"I will praise you, for I am fearfully and wonderfully made; marvelous are your works and my soul knows very well."  Psalm 139: 14

In the original Hebrew text, the word 'fearfully' means: with great reverence and heart-felt interest and respect. The word 'wonderfully' means: unique, set apart, uniquely marvelous. WOW! No wonder the psalmist bursts out with exuberant praise in this verse. He realized the great love and concern that went into his unique and very individual creation. According to this Scripture, you.. me... WE... truly are a Master Piece! The next time you have the temptation to ask the Lord, "Don't you care what is happening to me?" Remember this verse, because the truth is that He cares and loves you with an acute intensity that cannot ever be measured.

Adventures with Lucas...

As I said before, my name is Lucas Oliver Moreland (Luke for short) and here is my introduction: I came about as scheduled, full term, (via C-section) on July 10th, 2013.  My mom's doctor (delivering me) said, "My oh my, I have never seen this before!"  The umbilical cord was wrapped around my neck 5 times!  After they 'unwrapped' me, I was taken over to the side to get all washed up and weighed.  :)  I weighed 7lbs and 15 oz.!!  The nurse cleaned me up and showed me off... My mom and dad were so happy about adding a boy to our family, my sister was happy too!  I was whisked away to the nursery with my dad following right behind me so that I could be further checked out and showed off to the rest of my family waiting outside the nursery window.  In the nursery, the nurses and my doctor looked me over very closely... it was there that they discovered I had some "interesting characteristics" as Dr. Bijon would say. 

Bonus #1:
I was born with what the Doctors thought was a Port Wine Stain- that covers a large portion of my body.   At birth I had a dark redish-purple birthmark (what was believed to be a port wine stain) between my eyes, under my nose, and on my bottom lip.  It has since faded to a lighter red.  I also had a large portion of my forehead that would change colors to a darker red when I got upset, it has also faded to a much lighter red.  I do still change colors sometimes though.  When I was only a few hours old it was also discovered that my hands, legs, and feet were a dark purple- bluish color.  At first it was thought that this was because I had low blood sugar but later we learned that actually the discoloration was due to acrocyanosis (which is an over exaggeration to hot and cold) it's harmless.  I do still change colors on my legs and arms, sometimes they are purple, sometimes more of a blue.  *What we now know, after Genetic testing, that all of my "discolorations" are Capillary Malformations.  {See the Skin and Vascular tab for more info!}

Bonus #2:
The right side of my body is larger than my left side. My right ear is bigger than my left, my right cheek bigger than the left, my arm, hand, leg, foot and even right booty cheek are all slightly larger than the left side. I have what is known as Complex or Total Hemihypertrophy (hemi).  This means that it involves only one side of the body from the head down.  At this time we aren't sure how this will affect my future and growth, but we will learn more as I grow and develop!  {See the Hemi Description tab for more info}

Bonus #3:
I have webbed toes!  I also have two webbed fingers on my larger right hand.  Webbed toes (or fingers) is the common name for syndactyly affecting the feet (or hands). It is characterized by the fusion of two or more digits. This is normal in many birds, such as ducks;  amphibians, such as frogs; and mammals, such as kangaroos. In humans it is considered unusual, occurring in approximately one in 2,000 to 2,500 live births. There are various levels of webbing, from partial to complete. Most commonly the second and third toes are webbed or joined by skin and flexible tissue. This can reach either part way up or nearly all the way up the toe.

Shortly after I was born and there were discussions about my medical conditions, my sister became a bit concerned and began asking a lot of questions.  Most of the questions were "Why?"  Why does my brother have this or that?  My mom simply explained that each of us are unique... God made each of us special, each of us different.  To make it more understandable, these differences became known as bonuses. Lots of people have bonuses!  That's what makes us so special in God's eyes.  :)  The fun thing is that Alivia will see someone with something different about them and now respond, "It's just their bonus!

At the time, my bonuses are just cosmetic.  While in the hospital I had an MRI done to see if my brain was also asymmetrical and to see if I had any problems with my brain tissue or cognitive function, my brain is great!  It is unaffected.  I also had an ultrasound done on my kidneys and they were fine as well. 

We will continue to learn as I grow and change.  Thanks for taking the time to read my story and I hope you find this site full of information to help you understand more. 


Adventures in Medicine...

October 18th, 2013:  Today we began our Adventures in Medicine!   I met Dr. Dorothy K. Grange at St. Louis Children's Hospital.   She looked me over thoroughly, she measured me all over too with her little tape measure!  She even took pictures of me for research purposes!  My weight and height were also checked, I weigh 16 lbs. now and I am 2 feet tall.  :)   After a lengthy visit she said, with certainty, that she believes I have a very rare syndrome called Megalencephaly-capillary malformation syndrome (M-CM or MCAP). { See the new tab above: "M-CM or MCAP Description" to learn more about this syndrome.

 

Dr. Grange does want to do some further testing; to both confirm her diagnosis and to check out my insides.   Developmentally I am great and she measured the circumference of my head and it is average; however, since brain development can be an issue with this syndrome she said she'd like to do another MRI.  She would also like to do another ultrasound of my kidneys, an echo-cardiogram of my heart, an eye test, and of course the genetic test to see if I have the "gene PIK3CA mutation", which will confirm her diagnosis.  Since that will be a lot of testing, we are going to come back to Children's and get it all done in one day. 

Since we were in St. Louis...

We decided to check out the Science Center and the Zoo...!  We also met up with some of our family that live there in St. Louis, for dinner (and a little Cardinals baseball)!!  We just so happened to run into our cousin Keaton, from Nebraska, who was in St. Louis competing in a Chess Tournament at our hotel!! (What are the odds?!)   ....We had a wonderful weekend of family visits, exploring at the Science Center and checking out the animals at the Zoo; we even caught a Sea Lion show -with our cousin Sandy- who turned out to be a wonderful Zoo Guide!  :)

We had a wonderful time!!

Adventures with Luke, Continued....

December 4th, 2013:  Today I had a FULL day of testing at St. Louis Children's..  MRI, EKG, EEG, Ultrasounds, and Genetic Testing (Blood and Saliva).  The testing went well, other than the IV required for anesthesia for the MRI--  The nurse was unable to find a vein in my leg after several attempts, so she tried my arm, after a few minutes it finally worked... you can bet I put up a fight and threw a fit-- hey, can you blame me?! IT HURT!.  But it did make it very emotional for everyone involved!  ...We made it though.  All things considered it was a good day, we had a lot of people praying for me and my doctors and my family!




By the way....

Shhhhh....... Don't tell anyone, but.... my Papa is SANTA CLAUS!!!!!!!  

Merry Christmas, everyone!!!  

Happy New Year!  It's January 2014, I am now 6 months old and I've learned some new tricks.... I learned how to do push-ups and planks! 



January 7th, 2014:  Today mom got a phone call from my genetic counselor at St. Louis Children's Hospital. My blood and saliva test results came back and did confirm the pik3ca gene mutation-- so now we know fore sure, I do have M-CM. I don't have any complications at this time, all my MRI, EEG, EKG, and Ultrasound tests came back with great results, (I am normal on the inside!)  however, I will have to have abdominal ultrasounds every 3 months and MRIs every 6 months until I am 3 yrs old just to monitor my insides and my growth.  My family and I appreciate everyone's prayers on my behalf.  :)






February 2014,   I am 7 months old, and now I'm working on sitting up... I still need a little help with pillows, because I sometimes just fall over to the side, but I'm working on it-- learning more and more every day!   Also, I LOVE bananas!!  This eating thing is..... awesome! 

April 2014:   I am 9 months old and I can sit all by myself now!!


I have syndactly of my fingers on one of my hands, I also have what is known as trigger finger syndrome (where one of my fingers is stuck in a bent trigger position).  {*Interesting, my sister had trigger finger syndrome also and had surgery to correct it...}  After careful consideration and advice from my doctors, my mom and dad decided it was best to have the trigger finger fixed and also have what is known as syndactly release.  Which means they are going to separate my fingers.  This should make it easier for me to work on those fine motor skills like picking things up to put in my mouth!  The bad news:  I will have to wear a cast on my arm, all the way up to my shoulder, for 6 weeks!!  :(


{Note from Mom:  The surgery went perfect!  }

This is me, just before my surgery... I can sit!

Ok, so this whole cast thing COMPLETELY messes up my scooting/crawling that I have JUST NOW started trying to do!!!!  UGH!!!  I DON'T LIKE IT!!!!

May 2014:   Well, I guess it wasn't too bad.   And time did go by rather quickly I suppose.  :)  It has officially been 6 weeks since my surgery, today... I get my cast off!!!  Hooray!  


The doctor said my hand and fingers looked great!  I thought so too!   I am VERY happy to have that cast off! 


Just in time for Summer too......! 






<-----   A picture of my hand after the surgery. 










<------  A picture of my hand before the surgery.






 * And below...  Pictures of my hand, 7 months after my surgery:


June 11th 2014:     Today I got to meet with my Neurologist in St. Louis.  A  week ago I had my routine MRI and Ultrasound, today we find out some results... we've never met with a neurologist before, we will be seeing Dr. Larsen.  He also sees another kid with M-CM, so this will be neat!


Dr. Larsen checked me out all over, showed my mom the MRI images and discussed my development.  My right hemisphere and ventricle are larger than the left- but that's consistent with my right side hemi.  My cerebellum overgrowth is also consistent and stable- meaning no Chiari Malformation!!   The Dr. said we will continue to monitor my brain growth and development with MRI's every 6 months.  In Dr. Larsen's words: "Luke is doing great!!" (But of course, I knew that already!)  ;)


So, I am now 11 MONTHS OLD!!!  ....And I can now pull myself up and stand!  This growing and learning stuff is FUN! 


July 2014:   {A Note from Mom: }  

 

Tomorrow, my Luke is turning ONE!!

I REALLY want to thank you all for caring so much about our family throughout this past year, and remembering us in your prayers.

"Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand"  (Isaiah 41:10)

From the moment Luke entered our world and the realization that he was born with a few extra "bonuses", fear is something we've not had. We'...ve also not been dismayed. As one nurse explained "what if's" and I calmly nodded my head, she looked at me funny and asked me, "Are you understanding this, do you get what I am saying? You seem very calm?!" Of course I understood. God created Luke, gave us Luke, and God was with Luke. Now, we've had our share of worries, we've even erred on the cautious side of doubt a time or two... But prayer has quickly reminded us- not to worry. ...We can 'plan' all we like, but we have no actual control over the outcomes. We bear witness to the miracle, but we certainly don't dictate it. But God, He already knows. He already delights !  In the dark, secret hours He is singing-- spinning life out of strands of DNA-- an artist at work, creating and shaping another child in His image.

As you know, Luke has an extremely rare genetic syndrome, M-CM.   I'm talking 200 people diagnosed with this syndrome- worldwide- rare.   We are learning new research, new findings, new genetic information-- as the researchers are learning these things.   

Luke has taught me how to pray. I have learned that its normal to ask all the "why?" And "what's next?" Questions. -And that sometimes we're called to keep walking forward anyway-- without answers, only with the blind assurance that we are loved, that God has a plan.  :)  Again, Thank you for your love and your support in our walk...


HAPPY 1ST BIRTHDAY TOOO LUCAS..... HAPPY BIRTHDAY TO YOU!

It's my Birthday, It's my BIRTHDAY!  Hip, Hip, Hooray!!!  Lets have a POOL PARTY!!!   :D



July - August 2014:   I am enjoying my summer days home with mom and Livvy...


New skills I have mastered at 13 months old.... attempting to climb...and climbing! --- It didn't take long to figure this one out! 



September 2014:   At 14 months old.....drum roll please.... I have learned how to WALK!!!  YAY!     So, now that I am walking, mom has tried desperately to find me some shoes to wear... as you can see in most of my pictures, I have what they like to call "potato feet".  My feet are pudgy, and wide.  (And CUTE...might I add!!)  Mom read where you can take a pair of Crocks and warm them up with a blow-dryer and when the rubber is hot, you can stretch them to fit.   She and dad tried it, and it worked!  They had to stretch the right one out a little bit more, because my right foot is a bit bigger, but hey- they are a perfect fit and now I have shoes!!   Except, I find it MUCH MORE FUN to wear them on my hands instead......  :)



Also, now that I am walking, the doctors recommended that mom have my legs and hips checked out by an Orthopedic specialist to see if I have enough of a leg length discrepancy that it needs to be addressed.   


The Orthopedic doctor was a pretty great guy!   He took some x-rays and said there wasn't enough of a difference to even worry about anything for now... he said we would check me again when I turned 3 years old, unless mom happens to notice a sudden growth spurt or some other kind of change.   Sounds good to me!    ...Did I mention I drove us there also.   Yeah, besides walking all by myself now, I'm also driving.   I'm kind of a big deal around here....!  (haha!)

October 2014:  In October I got a little stomach virus... except I had trouble getting rid of it!   Actually we ALL ended up getting it, and getting sick.  :(  Mine held on a little longer than I hoped and I got dehydrated and my blood sugar dropped too low, so I had to go spend a few days in the hospital until I was all better.   I guess it wasn't so bad, I had some visitors, I got some new toys, and I did get to pretty much just hang out and watch movies. 

November and December 2014:   Life is good.   I am growing and changing and getting into everything and learning new things every day!!   I have had a wonderful Thanksgiving and another awesome Christmas!   Hope you all did as well!  :)

Happy New Year!

Adventures in 2015..... 

January 2015:

I just turned 18 months old!   It's been a great {new} year so far!   What I'm in to at the moment... (mom says "EVERYTHING!" haha!)   ...I am walking everywhere, I am (kinda) running, maybe it's more like trotting.. but I can be pretty quick!  I like to climb on top of stuff, I can push my toys over to the couch and climb up on them to get on the couch!  I love to eat!  Bananas are my favorite, but I pretty much like everything.  Let's see... I can say "Uh-oh, Mom-ma, dadadada!" and I can point my finger to dad's deer on the wall and say "pow-pow!"   I love to watch Mickey Mouse Clubhouse and Veggie Tales.   I LOVE the vacuum cleaner when mom vacuums!   I like to run around her in circles and laugh loudly!!  I love to wrestle...if I see my mom or dad, or even my sister in the floor I will tackle them!  I like songs, I like to sway back and forth- dancing.  I especially like the Itsy-bitsy- spider.  It's my favorite!  I can even do the finger gestures and make the spider go up the waterspout.  :)  Oh, and I like patty-cake!  Because mom always tickles me when we "throw it in the pan"!    And, last (even though there's probably more...) I LOVE animals!!!  I love our dogs, and I love our cat!  Mom sometimes lets the cat in the back door to get a bite to eat because she feels sorry that the dogs are always eating all the food...and I like to sit right by the cat and pet her, and pull her tail, and make her look at me, and even I try to pick her up and carry her around.  Except mom always stops me and says I'm choking her.   :) 


I went to Children's hospital for my check up-- I had my Ultrasound and MRI done.   My neurologist called back a few days later to give mom the results and all was great!  


{Note from Mom:}

Luke's neurologist called us back today with results from his MRI on Wednesday: Luke has not had any changes from his last MRI, which means his brain is still growing consistent (the right half larger than the left half) but is not crowding, there is no fluid buildup or blockage, there are no concerns. Luke has no brain abnormalities at this time!  We feel so very fortunate, since brain overgrowth and abnormalities are a primary characteristic and complication in M-CM. We praise God for wonderful news and for answering prayers! We thank you for your prayers!!


* We also have a few other things in the works.... When our upcoming projects are completed we will share with everyone! *

However, for a sneak-peek.....

First...

I wrote a book.  It is a children's book about DNA and genetic mutations.  I have titled my book "Wonderfully Made".  And I am currently in the works to get it published!   More about that later.....  

Second....

St. Louis Children's -Washington University- Genetic/Genomic research team developed the test that Luke underwent for Genetic testing.  Luke was the very first patients to use the test successfully.   Up until that point, it had been in the research/testing stages.   Now, they are trying to get the word out about the test availability so that others' may benefit from it.   Therefore, they have asked us to be a (well, I guess you'd say) spokes-family.  They sent a reporter to interview us while we were in St. Louis, as well as a photographer to take pictures of us and us with Dr. Grange (Luke's genetic doctor).   When the news article about our family and the genetic test is complete, it will be on their website, as well as the newspaper.  Their hopes are to email the news article to several local media stations, news papers, magazines, medical journals and publications.... in efforts to spread awareness of the test availability and show a family who has already benefited from having a confirmed diagnosis of a rare genetic syndrome.   So, in Alivia's words, "We could be famous!"  :) Lol!  

Here are some pictures from our session with the photographer:  Dr. Grange is pictured as well....

Adventures with Alivia.....

Hi this is Alivia!

This year I am in third grade and my teachers name is Mrs. Lemonds- she is very nice!!!!! For christmas I got a science set and me and my dad are growing our own crystles! ( is that cool or what!) And i got roller blades I LOVE to skate all around our house-- in the kichen, and the hall way, my bed room, and my brothers bed room.

I am 9 years old and my brother is 1 year old. I still kiss my brother all over his face! And he gets mad at me. I like that he is 1 now-- he's more fun to play with. 

I can't wait til he's bigger so we can do lots of cool stuff together! 

Love,

Your Freind Alivia

Adventures in 2016....

From Mom:   

We haven't updated in quite a while!   Life seems to have moved at a fast pace throughout all of 2016.   

We celebrated Luke's 3rd birthday,  Jason and I celebrated our 15th wedding anniversary, we celebrated Alivia's 11th birthday... and of course we celebrated all of the other holiday's and family birthdays in between.    Luke has been growing and developing quite well.  His speech therapy ended just before his 3rd birthday... and he is talking up a storm!   He loves zombies, pumpkins, skeletons (anything to do with Halloween!!!)  He loves anything to do with pirates!  He even had a pirate birthday party.  He loves cake!  He loves gummy worms.  He still loves cheeseburgers and he still loves dirt and frogs and anything outside.  We went on several nature hikes this summer and spent as much time outside as we could.  He also loved swimming this past summer.   Christmas was the BEST Luke loved opening "pres-a-lents" as he called it!   And of course... Papa is still Santa Claus.   ;)


All of Luke's appointments have been well!    It was a great year, we are looking forward to the adventures to come in 2017!

Exciting {News} from 2016....  Alivia says,  "We're Famous now!"  haha. 

Luke was featured on (St. Louis Children's) Washington University medical website and in a few journal articles.   

Here are some links:


https://medicine.wustl.edu/news/cancer-genetic-test-offshoot-helps-diagnose-rare-syndrome-in-children// 


http://onlinelibrary.wiley.com/doi/10.1111/cge.12819/full 


I wrote a book.   It was a personal project for Luke, however, the success from the book has been astounding to me!   I have officially sold 100 copies!  I never expected this and I am grateful!    :)

Here is a link to the book, Wonderfully Made, by Stephanie Moreland


https://www.amazon.com/Wonderfully-Made-Stephanie-Moreland/dp/1514726114