Wednesday, June 21, 2017

*Let the SUMMER FUN begin!!**

Summer's HERE!!
And let me tell you ... there is NO HIDING the EXCITEMENT!!

We started off with CAMP!
But, of course ...

... our girls went off to Camp AWANA (our personal favorite!).  

For those who might not know, AWANA is a club for boys and girls similar to Scouts, except that the emphasis is on learning about and having a relationship with God, Jesus, and the Bible.  
Club is held during the school year and the camp is a PERK for those clubbers who apply themselves and complete their handbook during the club year.

We took the girls (plus friends) up to camp and left them there for one whole week!

It is a great experience for the girls and they love being with their friends AND also making new friends.

This was Brynn's first year at Camp AWANA!  Clubbers become eligible to attend when they are going into sixth grade.  This was also her first time to be at a week-long camp.  

The theme for camp this year was America's Red, White, and Blue ... 

Great Theme: Something we definitely need to recall 
to get our country back on track!!

The girls had a wonderful camp experience and they are so excited to go back next year!!

While the girls were at Camp AWANA, we took advantage of the fact that we were going to, for the first time, have the little boys all to ourselves and vice versa.  

We took a few days to do our own little camping adventure and we had a really nice time.  These boys LOVE water!!  They just couldn't get enough of it and as the weather was really H-O-T, we were all to willing to accommodate their requests.  

During our time together, I discovered some fun things to do when taking pictures so we had some photo fun!!!

I just LOVE this one!

Aren't those fun???

In Medical News ... we are really excited to announce that our boy Rees is FINALLY generating new bone!!  

In the photos below, the 1st skull in each one is Rees in February of this year.  He still had very little bone growth and had LOTS of open, unprotected space.  The 2nd skull in each photo is Rees just two weeks ago!  


We are super excited!!!  
We can really see the difference in these 3rd and 4th photos.

We are really quite thankful to God for this gift!  It took a long time but we are finally at this HUGE STEP of improvement.  PRAISE the LORD that He has brought us to this point.  

Monday, June 5, 2017

Au Revoir, Dr. Denny

*** We know there are other children with extremely severe and even life-threatening conditions, whose parents suffer immensely right along with their child(ren).  This post is not to discredit those children, their parents or their doctors who work really hard to achieve positive outcomes. ***

How many of us actually endeavor each day to make a difference, And not just to those who are closest to us?  Do we dare to reach out and share our knowledge, skills, and compassion with those who are mere strangers? 

Is it solely our choice or is it hard-wired into us so that we could not ignore it no matter our efforts? 

Do we set out to leave our mark or does our mark reveal a Great Plan that was in-motion long before we even took our first step?  

Eleven years ago, my husband and I began a journey of enormous proportion, one that we could never have dreamed of ... not even in our grandest imaginings.  We stepped onto the path of adoption.

During our first meeting at the adoption agency, we were surprisingly shown the information sheets of three little girls that fit our willingness to adopt a child between the ages of 2 and 5 with minor, correctable needs.  My “Google" search led me to believe that 'minor, correctable needs' were most often related to cleft lips.  I read that the condition was easily corrected with a simple surgery and in my naivety, I was certain that this was something we could handle.  We were prepared to accept a child with this special need.  

However, of the three children whose information was presented to us on that first visit at the agency, … the two who, in fact, had a cleft lip were being pursued by other families.  There was, at that moment, one little girl left, between the ages of 2 and 5 with a minor, correctable need.  At first glance, we pushed aside the sheet that contained a small black and white photo and a tidbit of information about her.  But God had different plans … and we changed our minds that day and chose to pursue the adoption of that little girl with a facial defect that we didn’t know or understand about. 

By the time we met her, we didn’t care at all about her facial difference or her scars, but someone who heard that we were adopting a child with a facial defect came to us to tell us that we should bring our daughter to Children’s Hospital of Wisconsin Center for Craniofacial Disorders and request ONLY Dr. Denny.  A few months after our little girl joined our family, she had her first appointment with him. 

He opened our eyes to the world of craniofacial anomalies such as Molly’s (hypertelorism with meningocele) and the surgical correction for such a case, the “facial bi-partition”.  It was difficult to grasp the physical change that would take place with Molly’s face once the surgery was complete.  I remember actually fearing the fact that she was going to look “different”, even though “different” meant more normal.  Even though it was explained to us what would take place during the surgery and even though we had researched the procedure on the internet, we really had no idea what it would actually be like until we experienced it. By the time she had her first surgery, she had been a part of our family for exactly one year.

After a long day of waiting while the surgery and recovery processes took place, we were told that we could wait in the hallway because the surgical team, along with Dr. Denny, would be bringing Molly through as they took her up to the ICU.  We would be able to see her for a moment before we would also be transferred up to the ICU waiting room while Molly was transitioned.
I remember Dr. Denny’s face … he was clearly really pleased with the way her face came together and I think he expected that we would be just as pleased.  However, seeing Molly for that first time, head completely shaved, incised and stapled ear to ear,  and her face swollen and sutured along her nose and between her eyes, ... well, ...  

I cordially agreed with Dr. Denny when he asked us, "Doesn't she look fantastic??" but after the team rounded the corner down the hall away from us, I remember crying so hard that I nearly threw up.  I was shocked!  I was afraid!  I was inexperienced and unknowing!

But, I learned so much from the experience.  Dr. Denny guided us through the entire healing process and how to care for our daughter.  We were amazed when she was able to return to school only two weeks after surgery.  Because of her, … because of him, … who we WERE "changed".  How we saw things changed.  There were others like her, born in a country, to a society that often looks down on a person so visually imperfect, a place where children born with physical defects are almost always abandoned.  Left to grow up in that society, these children become outcasts and street beggars, non-benefitted and uncared for by the government or the people.  So we found Brynn, a little girl born in the same province, in the same month, listed with the same congenital defect as Molly.

As it turned out, Brynn's condition was not as severe as Molly's and she did not need a facial bi-partition.  Though we were mentally prepared to go through it again, we were thankful that Brynn would not need such a severe surgery.  

With Brynn's surgery, we experienced and researched and learned even more.  

We now had two little girls who, left in the land of their birth, would likely be condemned to a life of poverty, neglect, and very little, if any, opportunity ... ALL BECAUSE THEY LOOKED DIFFERENT.

Several years went by and the call to adopt came once again.  No sooner had we begun our discriminatory search for Chinese boys with facial defects, we found Jonah and Rees, listed separately, both with severe facial differences, and noted as being best friends.  We knew that we were entering territory that would be MUCH MORE than we had gone through with the girls but one look at these boys and it was impossible to say "no".


Of course, we contacted Dr. Denny’s office right away.  We wanted to be sure he was still there because we knew retirement had to be looming in his future at some point.  Upon viewing the bits of information we sent to him, his response was a witty, yet confident, “I can fix them.”

Adopting these boys and meandering through their medical journey has been the most challenging thing we have done thus far.  Once we made the official decision to pursue adopting them, I began researching the various terms listed in their limited files of information.  Jonah was listed as having a “Tessier #7 bilateral facial cleft.”  I truly had no idea what that was.  I only knew about cleft lips and cleft palates.  But apparently, there is an anatomical classification of fifteen (15) types of clefts that can occur.  "It was first described by Dr. Paul Tessier in 1976, and classifies the location of facial, craniofacial, and laterofacial clefts, using the orbit (location of eyes) as the primary structure for reference." Detailed information on Tessier clefts on the Cleft Palate Foundation website.

I became fascinated with the information I was reading on Dr. Tessier’s work and the information regarding clefts and their surgical repairs.  So, I began to research more about him.  This was brand new territory for us and we expected that Jonah’s treatment was going to be extensive and intense.  We did not know a thing about clefts, especially of this sort.  But I began to fit together pieces from the previous nine years ever since Molly’s first surgery that I didn’t even know were being fitted into a bigger picture.

So, flashback to 100 years ago ...

"In 1917, a boy was born to a wine merchant in a coastal town within Nantes, France.  The boy wanted to be a shipwright or a forester, but chronic ill-health disqualified him from both.  I think God had other plans for this young man.  His name was Paul Tessier and in 1936 he entered medical school where his training included maxillofacial surgery with some exposure with operations on cleft lips.  In those days, conditions much more beyond cleft lips were deemed inoperable but Tessier envisioned MORE.  He had a propensity to widen the boundaries of maxillofacial surgery, which was met with indifference bordering hostility by many of his colleagues.  So, he left France to research and study from leading plastic surgeons in England and even America.

In 1957, Dr. Tessier was head of the Foch Hospital near Paris, France and he was aware of multiple patients in need of medical attention who were simply being ignored because it was believed that nothing could be done.  Because of his interest to expand the capabilities in treating persons with facial defects, “the Paris medical establishment blocked Tessier’s access to the dissecting rooms, so, with characteristic resilience, he travelled 250 miles to Nantes every evening, practiced on cadavers until the early hours, and then slept on the 2 ½ hour train ride back to Paris.  During his persistent, tiring, devotion to enhancing treatment possibilities for these patients, he developed a method of completely detaching the facial bones and repositioning them using grafts of the patient’s own bone.”   
“In 1964 he performed the first repair of unnaturally widely spaced orbits, working from behind and showing they could be freed from the skull. A turning point came in 1967, when he presented his series of craniofacial operations to conferences in Rome and Paris.
Soon, surgeons from around the world were coming to Paris to train under him …”

Dr. Tessier is considered to be the Father of Craniofacial Surgery.  Before him, it was never done.  Before him, no one dared to go beyond what was known, ... to push the boundaries of knowledge, … and we are simply amazed to discover that our daughter had a facial bi-partition only forty years after it was performed for the first time on a live patient. 

Interestingly, I recalled when we were first getting acquainted with Dr. Denny having read that he completed his fellowship in 1986 in Paris, France.  At the time, all I could think was, “why on earth would he go all the way to France to do his fellowship?” 

             "...and since then, virtually every craniofacial surgeon on the planet has either trained under Tessier or one of his pupils."  (borrowed and adapted from Paul Tessier’s obituary posted on:

It wasn't until ten years after we adopted Molly that this all made sense to us, that we realized the significance of all that we had learned and experienced up to this point.  It was Jonah's speech doctor who told us that Dr. Denny had been Mr. Tessier's Fellow and that he was one of the last practicing physicians who had worked with Dr. Tessier.  We asked Dr. Denny why he felt he should go to Paris for his fellowship.  He said he had wanted to learn from the source … the direct source … nothing else would do.  And THAT is one of the things that we have admired most about Dr. Denny … his unwavering determination to seek and to achieve the best outcome.  I even secretly felt I should ask Dr. Denny for his autograph ... I mean ... really, ... he trained with and worked alongside the Father of Craniofacial Surgery ... he's practically famous!!  

We have wondered what it was that made him want to become a doctor … what convinced him to become this type of doctor ... but all we have to do is look at our children ... and we know the answer.  

Truly, the most growth and experience, surely for us, but maybe even for Dr. Denny, has come from our boy Rees.  When we saw his photo for the first time, we immediately thought his medical situation was the same as Molly's; we thought he even looked a lot like Molly.  We were once again prepared for the facial bi-partition and all that went with it. However, it was discovered that Rees did not have the same condition as Molly and we found ourselves on a challenging medical roller-coaster of fear and uncertainty. 

"One thing after another" with Rees seemed to become the norm and whatever was the expected outcome each time something new was attempted would end up backfiring or being the opposite.  Our little guy has had a full range of actions and reactions to each procedure and we now have medical experience we never imagined we would have.  

Through all that we and Rees have endured, Dr. Denny has taught us, explained to us, cheered us on and encouraged us ... to be strong ... to be brave ... to be confident ... not to worry ... even though I admit that my first thought would most always be "worst-case-scenario."  He was always honest (told us he was stumped when he was stumped) and we understood him enough to know that he always gave us only as much as we needed for that moment and enough to get us to the next moment.

Perhaps our children don’t truly realize the significance or see their medical transformations the way we do.  Right now, they are young and view what’s happening to them more likely as a nuisance instead of a miracle, but … take Molly, for example …  We certainly didn’t adopt her and Dr. Denny didn’t perform her surgeries JUST so that we and he could be gratified by her positive response.  

But sometimes, it was difficult, because it seemed as though the impact of her adoption, her facial differences, her surgeries … were completely lost to her.  And in all honesty, that’s really okay.  

But then she saw what Dr. Denny did for Jonah and Rees.

Ten years after her facial bi-partition, she has seen the faces of these two little boys, whose features were severely abnormal, be incredibly transformed into something ... well, ... more normal.  And NOW, … she wants to be a doctor and she wants to attend the Medical College of Wisconsin and she wants to work at Children’s Hospital of Wisconsin.  It wasn’t missed.  What we saw him do in her, (which propelled us to seek out other children who needed similar specialized medical care in addition to a family), she saw him do in them.  And it has meant something ... something more than a corrective surgery, a paycheck, or plight for normalcy ... it is the indisputable truth of insecurity, fear, and rejection being exchanged for confidence, opportunity, and equability.  


When we look at Dr. Denny, we realize he’s just a man; we do not see a god … but rather a man who was greatly gifted by the All-Powerful God with an incredible propensity for the knowledge and skills that would give a voice to the voiceless and hope to the hopeless ... 

What can we say or do to adequately thank him?  Nothing.  Sometimes, you just can't do enough or say enough to truly let someone know their impact.

But we want him to know that he's a part of the miraculous redemption in our family ... to us, he IS family ... he's mentioned in our home as if he was an extension of our household.  Going forward, or certainly for quite some time, we will always compare the method and the manner, ... the attention and the ability, ... "what would Dr. Denny do??"  And maybe that isn't necessarily fair to whoever our new doctor will be ... but it says a whole lot about the doctor to whom we have to say "good-bye".  

ADD ... 

... thank-you for making a difference, ... for leaving your mark, ... for believing in the future of and effecting an imprint upon the lives of our children and so many others. Thank-you for teaching us in sharing some of your knowledge with us.    We are forever changed and we will never forget you.