confirming the little zoo in Idaho Falls was our favorite to date! We did have fun though and had a few funny moments there with the few animals who were not sleeping ;)

So we are home and glad to have Seattle treks behind us for a while. There's likely some for July that we haven't been notified yet and that's good...because right at the moment, we are good with not knowing ;)


Daddy & Zihao post ear surgery

Izrael and Piggy ;)


Azahria Peace :)


Zunduka and monkeys (he loves!)


A bunch of monkeys!!


Looking at the elephant!!


Reading her map as she goes ;)



Chazano and Azlan reading the map


Cave!


:)




:)


38 weeks




Thursday, June 13, 2013

His eyes.

Can you imagine looking into the eyes of Jesus...? When I think of Heaven...that's the first thing I dream about.  Looking into His eyes.  There must be something special about His eyes. I can feel myself entranced...

Today Christina ... looked into His eyes. She's with Him.  She's home.

You may remember Christina is my sweetest friend's niece.  31 years old.  Married 1.5 years. Has a 6 month old baby boy.  Tonight she's with Jesus.

And though, like Tirzah, my mind immediately went to that first moment of her looking at her Savior....I instantly had eyes welled with tears.  Oh the loss for the family. For her husband. For her baby boy.  For her family.

Yet...she was created for this moment.

And my heart tonight is filled with wonder.  Oh we cannot even fathom what He has prepared for us.

What a witness she was to the Peace only Jesus can give. She went through dying...with such grace...with such beauty.

Christina...you taught every christian how to live...and how to die.  Trusting Him.

Wednesday, June 12, 2013

Progress.

It may have been a very long 6 months with lots of persistent hard work...but it's paid off.

All together, we have blown the professionals away with how far we have come.  I say all together because it's been a lot of work.  We knew from the beginning that it was going to be faster progress if we did it vs traditional therapy.  And ... woah.

We skipped the walker. We still have the rx for it.  Unfilled.  Instead we worked really hard on walking and having Taizi trust us. From holding his arms. To his hands. To a few fingers. To one finger. To the very very tip of his finger. To letting go. To him standing on his own, in the middle of the floor...and walking. Unprompted, unassisted. If you could read the look on his face...he is so so impressed with himself and a few times has let out a big laugh in the middle of his walk.

Two days ago he walked from the couch to the fridge. Stopped for a break and then to me. Then he put his hands on my legs. So I picked him up and he laid on my shoulder.  :)

A few days ago we put him in the cozy coupe car. New experience and he hates new.  He had the ultimate fit.  But we are ok with that. (with him :).  We ignored him.  We put his cup about 6 feet away from the car. It's his carrot.  He had fit after fit after fit and even tried to lay down on the concrete, beneath the car and slither out that way. But he was put right  back up on the bench. Dean left for work, I laid in the lawnchair a few feet away and never let him see me looking...though I missed little.  Finally after at least 20 minutes of full blown tantrums he stopped crying.  And blew me away.  He moved that car the same way Izrael and Zihao would move that car. On a mission. Fast. With purpose. As if he did it every day.  My mouth was wide open.  He has so so so much ability and just needs to be pushed.  Dean could not believe it.  There was no hesitation in how to move that car.  But what would have happened had we caved after 10 minutes of screaming...? We'd never know what he could do. And neither would he.

We did the eye antibiotics for a week as prescribed and it did nothing. As suspected.  He has lots of goop out of that eye b/c it doesn't drain at all. This isn't a clogged tear duct it's a non-connected tear duct.  So many 'deformities' of that eye.

He still hates his glasses.

:)

Zihao.  Is extremely emotional. Extremely. He cries at almost everything and we are working through it.  He's also extremely cuddly and loves Mommy and Daddy. And Tirzah. He loves Tirzah.  There's not a child in this family that doesn't love Tirzah.  Izrael wakes in the morning asking for Tirzah.

Izrael is the best. Her vocab is exploding and so fun to listen to.  We all laugh so much at her. We love love love age 2 and 3.  It's not terrible 2's and 3's in this house.  It's the best.

I had my 37week ob appt today. Yes. Full term.  Wow. I will be that lady in the hospital bed holding a new born when it suddenly hits me that she's ours.  I have been so busy and going at full speed in so many directions that it really hasn't hit me. And I feel great.  I feel about 25wks pregnant, not 37.  I am dilating and effaced. The doctor thinks I'll make it just fine to about June 27 when we'll opt for induction.  (the day after Taizi's 4th birthday. They want us to go for his birthday and we said no :).

This weekend we head to Seattle for Zihao's ear tube surgery on Friday and hopefully meet up with the lady to purchase our car seat and stroller system off Craigslist.  Yes. I better get that since I'll be about 38w and 2 of our 5 children were born then ;)  Then we go back again Monday for full cranio facial appts for Zihao, Azlan and Taizi. That should stop those appts for a few months.

Last night I went to the hospital to visit a friend who just had a baby. You would think this being only 2 weeks ago for me would be an amazing experience...it wasn't. I came home and totally cried.  I felt nothing but panic. Panic about the fear of giving birth. Yes. Fear. Yes 6th time. The more I do this, the more aware I am of all that can go wrong.  Panic about feeling yuck and fat afterwards. I know...I know...for me...this is panic.  Panic about the 3 days of hormones rushing through my body and I cry and laugh at everything.  Panic that my sweetest friend might not be home in time.  And you can see where this is going...it snowballed into nothing but panic.

When we got into bed, I read something I don't normally read. Dean loves it, I do as well...but I usually read my Bible, not this book.  But I felt compelled to read the book.

You will see why.

Jesus Calling.  An amazing little devotional that was deeply personal last night.


“TRUST ME and don’t be afraid, for I am your Strength and Song. Do not let fear dissipate your energy. Instead, invest your energy in trusting Me and singing My Song. The battle for control of your mind is fierce, and years of worry have made you vulnerable to the enemy. Therefore, you need to be vigilant in guarding your thoughts. Do not despise this weakness in yourself, since I am using it to draw you closer to Me. Your constant need for Me creates an intimacy that is well worth all the effort. You are not alone in this struggle for your mind. My Spirit living within you is ever ready to help in this striving. Ask Him to control your mind; He will bless you with Life and Peace.”
Isaiah 12:2 – “Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord himself, is my strength and my defense; he has become my salvation.”
Romans 8:6 – The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace.
And I closed the book.  And knew it was for me. 


We had a maternity photo shoot done a few days ago. We've only seen these 3 photos so far in a sneak peak our photographer posted. We had debated doing them but really glad we did. Normally we do these at 34 weeks...this was 37.  




Monday, June 3, 2013

Oh ... my heart.

I've said this before...I'll say it again. I love our children. Like...I love them.  Each one very unique from the others.  Love.

Azlan Honor.

He has such a huge piece of my heart.  And he needs every bit of it.

From the moment I saw his face...my heart hurt for him.

Today...at 6.5 years old...it hurts more.

He hurts.

He's such a beautiful boy. He shines. He's funny. He's witty.  He's cute.

But most people don't see that.  Simply because they can't understand him.  Yes...he was born with a double whammy against his speech.  A child born with a severe cleft lip and palate has a huge speech struggle.  A child born with complete single sided deafness has a huge speech struggle. A child born with both...? That's Azlan.

Sunday for the second time in a row he said "can I sit with you in church?" we said yes.  After church the other kids were playing and Azlan came and sat on the couch.

He was very quiet. Un-Azlan.

He finally said "I don't know if I'll ever have a friend. A real friend.  Someone that understands me and wants to play with me."

:(

He said he doesn't want to go to sunday school anymore.

And then...he sat there...put his hands up to his face...and started to cry.

I looked at Dean and I was fighting the tears.

He said "I try to talk clearly, I really do and I try to hear them...but I can't".

The realization that he is different from the others is hitting.  And my heart broke.

We had a good heart to heart talk to him about friends.  And one of those points is that you don't become so desperate for a friend that you have a friend that is mean to you. And bullies you. We have seen Azlan laugh as others have made fun of him...because at least they are talking to him.  No.  No you don't pay that price for a 'friend'.

Mommy and Azlan went out on a date.

It was the perfect date.

We went to a pottery studio. He got to pick out his piece, which was instant.  He didn't hesitate.  He knew right aways.  He made a bee-line to it.

It was a lion.

"I'm a lion. I love Aslan the lion.  I have to get a lion".

What a great namesake to have.  Aslan the Lion gives his mommy chills every time I see a picture.

I see power. Strength. Honor. Humility.

I see Jesus.

I love Azlan's name.  I love Azlan.

He picked a lion. We sat at a small table by ourselves and we painted. He's a total perfectionist.  Total. It was done perfectly. He's only 6. When he made a mistake he was crushed that it wouldn't be perfect. We talked about how 'imperfections' are what make us so wonderful.

I told him I loved the smudge on his lion.  Because it made me think of how he's different from others. Special. Unique.







We paid for the lion and Azlan said good bye to Aslan as we will pick him up next week, fired and glazed.

We walked away holding hands.

We went into Gymboree. I asked him if he wanted to pick out something for the baby.  He didn't hesitate. He knew EXACTLy what he wanted. And the bib was very important.  And so were the shoes. And the hat would not do. He picked the head band b/c the hat "may make people think she's a boy and she's not. She's a girl".  He wanted the blanket too. And since it was all 60-70% off? Why not. He said he cannot wait to see her wearing it and hold her wearing it because he picked it out.

Then we went to froyo.  He loaded up his treat in all kinds of normally forbidden goodies. We found a table and we sat and ate.  And talked.



He said he felt so special today and that the date was the best one yet.

When we got home I made dinner and I went to the pantry to clean.  He left the table and for the first time...ever...he said "I can heat my food later...I want to help you. You have a baby in your belly...you shouldn't be working this hard.  Can I do it?"  and I looked at him to make sure he wasn't Zion (that's a Zion thing, not a Azlan thing) and said I promise that I'm ok.  He said "no I can eat cold food. I just want to be with you.".

I have tears in my eyes just typing this out.  I love that boy. And yes...life is about to get harder for him. Because now he's older. He's more aware.  He can feel the pain.  He knows he's different.

And he knows. 100% that he is no mistake.  That I would move heaven and earth just for him.

I love that boy.

He has my heart.


Saturday, June 1, 2013

Family.

It's a lot of work.

The payoff is incredibly rewarding.

Though sometimes very very slow.

Taizi is walking.

Yes. Walking.  He can take 15-20 steps. They are labored.  And he tires quickly. But you had to see him 6 months ago.

Amazing.

Today Make a Wish came to our house. Laden with gifts.  Taizi loved the stuffed cow.  He cuddled it like he knew it was special for him.





We visited. They were so kind and loved our family.  We talked about our wish for Taizi as he's not able to articulate it himself. They are going to throw a party for him and asked what his favorite food is! You know it...Gerber baby food BANANAS!! :) That is indeed what he will eat at his party :)

We had a great day with our family. It started with donuts from the bakery, coffee for Mama, a very clean house and the most beautiful, amazing 9 kids ever.  

We went out and got lunch and ate it by the river and skipped rocks for a few hours.  They never tire of it.


Zunduka is quiet and studious.  All day at the park he kept thinking about how he was going to draw and write about this day when he got home. :)

This photo captures Zion's personality better than any other. How can a child be so funny, entertaining, quirky...and yet have the biggest heart ever...? He's a beautiful soul.


Miss Izrael Promise. Walking like the king Sneetch herself. She's a doll baby.


Daddy with Zihao and Izrael


ALL boy. He was whipping those rocks, not skipping! ;)


And then the contrast. We were all laughing b/c she would pick them up and just let them fall out of her hand ;)


Such a little pretty, Miss Azahria Peace.


Chazano & Azlan 


She's a lover.  Came up behind me and was so so cute.


:)


Love this picture of Izrael and Daddy


And the perfect way to end this post.  Yes I snapped pictures while we were praying. It's so beautiful. Love that if I give a snack to Zihao and Izrael I'll hear an older child pray with them, thanking God for their snack, unprompted.  


It was a wonderful day. Filled with wonderful gifts.  9 of them...seen above.  #10 is so very very close...it's surreal.  I'm almost 36weeks...and still in shock :)