Surgery preparation, comparison and explanation **Some Graphic Photos** - a little late-breaking humor

Facial Bipartition and Nasal Reconstruction with Dorsal Cranial Bone Graft

That's the official wording of the Surgical procedure that Rees will have done in just a little over a week.  That's a lot of words, isn't it?  And you might be asking, "What do all those words mean?"  This post will attempt to help our readers get an understanding of what our little guy is going to go through as well as help us to get prepared and ready for the upcoming surgery.  As Molly had the same surgery, she will be compared with Rees to show the similarities and the differences.

**PLEASE note that there are some graphic photos in this post.  If you have a weak stomach or are sensitive to anatomy and/or surgical related photos, view at your own discretion.  

This is what Molly looked like on the morning we arrived at Children's Hospital in October, 2007.  She was born with an encephalocele at the root of her nose.  An encephalocele is a herniation of the meninges (the lining of the brain) which caused her to have mild hypertelorism, an abnormally increased distance between the eyes.  

An encephalocele "happens" prior to the formation of the skull, which, in Molly's case and Rees', too,  caused a hole in the skull just above the nasal bone.  As the skull formed, it essentially just went around the encephalocele.

Although, Rees was born with the same medical defect, his situation is not exactly the same.  His nose and his eyes are significantly further apart than Molly's was as well as his nostrils.  

The hole in his skull caused by the encepalocele is VERY small, however, the herniated tissue (that comes down and is located within the bulging area where his nose should be) caused his nostrils to be abnormally distanced and his nasal bone is concave and completely filled in; he has no nasal cavity, only the spaces where his nostrils are.  The encephalocele basically rests in that depressed portion of bone between the nostrils.

The surgeon performs a "Facial Bipartition" to remove the portion of bone with the hole in it (above is my guess for the amount of bone that will be removed from Rees' skull).  He will also move the eyes closer to one another.  In doing this, the entire front of the skull has to be removed.  The example below does not show the full extent to which the skull was cut in Molly's case, however, it does give a good example of the facial portion.

The bone that was removed from Molly was a little more than two inches.  The bone was then used to fill in the gaps created by the bipartition.  Rees' procedure will likely be similar and we are interested to know whether or not they will provide us with the same details as we were given for Molly's.  

So, what about the "nasal reconstruction with dorsal cranial bone graft" part of the surgical procedure ... ??

Well, that is the part where the surgeon will actually scrape bone from the back of the skull most likely and attempt to use it to contruct the nasal bone that Rees currently does not have.  He may also use cartilage to build up the nose as well.  Cartilage from Brynn's own ear was used to help build up her left nostril during one of her surgeries.  This may or may not be done during Rees' first surgery but likely will be done at some point.

Isn't it amazing what God has allowed man to do?

He has certainly blessed mankind with an incredible amount of knowledge and ability and it is awesome when it is used for good.

Molly was such a trooper and a real fighter!!

We know that is so important to the healing process!

She's still a fighter with a lot of determination and perseverance!

We sure hope Rees has that same fighting spirit.  He reminds us so much of Molly in looks and in personality but we can't really know how he will handle this surgery until it's happening.  He tends to be more nervous when we even enter a clinic or hospital building but so far, even when he has had to get a shot or go through a test,  he has been compliant ... he just gets very nervous, anxious and cries.

His MRI was scheduled for today and we don't expect there to be any issues with the results.  We talked to him about it last night and let him know there wouldn't be any needles, that Baba was going to be taking him and would hold his hand and that afterwards he would get to eat whatever he wanted!  WELL... apparently, things have changed since the last time we went through this, which was when Molly had it done 8 years ago.  Brian called me an hour after the appointment time and said that they had only just taken Rees for the scan.  That was ALERT #1!  He said that because the scan would take 30 minutes, they wanted Rees heavily sedated and would administer the sedation by IV.  ALERT #2!  Because of the length of the test, they did not think it best for Brian to go back with Rees.  ALERT #3!

All the things we told Rees were WRONG!  and HE WAS NOT HAPPY ABOUT IT!  He put up quite a fight!

I was pretty nervous after hearing all of this ... BUT ... I sent out a message and several of you prayed for him and when it was all done, I got to talk to him on the phone and he said "he and Baba eat now!"  Well, that was a good sign ... and at least one thing we were right about!  Thank-you LORD and thank-you prayer warriors!

When I got home from work, he did not give me a hard time and he was in a pretty good mood.  He and Baba gave me the "thumbs up" after the evening shower.  Woo hoo!

We would appreciate your prayers for this little guy and us as we all prepare for next week's surgery.  We also ask prayer that he stays healthy so that the surgery will go as planned.  We will be updating as we are able via the blog, email and/or our facebook group.

This weekend we plan to talk to Rees about the surgery by sharing the "scrapbooks" that I kept on Molly and Brynn's surgeries and even Jonah's surgery in China in April of 2015.  We pray that this goes well and that he will be comforted knowing that his siblings have been through it and that we all love him and will be there for him.  

We are trusting that God will help us to relay the message to him in just the right way.

Additional prayer requests for our family would be: 

• Strength for Brian and Kimberly as we continue to take care of these boys and go through the surgeries that are about to begin.

• Peace and understanding for the children as when one has appointments, procedures, or issues of any kind and receives attention for that point, another child experiences feelings of jealousy and/or exclusion (Molly put it well when she said, "Really?  Now we have kids who are mad because they don't have to go to hospital?  What kids WANTS to go to the hospital?")

• Continued prayers for Brynn who has really struggled on and off since bringing the boys home.  She is a giant ball of emotions as she deals with getting to know them, getting used to them, trying to understand them ... and she experiences a great deal of frustration mostly due to misreading and/or misunderstanding words, actions and intentions.

• Good health for all of us who finally seem to be keeping germs and illness away.

• Continued learning, growing and loving for our whole family.

And, in late-breaking news, just this evening, this story developed on the Prendergast homefront:

Tonight's act of defiance has been brought to you by our dear son, Jonah ... who dared to cut his own hair.  He wanted a haircut so he asked his mama who said "no" because she wanted his hair to keep growing.  He asked his baba who said basically the same thing.  Well, he decided to take matters into his own hands and secretly took a chunk of hair off with the scissors he knew I had in my bathroom.  It wasn't discovered until we were about to have bedtime storytime ... so ... needless to say, storytime was JONAH GETS A HAIRCUT by Baba Prendergast.  It didn't totally fix the mistake but it's a lot better anyway.  

Why is it that when kids decide to cut their own hair they do it right in the front and cut all the way to the scalp?  

Can you tell that he knew we weren't very happy??

And, YES, Baba's workshop is also the family hair salon/barber shop!!

(At least for the males in the family)

When he was done, I asked him, "Are you happy now?"

And then I said, "NO more cutting your own hair!"

Week 9 Update

We made it through the first week back to school after the Christmas break!  This week at school was a lot better for the boys than the first week of school they attended, although, still there were a few hiccups, but nothing too crazy. 

It was this Mama’s first week back to work after being off for the past couple months too.  It was pretty hard for me, … I’ll admit.  Needless to say, I was glad when the weekend came.

On Tuesday, it was arranged that Brian would pick up the kids from school, instead of me because I was working later that day.  When I arrived home that evening, after working a much longer day than I normally would (so quite tired), I was greeted by my two new little sons with a barrage of loud grunting and brute force keeping me from opening the door to enter the house.  They LITERALLY prevented me from entering the house for several minutes.  At first, I thought they were just fooling around and maybe they were ... whatever it way, ... they were NOT letting me in.  Finally, I just gave up and stood there in the hopes that someone would take pity on me and allow me into my own home.  I especially began to wonder about the validity of my role as I knew my husband was in close proximity to Jonah and Rees ... hmmm, wondering how long these two boys could keep their mama on the other side of the door?  When finally I was allowed inside, apparently much to the dismay of Rees, he began punching and kicking at me as I tried to greet him and shower him with affection after missing him all day.  I tried multiple ways to let him know I was happy to see him and that I was interested in his day and he would have none of it as he pushed me away and spoke negatively to me (partly in English and partly in Chinese).  I just had to walk away ... deflated.

I really felt discouraged about this incident.  Rees has not been as fond of me as I had hoped and imagined he would be.  I know every child is different and we have our ups and our downs.  A definite "up" would be the very next morning when he came out of his bedroom after waking up, he immediately came to me and said, "Good Morning, Mama," and then hugged me.  This does not normally happen, folks!

You know ... one thing I've learned in the last few years, partly because of adopting children and partly because of me just getting older and not having the same endurance that I used to ... but "Structure and Routine" really are essentials!!  After that incident on Tuesday and the way that the rest of the week went, I had one of those "light bulb" moments when it struck me that Rees probably was acting out with me because I did not pick him up from school and it disrupted the routine that he was working towards being accustomed to.  The process of "getting used to" something is likely greatly amplified compared to children who have always been with their parents and even though there wasn't anything bad about Brian picking the kids up from school, it was different than what they had been trying to get used to for the previous several weeks when it was always "me" picking them up from school.  I realize that I may have told Brynn that I was working later but I didn't explain it to the boys because I didn't really think they would understand anyway since they don't really grasp the concept yet of my going "to work".  So ... we'll see how it goes.  Next week, there will be another similar day; this time I'll explain it first and see if that makes a difference.

On Wednesday, Rees had an appointment with the Neurosurgeon, which was basically just a technicality because the Neurosurgeon will perform the first part of his surgery, which is to remove the portion of the skull that encloses around the encephalocele.  Well, of course, he said that he wants Rees to have an MRI of the brain "just to make sure there aren't any issues."  So, ... on Tuesday, he will go back for an MRI of the brain.  

On the following Tuesday, he will have his "Pre-Op" appointment to evaluate his eligibility to have his surgery the following day.  Tomorrow I'll post more about the surgery and what he will have done using Molly's first surgery as an example.  In the meantime, please enjoy some photos taken from this weekend.  We decorated for Chinese New Year ( a little early as it's not until February 8, but we have a tight schedule so we did it now) and got to play in the snow!  

Jonah was SUPER EXCITED to decorate after I told him that we celebrate Chinese New Year!!

He made the most wonderfully joyful sounds!!

We put decorations on the windows and hung them from the curtain rods too!

Chinese New Year is a big deal in our house and have two new Chinese dumplings makes it just a little more exciting!!

It will be fun to celebrate next month!

This weekend we also got some more snow (not the hard, freezing kind) so the littles were able to play in the snow with their new snow toys.  They really enjoy being in the outdoors ... which is perfect, since we are that sort of outdoors-y type family!

Making the perfect snowballs!!

A happy little trio ... MOST of the time!!

Hauling the tools ...

It seems like they are immune to the COLD!

Too much fun!

Two Months Home with Jonah and Rees

Happy New Year from our family to yours!!

It's been an eventful couple of weeks since our last post (as yours probably was too with the Christmas and New Years holidays).  I can't believe how quickly the last eight weeks went.  It's crazy how slowly it feels that time goes when you are waiting for something important ... and then ZOOM it just races by!

A few things that kept us busy over the last several weeks ...

... we went over to Calvary Community Church's Family Night: Make Your Own Gingerbread House event.  We thought this would be a great opportunity to have our kids work together to build something.  Yep, that's right ... you read correctly ... we did not get each child his or her own house kit.  We made them work on the same house.    **********************TOGETHER!

Yep!  It was a bit of a challenge at first.  

Everyone likes to take control.No matter what it is.Young and old alike.

We got through it though ... really, we did.

It's about letting go of the preconceived expectation that we dream up in our heads ...

... each of us has to do that sometimes.

The house (.or.whatever.it.is.you.have.to.let.go.of.) might not turn out exactly how each of us pictured in our heads ...

... but when it's done, we can be proud of our accomplishment ...

... and be blessed by what we've experienced.

(And yes, I'm not just talking about building a gingerbread house)

Jonah and Rees made it through their first week of school.  Our "test" week ended and everyone made it through.  Despite the few bumps (highly anticipated), both boys were very happy to have been there and are anxious to go back on Monday.  

Each of them received Christmas gifts from their new teacher and have been asking multiple times during the break about going to school again.

A day after the break from school began, Jonah woke up looking like this!  

We took him in to the nearest walk-in clinic and it turns out that he had a stye. 

We were given instructions for putting compresses on his eye and also some antibiotic ointment to put in his eye for the next week.

Jonah was originally scheduled for his orthodontic consultation on December 29, however, a week prior, their office called us to reschedule as the Orthodontist needs more time to research and meet with Staffing to determine the appropriate plan for Jonah.  So, now he is scheduled to see her on January 28 and then we'll follow up with the surgeon after that.  

He has been a little slow at speaking English BUT he is improving and also has shown that he CAN remember which words to use when speaking. His speech is limited and difficult to decipher ... until you get used to the way that he speaks ... but his understanding of speech and the world around him is quite extensive. 

Jonah is smart and eager to help.  He likes to please, doesn't like to be 'left-out' or feel like he's missing out and is even slightly competitive.  He goes from being highly emotional and easily distressed to being a "tough-y", a "teaser" and rock-solid and unflinching like when he's being given multiple shots/immunizations.   He can be very perplexing ... both boys, ... they're like little puzzles that need to be put together; except, some of the pieces are missing.  Some we have ... only we don't necessarily know which ones they are yet.

More time ... we'll figure it out ...

On Christmas Day, our little guy, Rees, woke up with a 102F fever.  His face was very pink and hot!  We gave him a cold compress, liquid fever reducer and .... a popsicle, of course!  He seemed miserable at first but was quite willing to take the popsicle. 

Then he perked up a bit when Grandma called; he had to break the news to her that we would not be able to spend his first Christmas with her.

Brynn and Jonah were eager to eye up the presents that were around the tree.

Everyone wanted in on the popsicles!

I think my favorite part of "presents" is seeing the reaction on the faces when they look into the stockings!  

Both Jonah and Rees did not seem confused or overwhelmed by all the 'hustle-n-bustle' of Christmas.  They went right with the flow and did really well with it all ... so different than our daughters' first Christmases.

Ben had a "MARVEL"-ous Christmas!!  Every one of his gifts had something to do with Marvel ... of which he is a BIG FAN!

Brynn has been asking for a while for a "mermaid tail".  She likes mermaids and in her child-like mind has imagined being a mermaid so we think her best present was this mermaid costume.  

Do you agree??

Molly is an avid reader and she was very pleased by several of the books that were on her wish list!

Jax liked Jacob's present ... a little too much!!

Rees' fever did not return after the fever-reducer and popsicles in the morning, but by evening, he was one tuckered out little boy.  I got the opportunity to cuddle him as he slept.  Yay for me!!  I oozed with vibes of hope ... that him sleeping to the sound of my heartbeat would bond us as mama and son.  

Rees has very good speech (when he uses it).  He is excellent at repeating words and even tones.  He has shown that he understands the meaning and context of words and phrases that we use in our daily activities.

He is a delightful child, ... energetic, ... curious, ... a little worker-bee ... with giant walls surrounding his heart and his emotions.  He's sort of like the boy playing hard to get ... only he's not really sure yet if he wants to be "got".

Right now, ... his favorite word is "NO".  

He has been the one to struggle the most with illness since we've been home from China.  He's still fighting the leftovers from the fever on Christmas Day ... but he's really a trooper and has barely even noticed any of his symptoms.

We're praying that he stays on the "healthy" side now as we draw closer to his surgery that is scheduled for January 20.  He has a couple of medical appointments before then so he will be evaluated to ensure that he is ready for the surgery.  

  For New Year's Eve, we were pretty low-key (we usually are) and we spent the evening with our friends who the boys are so fond of.  

Jonah decided to play with Jen's glasses!  What a character!

He really enjoyed the festivities and party hats!

 

Brynn and Molly loved getting to ring in the new year with their friend, Maggie!!

Jonah and Uncle Dave 'cheesin' it up!

Even Baba got in on the festive play ...

We wish you all a fabulous 2016!!  

We also hope you will continue to keep us in your prayers ... and, of course, let us know if we can be praying for you as well!

We certainly have a lot ahead of us this year, especially in regards to the medical plan for the boys.  We will do our best to continue to keep you updated.  We appreciate your interest, concern and encouragement ... most of all, your prayers!

God bless you in 2016!!