Update - 6 Weeks HOME!!

Can you believe it?

We've been home with Jonah and Rees for 6 Weeks!! And we've had them with us for 8!!

TWO MONTHS!!

Two months waiting for them, wondering about them, paper-chasing for them ... seems so long and painful ... BUT TWO MONTHS WITH THEM ... I CAN'T EVEN BELIEVE HOW FAST THE LAST TWO MONTHS HAVE GONE!!

This week was Jonah and Rees' first week of school.  Some of you might think that is too quick for them to go to school.  A lot of factors shaped the decision to send them already but most importantly, THEY WANT TO BE THERE.  

That certainly doesn't mean that they won't go through a lot of adjustment as they acclimate to the daily routine of "school" ...

... In just the four days before today, Jonah has kissed a classmate and his teacher's aide, gone around smelling girls' hair, bit the inside of his mouth when following children going down the slide backwards, got a mysterious puffy/bruised eye ... counted, identified letters, learned to spell his name almost perfectly, willingly participates and engages in the activities ...

... Rees, well, our boy Rees really struggled the first few days ... he likes to do what he likes to do when he likes to do it so it was rough for him to have to follow order and structure with the other children.  Before he even joined our family, we sensed this about him ... that he sort of shys away from group activity and participation.  Hopefully, as time goes by, this will soften and he will be happy in a group.  He had several "throw-himself-on-the-floor" fits but by Thursday, he only had one 'upset' and kicked the table (but he did not throw himself on the floor) ... the teacher's aide assured me that this was a huge improvement!  One day he fell asleep and the teacher could not wake him for an hour.  First day, he refused to come in from recess and one of the aides had to chase him around the playground, which he thought was hilarious, I'm sure!  Second day, he was better and lined up cooperatively with the other children as he was supposed to.  By yesterday, Rees had improved a lot!  So thankful!

(the teacher's aide has gotten a lot of nice photos of the boys at school; I'm hoping she actually sends some to me like she said so that I can share them with you all)

Each morning, both boys have shown that they know the routine of putting their things in their lockers, pulling out the morning snack and putting it in the basket, selecting their lunch choice on the smart board (which includes finding their name to move it to the appropriate spot) and putting their take-home folder in the box.  I have watched these things and that has been good for me to see that they are acclimating.  I am documenting these things as much for me as to give an update to our interested readers.  

(learning to trace letters)

(the boys seem to really like art projects)

Hopefully, they will have a great day today!  The children have the next two weeks off for Christmas break.  I will be home with them (which has NEVER happened in ALL my years as a mother!) and I am super excited about that!!!

We will have a few medical appointments over the next two weeks; one will be a follow-up to Jonah's first appointment with the orthodontist who will be coordinating care with the cranio-facial surgeon.  The appointment went well; Jonah was very cooperative and friendly.  The first thing they had to do was take photographs of him, his face, and inside his mouth.  They took this awesome photo and were nice enough to email it to me!!

It turns out that we REALLY DO have our hands full with these two boys who will be having ongoing medical treatments and surgeries virtually at the same time.  Jonah needs to have braces put on with a palate expander as well as the 'jaw distraction' devices that will be surgically placed in his lower jaw.  He will need to be seen by the orthodontist twice a week for THREE MONTHS.  Depending on how his jaw and mouth progresses, subsequent devices may need to be utilized.  Besides that, Jonah will still, at some point, be having surgery to repair the defects in his skull.  The resonating phrase of the appointment was "None of this is going to be easy".  Yikes!!  I'm a little nervous about everything that needs to be done and the timing of everything, especially with me having to go back to work and then needing time off again, and the potential costs that we may incur as their is debate about what will fall under medical and what will be forced under dental.  There's a lot of logistical things that need to be worked out that we are not certain of yet.  We definitely have our hands full but I am doing my best to maintain that just as the LORD worked everything out to bring these boys into our family, He has already gone before us to work everything out with their care and all that it entails.  

My daily devotion yesterday had a "post-it" notation that said this:

"I will not let worry overrule today or this Christmas.  When the King rules my world, I cease to rule or to worry.  All worry dethrones God.  All worrying make me King and God incompetent.  I am going to trust that in the little places, through unexpected people, His perfect story is unfolding and unwrapping all around me and in me, the light overtaking the dark." (annvoskamp.com)

I will cling to that and the words of the LORD in Proverbs 3:5-6 (thank-you, Diane!):

Trust God from the bottom of your heart; don't try to figure out everything on your own.  Listen for God's voice in everything you do, everywhere you go; He's the one who will keep you on track. (this is from the Message version)

When I was a little girl, I loved to play with dolls.  What little girl didn't, ... right?  Well, I had a lot of baby dolls.  I mean A LOT!  I named each one of them ... each of them unique and special to me.  In my mind, they were practically real babies that were mine.

Now, I wasn't the type of girl who got rid of a doll when it got old or traded it in for a new one if it broke or stopped doing whatever it was made to do.  I had a soft-bodied doll on which I accidentally spilled a cup of hot cocoa.  It stained nearly the entire front of her body.  I didn't get rid of her; I just bandaged her up.  I had another doll that my younger brother colored on with black crayon or marker and it wouldn't come off so I pretended that she was attacked and the markings were her scars.  I loved her anyway.  I had yet another doll whose eyes were poked out so I pretended she was blind ... and another whose legs were broken off (I'm sure my brother had something to do with that too).  I remember using the cardboard from a box to make "prosthetic legs" for that doll.

I couldn't bare to get rid of them or not love them just because they weren't "perfect" or didn't look normal.  And I didn't care what anyone thought about the fact that I kept them and played with them ... even in their "broken" condition.

Despite my being a "girl",  I often defended other children who were picked on or bullied because they were different.  I absolutely could not stand it when kids were mean to other kids ... because of such insignificant things ... a haircut, glasses, braces, clothing, a stutter, a wandering eye ... I even got into a few fist-fights (with boys, of course) who bullied one too many in front of me.  Oh, could I share some stories you might be really surprised about!

I'm the same today ... I can't stand bullying and poking fun at someone for the way they look or act ... although, now I know how to control myself and not start a fist-fight.  But there have been a few instances where I thought I might "lose my cool".  I wonder, when I look back on my childhood, if God was preparing me all along for the children I would adopt.  

A few days ago, I met with the kindergarten classes to show photos and  answer questions and talk about the boys with those kindergartners so they are prepared to meet and get to know Jonah and Rees.  Those little kindergartners are so awesome ... they can take almost anything ... way better than most adults!!

All of the other classes were given a similar presentation/discussion by their teachers and I could certainly tell what a difference that made.  When I next brought the boys to the school to pick up Brynn, there were so many children making comments like, "hey! there's the new kids, Jonah and Rees!"  More and more kids are waving at them and coming up to them with a welcoming smile.  

I know that there will still be those who are shocked and don't understand.  At the holiday program the other day, some young man was so obviously enthralled that he started taking photos with his cell phone.  That was a fist-fight waiting to happen, let me tell you!  But don't worry ... I held myself together.

(here's Brynn all dressed up and ready for the holiday program)

I know that there are challenging times ahead but there will also be rewarding moments, I know that is for certain.  Tomorrow is the first day of school for Jonah and Rees.  This will be a huge milestone for them and just the word "school" seems to make them so giddy and responsive!!  We invite the LORD, as they take this step, to envelop the boys in His love and mercy and to shield their hearts and minds from the 'sometimes' cruelty of humanity.  Prayers are greatly appreciated and very necessary.  This truly needs to be a positive experience for them ... for our family.  I will be there with them as much as needed this first week that is sure to be both exhausting and exhilarating for them (and for me).

Jonah also has his appointment with the orthodontist tomorrow afternoon so hopefully we will move forward toward determining the best first steps for his medical treatment.  Will keep you posted about that.  

In the meantime, here's a few photos for you from the last few days.

I gave the boys their first lesson in Welsh Cake making!

They really enjoyed it! 

And this 'control-freak-clean-as-I-go' mama just let the boys have a grand time with their own dough and I didn't even worry about the mess.  

Be PROUD of me, please!

Jonah is very good at focusing on a task when he wants to (wanting to is 'key').  It's important to him to know that we are pleased with him and he is motivated further by positive reinforcement and, it seems, competition.  Rees is less concerned with performance but he has shown interest in positive reactions.  He does not always need to be a part of the "group" and seems to enjoy finding his own tasks, though, he DOES like trying new things and being a 'helper'.

They were thrilled with how many we ended up with and knowing that they had their own batch in their own sack (at Mama's insistence ... ahem ... LOL).  We used the packaging time as a way to practice counting.  They loved the decorative bags.

At the beginning of the week, we found that Jonah and Rees officially had their own school lockers!  

... Ready and Waiting for them ...

They couldn't be happier when they were presented with their very own backpacks for school and they are just SO EXCITED!  (brand new at Goodwill for $6 each - what a deal! and that makes ME excited!)  They are stuffing whatever they can in there to get ready to go to school and they just keep talking about going (in Chinese, of course)!

My mother gave them a few child-size face masks to play with.  I didn't think they would have any idea what to do with them but I sure was wrong!  

They seemed to know exactly what to do once I got the masks on them and showed them what they looked like in the mirror.

It's been so great finding activities that will actually keep them busy and focused for a while!

I could see that Jonah paid very close attention to the medical team that took care of him earlier this year when he had surgery.  He even made believe that he was administering medicine into an IV.  

Of course, there were no "owies" as you can see by the smile on their faces!

We spent this afternoon doing some Christmas crafts with the kids.  

What a great way to spend a balmy but rainy December afternoon! 

This is another activity that kept us busy for several hours.

Such concentration!

We ended up with lots of lovely little creations!

Brynn is getting quite confident with the hot-glue gun!

We pulled out a mini-Christmas tree and they were able to decorate it with many of their creations.

They were quite impressed with themselves!

We hope your holiday preparations are coming along nicely and that, you too, are able to spend some time enjoying simple things that bring such joy!

  

Guess what??

THE BOYS ARE GOING TO SCHOOL!!

Yep, you read that right.  They're going to school!

They have shown great interest in "going" where Molly and Brynn go during the day.  They ask where they are several times during the day and when we drop them off to school and do the pick up, they are eager to see all the children and 'goings-on'.  

(Jonah practicing the alphabet puzzle)

So, for the last week or so, when I go to pick up Brynn from school, instead of waiting out in the car at our designated spot as I usually do, I have brought Jonah and Rees into the school building with me to wait for Brynn inside.

Honestly, this has been difficult, especially the first few times and it has made me wonder why God thought I'd be able to do this.  My honest-to-goodness inclination is to avoid all the attention and go about my daily life sheltered and invisible ... yet ... walking around in public with these boys provides anything BUT that option.

So, together, arm-in-arm with my dynamic duo, we tackle the several hundred steps and children between our vehicle and Brynn.  I take a deep breath (or a few) and I put on my 'strong face' and we go.  

I know it's coming ... I expect it ... I can almost foreplay it in my mind ... and when it occurs, I am sad, surprised, disappointed, frustrated ... BECAUSE IT'S HARD TO SEE ... but I understand.

The first time I saw their photos, I was shocked.  I was confused and curious and shocked!

But as I looked at their photos more and learned information about them, the shock gave way to a certainty that these were little boys, same as any other who needs a family, and it's not their fault that they look the way they do.  

How they look doesn't prevent me from loving them.

I believed the same as I imagined the children at the school who would see Jonah and Rees.  First their was shock and confusion ... even fear for some children.  Each day we go, I can see the faces of so many children who shocked and confused and curious.  I've even heard quite a few comments by children who are "just children who don't understand" and say the first thing that pops into their mind.  It's been hard ... but I understand.  

Each day has been a little bit better.  Jonah and Rees become a little more comfortable in the school (just today, Jonah started waving at various children as we walked through the school).  It just takes time and I wanted the children to have time to see them several times before they will be there every day. The other children are a little more used to seeing Jonah and Rees now and are more curious to know them.  Several children now come up to them to say 'hello' or give them a hug. 

There are still a few children who are whispering about them or open-mouth staring but this is something that just needs more time and prayer.  Your prayers will definitely help and we would appreciate if you would life up not only Jonah and Rees but also the children and teaching staff at their school.  The staff has been cooperative and proactive in helping transition the boys into the school and that is a huge help to be sure!

Photos and information I provided has been used to create a small presentation for the whole school.  Some of the classes have already seen it.  Later this week, I will go to the school and sit in on the presentation for the kindergarten class that Jonah and Rees will be in.  The children will have the opportunity to ask questions and make their comments to better prepare them for their newest classmates.   

I trust that most of the children will accept and befriend the boys at some point, that how they look won't prevent others from loving them.  There may always be someone who will not understand and just as we have done for our daughters, we pray for strength and courage and confidence for Jonah and Rees ... that they will know that they were created by a God who has a Plan and a Purpose, who loves them and made no mistake when He created them. 

We all need that reminder ... it is the same for each of us.

A "Medical Week" ...

So, this was a big medical week and I was not very good at updating ... sorry ... Monday was our big day at Children's Hospital for CT scans and assessment. That update is included in this group. Wednesday was first check-up with the primary care doctor and that went pretty well. Both boys, for whatever reason ... I am not sure, were very concerned about needles as they demonstrated having their skin poked. They did not do this at all at the few appointments they had at Children's ... interesting. They were both shy and quiet at first and Rees was, of course, more timid than Jonah. He sat quiet solemnly and still, almost expressionless through the whole appointment until nearly the end when the doctor went to check reflexes on Jonah (he went first) and when she tapped the little instrument against Jonah's knee and it jerked forward slightly, Rees laughed out loud and had the biggest smile on his face. Well, that broke the ice because after that he was very interested and wanted to be in charge of the 'doctor tools'. At the very end, it was time for their immunizations and it was decided they would have (4) FOUR (yep, that's right) of them, two in each arm. I thought we should have Rees go first so that in case Jonah cried, it wouldn't make it extra difficult on him. Rees began crying as soon as I placed him on the examining table and the two nurses walked in. He knew what was going on and he wanted no part of it. It went quickly, though. His poor little face was a mess of tears, redness, saliva and mucous ... ewwww!! Jonah immediately got up to the table and basically said I didn't need to hold his arms OR stand there with him because he was N-O-T going to cry. Well, I wasn't so sure so I stayed there anyway with my hands gently covering his ... and guess what ... he barely even winced. There was a slight raise to the eyebrows but he just stared straight ahead and didn't so much as make a whimper. I wasn't sure whether to be impressed or concerned. I told him that he was so BRAVE and then he mimicked Rees crying when he got his shots and sort of mocked him saying "that's not me!" Today, Rees had to go to the lab to have some blood drawn so that we can know his blood type. He will need to have extra blood on hand for his surgery so we need to know what blood type he is. Rees began to cry when he realized we were there for him and again Jonah made fun of him. This sort of makes me sad as I wouldn't expect this from him but it also seems to be the way he deals with nervousness and fear. If he is nervous or upset, he tends to mimic/mock the person nearest him. Hopefully, this will change and he will show the emotional support the orphanage staff said he was known for.

CT Education

**Disclaimer - This post contains images of the skull.  View at your own discretion**

When we adopted Molly nine years ago, we knew that she would have some surgery but based on the little information that we had at the time and the fact that she already had a surgery in China prior to us adopting her, we naively believed that her surgery would be purely cosmetic, to improve the appearance of the scarring that existed on her face.

We had no idea that there was anything that needed to be corrected "on the inside".  We were shocked and even frightened when her first CT scan revealed a fairly significantly sized hole in between her eyes.

Molly had to have a surgery to correct both the hole left by her encephalocele and her hypertelorism, which was the widened space between her eyes.  The surgery is known as "facial bi-partition", but is similar to a "box osteotomy" based on the wikipedia explanation below (easier to copy/paste than type in my own words).

Box Osteotomy

Facial Bipartition

Box osteotomy

This treatment of orbital hypertelorism was first performed by Paul Tessier.^[4] The surgery starts off by various osteotomies that separate the entire bony part of the orbit from the skull and surrounding facial bones. One of the osteotomies consists of removing the bone between the orbits. The orbits are then mobilized and brought towards each other. Because this often creates excessive skin between the orbits a midline excision of skin is frequently necessary. This approximates the eyebrows and eye corners and provides a more pleasing look.^[1]

Facial bipartition

The standard procedure (box osteotomy) was modified by Jacques van der Meulen and resulted in the development of the facial bipartition(or median faciotomy).^[5][6] Facial bipartition first involves splitting the frontal bone from the supraorbital rim. Then the orbits and the midface are released from the skull-base using monoblock osteotomy. Then a triangular shaped piece of bone is removed from the midline of the midface. The base of this triangular segment lies above the orbita and the apex lies between the upper incisor teeth. After removing this segment it is possible to rotate the two halves of the midface towards each other, thus resulting in reduction of the distance between the orbits. It also results in leveling out the V-shaped maxilla and therefore widening of it. Because hypertelorism is often associated with syndromes like Apert, hypertelorism is often seen in combination with midfacedysplasia. If this is the case, facial bipartition can be combined with distraction osteogenesis. The aim of distraction osteogenesis of the midface is to normalize the relationship between orbital rim to eye and also normalize the position of zygomas, nose and maxilla in relation to the mandible.^[7]

The photos below show Molly's skull six weeks after her first surgery.

This inside of her face, including her eyes and palate was shifted.

The section of bone that was removed from the front of Molly's skull, the portion that contained the hole, was "recycled" to fill the gap produced by the shift.  

After 15 months, the gap was nearly completely filled in.  Bone will regenerate and using a person's own bone for grafting is better as it is the same DNA working together so it results in a quicker and stronger graft as opposed to using animal bone, for example.

 This is Brynn's skull prior to her first surgery.  As you can see, it is nearly perfect with the exception of the "notch" of bone missing on the right side of her nasal cavity.  

I'm showing these photos and giving these explanations related to the girls' medical conditions when we adopted them so that you can realize with us the magnitude of difference and severity when compared to the boys' scans that were done at the beginning of this week.  

Once again, based on our experience with Molly and Brynn, we felt that we were well equipped for Jonah and Rees' medical situation and what would need to be done for them.  But, once again, we are again surprised by unexpected information.

I am showing this photo of Molly to give you a normal perspective on the jaws and the adult teeth that have not yet come through.  Despite Molly's medical condition, her jaws and her teeth were unaffected.

The scan below is of Jonah's skull.  The first one is the transparency, similar to the one of Molly above.  However, you can see that in the area of Jonah's baby teeth, as well as his adult teeth, the white objects that show his teeth are jumbled and jagged.  Not one of his adult teeth appear to be in the right (normal) place.

So, this is Jonah's skull.  You might not notice it being too different at first look, which is why I provided the above photos for comparison.  

Jonah was born with a very rare and serious facial cleft.  According to the volunteer surgical team that performed the first surgery that Jonah had earlier this year in China, the cleft was a Bilateral Tessier Facial Cleft #7.  

We, of course, told our very experienced, well-known, super-duper brilliant, Professor of a Surgeon and he said something we were not expecting ...

He said that he has NEVER seen anything like this! 

Jonah's cleft was most likely caused by amniotic banding but this is just the highest assumption.  The banding was very severe and went completely across his mouth and face.

The band was in place before the skull was still forming as the skull did it's best to form around it creating the malformations in various parts of the bone and flesh.

Jonah's lower jaw is at least an inch and a half recessed due to the cleft and his palate is extremely short.  The left side of his face was affected more severely.  His cheek bones are not connected as the band went right through the area that those bones would be ... you can see the gap in the photo below.

The back and sides of the skull seem slightly enlarged and mishapen, which the surgeon did agree with, however, the other issues are obviously the main concern.

The next step is to see a special orthodontist in about a week and a half.  She will evaluate whether or not Jonah should have "Jaw Distraction" immediately OR have cranial surgery to correct some of the malformations of his skull.  This orthodontist is a colleague of the craniofacial surgeon so they will determine together the best plan.  More to come ...

And then there's our little spit-fire, REES!!

Just look at his darling and amazing skull!

Rees' skull is NOT AT ALL what we expected!

Due to the size of the gap between his nose and distance between his eyes, we expected his scan to reveal an enormous hole ... like Molly's but BIGGER.  

Do you see that teeny tiny hole in the center of the forehead shown in the photo below?

That is where the encephalocele is.  That's how small of an opening it made!

Yet, it completely obliterated the formation of his nose!!

He may have had a nasal cavity at one point, however, his bone just kept forming and completely filled in behind the encephalocele, which is hanging downward out of the teeny-tiny opening and resting in that recessed area of bone between his nostrils.  

You can also see where a cleft was starting in the portion of the skull that would have potentially affected the soft tissues such as the palate, however, his palate is unaffected.  He has a small hole above the upper jaw contains a "floater" tooth and his upper lip has ever-so-slight evidence of the cleft but the main issue is his nose ... 

... or lack of ...

While we can't necessarily see it by looking at these images, the surgeon pointed out that Rees has two nasal septums and two "something-or-other" nerves ... and two "this-or-thats" ... he said that it was as if the encepalocele attempted to cause the formation of two noses instead of one.

Rees is scheduled to have surgery in January and he will initially have the same surgery that Molly had.  The surgeon did tell us that Rees' condition is much more severe than Molly's and that we should expect his treatment to go in stages.  

We will share more about the surgery as it gets closer.  In the meantime, we are going to try to enjoy December and Christmas and spending time together as we continue to bond with and get to know these two precious boys.

Today, they dipped marshmallows into dark chocolate and then added sprinkles.  

They really enjoyed doing this ... and, of course, tasting them!

They enjoy getting outside into the fresh air ...

... and snuggling up in warm, footy pajamas!!

They like showing Mama their newest creation ...

... and playing airplane with Baba!!

Four weeks in the USA under our belt!

We're doing pretty well ... each day shows rays of hope and steps forward and the boys are really beginning to cling to our family routine.  

We thank the LORD for bringing us this far, for holding onto us even when we felt like we were dangling and we thank the LORD for what He is yet to do in and through the lives of these boys.