God's abundant love

Today is my first day off for the Christmas break, and boy am I enjoying drinking my coffee without the morning hustle and bustle, and just being able to be still.  I can't help but become a little nostalgic because today also marks one year that I watched doctors and nurses wheel Logan back to the operating room once again, for his eleventh surgery, (fifth cranial-vault reconstruction) where were then directed to the oh-so-familiar family waiting room at Medical City Dallas Children's Hospital.  Both sides of our families were there supporting us like they always do, and words cannot even express how much that means to us.  Our wonderful pastor and his wife, Donnie and Karen Foster came to be with us as well, and to pray for Logan and our family during this stressful time.  I remember how scared I felt, but also thinking to myself, "Lisa, we've gone through this so many times before, you know what to expect and you know the outcome."  One would think that this gets easier once you've been through it so many times, and when your child gets older it shouldn't be as difficult, right?   But to be honest, it doesn't.  It does not get easier while Steve and I wait in the surgery holding area to see the medical staff walk up and say, "Ok Mom and Dad, time for hugs and kisses and goodbyes, they're ready for him" where I have to fight tears from streaming down my face so he doesn't see how worried, scared and sad I feel that he has to go through so much pain, again, but rather put a big smile on my face and say, "I love you and we will see you in a little while, sweet dreams" while I watch them roll my son away, knowing what is about to happen.  He needs to see my face smiling before they wheel him back to an operating room with doctors and nurses all dressed in green or blue scrubs and masks on their faces and tools and machines everywhere.
On some level, it does help to know what to expect now when he has to have surgeries and what to bring to the hospital, but it can also be a disadvantage to know....to know that he will probably be sick from the anesthesia, cry out in pain most of the nights, beg the nurses to please don't wash his incision of about 100 stitches that runs from one ear across his head to his other ear, have so much swelling that his eyes are swollen shut and which also have a stitch in each eyelid to protect them until the swelling goes down, to go days without sleep, and pray that he doesn't get an infection from the spinal fluid drains.

However, what is easier, is knowing that God's abundant love never fails.  It is always there, and reminds me that "there may be pain in the night, but joy comes in the morning."  It is easier having my savior, Jesus, who hears our prayers, and sometimes down right pleas, for protection and healing. I look back over the past year, and realize how much God has done for my family, in many aspects, and how far we have come.  Logan is a true testament of just how real God's love and faith is.
Our God is a loving and forgiving God.  He gives us the strength and hope to make it though our darkest hours or moments, if we trust in Him.
God Bless!

"I can do all things through Christ, who gives me strength."  ~ Philippians 4:13  

before swelling set in

four days after surgery, playing the wii through slightly opened eyes

going home!  Christmas eve 2013

That was then, this is now

Spreading the Word

About a week ago, I had the honor and privilege to address the high school student body at Ft. Worth Country Day School to help spread the word of awareness and acceptance of those with a craniofacial difference.  The students had been required to read the book Wonder, and some of them had researched CCA's website and wanted someone from the Children's Craniofacial Association to come and speak about their organization.  They host an annual dodgeball fundraiser and wanted to donate funds raised to CCA.   Representatives of CCA could not make it in the timeframe they needed, so I was presented with this opportunity.  It didn't take a second thought for me agree to take on this challenge, and put my heart and soul into this speech and to give them a parent's perspective.  I compiled a slide show that included a little history of Logan's diagnosis and several pictures of him over the years, showing how he is just an ordinary kid, loving the same things that other kids do.  Within my presentation, I spoke some truths about what it is like for a cranio-kid:  surgeries, hospitals, needles, and pain.  Although the pictures I showed were of all the happy times of him being an ordinary kid, I pointed out that what they didn't see past all the smiles was the anxiety he has experienced over the years of going to public places, the worry of how many people will point and stare at him this time, or which kid is going to call him a name on the playground at McDonalds.  (true personal experiences - for another blog)
The students were very respectful and attentive, and I couldn't feel more blessed for this divine experience that fell into my lap (not by accident I may add).  I believe God puts people, situations, and experiences in our lives to teach and strengthen us so that we are able to follow His plan.  I hope God is not finished with me, and I pray that I go where He leads me.

Until next blog,
God bless,
Lisa

Choose Kind Campaign Coin Drive for CCA was a Success! Let's keep the momentum of "choose kind" going!

WSISD Students Raise More Than $2,800 for Children's Craniofacial Association

As part of White Settlement ISD's Choose Kind anti-bullying campaign, students raised more than $2,800 for the Children's Craniofacial Association during a district-wide coin drive in October.  Brewer Middle School seventh grader Logan Brown, who has a craniofacial diagnosis called Apert Syndome, inspiredWSISD's year-long Choose Kind  anti-bullying campaign that encourages students, staff and the community to treat others with respect and kindness. The Choose Kind initiative stems from the book "Wonder" about a fifth grader who suffers from a severely deformed face and does his best to be just an ordinary kid with an extraordinary face. Wonder is being used in districts throughout the nation as a way to encourage young readers to share their stories and to introduce the Choose Kind theme. Pictured are: Sherri Kottwitz, Brewer Middle School principal; Logan Brown; his mom, Lisa; his brother, Landon; Frank Molinar, WSISD superintendent; and Michael Dickinson, Liberty Elementary principal. The WSISD schools competed to raise the most money, and Liberty Elementary won, raising more than $800.

Moment of Truth - Part 2

It has begun.......

I have been chomping at the bit, waiting patiently to share with you some phenomenal things that are happening in our lives right now.  Where do I even begin?
I will start by saying, that since last spring, I have had a heavy heart knowing that Logan was finishing up his last year at the school that I teach.  The school where everybody knows his name, his personality, his learning style, etc.  So I guess I began having somewhat of an "empty nest" feeling, if you will, that he would be leaving and entering into middle school, where perhaps only about 25% of the students would know him.  And truthfully, I was actually happy that he would finally get to attend a different school, as I wanted to be able to let the kite string go.  However, being that he is not the "typical" kid who is "just going off to middle school and growing up," but rather a uniquely, God-designed young man who was born with Apert Syndrome, burdened me.  Knowing how shy and introverted he is, I feared the worst would happen:  kids would stare, point, snicker, whisper, or even make fun of him because he looks different; and I feared he would be isolated, or isolate himself in order to cope with whatever he would be dealing with.  This sounds very pessimistic of me, but as a mom, I have to face the reality of it in order to advocate and be proactive for my son.  First impressions and initial experiences, especially in school, can make or break the mood for the entire year.  This sparked a fire in me.  Since I had previously read the book Wonder to Logan's class at the end of the school year, I had an idea.  I took my ideas to the communications director who is also head of the anti-bullying projects for my school district and she was very interested.  The gist of my ideas, was basically to try to mesh a choose kind pledge (a pledge encouraged from the book Wonder) with our anti-bullying month.  Since August, we have been working along with the district counselors and curriculum directors, and to say the least, this project has become bigger and better than I ever imagined!  Everyone is so supportive, and are really taking this and running with it!  I cannot wait until the "Operation Choose Kind" campaign kick-off in October!  This will now be a district wide campaign to spread awareness for kids with craniofacial differences AS WELL as taking a stand against bullying.  We will also be raising awareness in the community by doing a coin challenge fundraiser for the Children's Craniofacial Association (CCA), promoting and encouraging all to read the book Wonder, district posters will be hanging on the walls of schools, and to top it off, the 7th grade Character Education class at the middle school will be doing a book study on Wonder.
What a WONDERful way to start the school year!!   Please take a few minutes to watch the district video that is attached that we will be showing to the students, staff and community......Logan AND Landon are featured!  After you watch, please share with anyone and everyone, because this is how we spread awareness!!!!  After awareness, follows acceptance, and this is the ultimate goal.....for everyone, isn't it?

2014 WSISD Choose Kind Campaign

        

Click here for the WSISD Choose Kind Video.

Moment of Truth.....Part 1

 I have to say, first:  I am blessed to be a mom of two amazing boys:  one who was born with a craniofacial difference (Apert Syndrome), and one who has a servant's heart of gold.  Second, I'm lucky to be a teacher in the same school district as both of my boys.  I have a strong conviction to spread awareness and acceptance of someone who was born "different" by doing a book study with my students this year on the book Wonder, by R.J. Palacio.  I was very fortunate to have the chance to introduce this book to Logan's class last year in sixth grade, and the students seemed to enjoy it and grasp the theme of this story.  And the wonderful thing about the message is that it can apply to everyone and I really hope that it carries over with his peers, especially now that he is going into middle school this year.  But now, God has really laid this on my heart to help spread awareness; and through this book (and my blog) is where it begins.   
So, my moment of truth for this school year, as a teacher is: This is my chance, and I hope and pray that through reading this book, I will not only teach some good reading and comprehension skills, but somehow instill a deeper understanding of what it truly means to "Choose Kind."  I have made a bulletin board outside of my classroom, and I hope that it intrigues others to want to learn more, and read this book when they see what we post onto out bulletin, or when they see the book in the library, or hear others talking about it.  If you are reading this blog but are not familiar with the book, and you have children, grandchildren, nieces and nephews that are in the 3rd or 4th grade, I encourage you to read it to them, let them read it to you,  or read it with them.  If your children are fifth grade and up, have them read it and tell you about it.   There is a wonderful message in this book that teaches us about acceptance, bullying, and making choices that can be life-changing....to many.

          

We will be "Wonder"ing all year long!  I hope you do too...
Stay tuned for part 2.
Until next blog,
God Bless

Reflections

      Before I settled back into the daily routine of life, I took some time to reflect on the past five days of an amazing experience: my family’s first CCA Retreat in St. Louis, MO.   I have seen all the Facebook posts and pictures over the past few years of previous retreats, and have really wanted to go, but for many reasons I have been dragging my feet on planning this trip for my family.  Some reasons were the timing of surgeries, Steve’s work schedule and being able to take off the time that the retreat was scheduled, but also it was my fear of the unknown.   Apprehension seemed to have kept me from choosing to register, mostly because I didn’t feel I was ready.  I knew that attending a retreat like this might force me to face and relive some emotions all over again and was worried that it might not be what I expected, or wanted from this trip.  Who wants to go on vacation with the possibility that it might turn out to be depressing and emotionally draining?  Luckily, this retreat was quite the contrary!  And now that we have finally gotten the opportunity, and made the choice to be a part of this journey, I feel that my life has been forever changed.  So what do I take away from this experience?  I take away the sense of acceptance, being part of another family, a much bigger family with delightful people who have “walked the walk”, if you will, and have felt the pain of witnessing their child’s surgeries and struggles.  Even though we didn’t necessarily discuss all of our surgeries and experiences with each other – family-to-family, I felt there was an unspoken comprehension of what we’ve all been through.  I thought to myself, “these parents get it…. they have been on the front line, and know what it’s like to hear the constant beeping of the hospital monitors, the needles and I.V.’s (oh those dreaded needles!), the pain management, the turning of devices, the tube feedings, the anxiety, sleeping on those awful hospital chairs (or not sleeping at all), the swelling after surgeries, (I know I’m leaving out a lot of medical events here), signing and attending hundreds of I.E.P.’s, and advocating for your child on so many levels.” This gives me comfort knowing that you truly understand.    Although our social media provides great tools for connecting with others, there’s something to be said about face-to-face interaction, and perhaps this is what makes it so surreal.  As a parent, it was therapeutic to finally connect with people in person who understand where you’re coming from, regardless of which craniofacial syndrome or diagnosis your child has, and getting the chance to discuss not only the difficulties our children have faced or will be facing, as well as the ones we as parents face, but also celebrate the obstacles and challenges they have overcome.  I take away satisfaction in seeing our kids take ownership with confidence in who they are and where they fit into this world, especially as other children who are “like” them, as well as their siblings, surround each other with kindness.  I’m certain that I am not the first parent to point out how empowering the retreats seem to be for our kiddos AND their siblings….to know that they are not alone.   When I asked my kids and husband how they felt about the retreat, this was their response:  Logan (12 with Apert Syndrome) “I actually just felt like a normal guy around here.”  Landon (9) “I had so much fun and I made so many new friends!”  Steve – “I had a great time getting to meet so many new families.  Being able to ask questions and also help by answering questions for others who had younger children was very rewarding.”  I truly feel that this was a pivotal moment in our lives.  Going on vacation is always the highlight of the year, but to take a vacation surrounded by people whom I know I don’t have to worry about the stares, or whispers, or what they are thinking, and just being able to really leave it all behind, is the ultimate.  To sum it all up, I take away a new sense of belonging; and as a first time retreat parent, now I get it.  We do belong! We do have something in common with other families!  We do not have to feel like that family who has problems, with that child who has so many difficulties.  We are accepted!  WE are not alone!  Regardless of the miles in between us, we have made some lifelong friends and I cannot wait until the next retreat when we meet again!  Thank you Char, Annie and Jill for your dedication to serving all of the CCA families, and the many ways that you make a difference in so many lives!  

Cher Retreat - St. Louis, MO bound in 8 days!! 
I cannot wait to attend this year's CCA Retreat for the first time!  The top of the agenda list includes meeting some families whom we share similar experiences, emotions, feelings, and fears, and finally be able to exchange stories and connect with people who "live in our medical world" of surgeries, therapies, and more surgeries. 
What I hope to take away from the retreat:

For Logan - To be able to finally see, in person, that there are other kids just like him, who have had to endure and overcome lots of pain and difficulties adapting in many everyday life skills. (Triumphantly, I might add)  I also hope that he connects with other children, even as shy as he is, and exchange phone numbers or emails to stay in touch and have someone to connect with and talk about things that other kids might not understand.   I want him to realize, that he is not alone.  He is not the only one.

For Landon - To be able to finally see, in person, that there are other kids who have siblings with the same or similar challenges.  I hope that he too, connects with other siblings of craniofacial kiddos, because these siblings, oh these sweet kids, have witnessed more physical and emotional suffering on their brother/sister, and quite frankly, the whole family, than any kid should have to.  Yes, they are the strong ones, they are the servants at heart, but they too need a sense of connection and belonging.  For my Landon, underneath it all, I sense and feel his sensitivity when it comes to his brother.  I hope that he is able to see the good in it all, and make new friends, and converse freely about his and their experiences.

For Steve - Where do I even begin?  There are so many things that I hope Steve can take away from this trip, but if I have to narrow it down, it would be to finally let go....let go of any harboring emotions that he might have kept inside over the years.  (being a quiet man, he tends to hide his emotions sometimes, but a lot of men do, don't they?)  I also hope that he gets to meet some dads who have also had to jump all these hurdles and be the rock, the provider, the leader and just keep going.  Feeling a sense of peace would be the ultimate!

For Myself - Most importantly, if the preceding three happen, then I will be one happy momma! But, with that being said, I anticipate hearing other families stories and their journeys that they live to tell.  Innately, I love to learn about people and their lives, but oh, to actually get to hear stories that I can relate to on many levels, is the icing on the cake.  I look forward to meeting parents and their children, especially all the people I have already connected with via Facebook.  My journey of connecting has already begun with our fabulous social media, but having the face-to-face will be a wonder of its own. 

Until next blog,
God bless,
Lisa Brown

Spring Break......At Last!!!!

Spring break at last!!  Time for a little rest & relaxation, some outdoor fun, and throw in a bit of reflection too and you've got yourself some spiritual healing!......I am finally posting pictures of Logan's first year, and oh, the changes he's been through!!!  To view the slide show, just go to the "View my complete profile" link to the right, then find the word "posts" either above or below the picture of Logan and Landon in the go cart and there will be a post titled "My First Year".  It's amazing to look back and reflect on how wonderful, amazing, challenging, "hit the ground running," times were in his first year.
There was no time for thinking, resting or relaxing.....mostly physical healing.  But looking back through the years, adds more peace to my mind of what he has conquered, developmentally and emotionally.  In addition to Logan's conquers, comes mine as well.  As parents, we constantly put our own needs and feelings on the back burner the moment we have children.  But those of us who have children born with craniofacial differences that have multiple surgeries (and by multiple, I mean several surgeries that might even happen in the same year) may be stricken with suppressing all that is egocentric, and forgetting to take care of ourselves. 
Faith and praying is very healing and can lift up our spirits, or better yet take away our burdens.  But taking time to take care of ourselves can be the best gift that we give ourselves.  But we must give ourselves this gift - guiltless.  Realizing that God wants us to enjoy the life He has given us, and it's OK to do something for ourselves.  I have done just that already on this spring break, and as we are now on the down slope of our break, I appreciate what I have been able to do:  I have spent time with a friend, laughed, sat drinking coffee and being still, and shopped!  These were all selfish things, but all very guiltless.  I feel like a refreshed mom and wife now, and time for some more fun!  Family fun!  I am also happy to say that my husband is able to do the same - get away and do something for himself.  No work.  No worries.  No guilt.
As for the "something" for our whole family, we will be looking forward to the CCA Retreat this June, and hope to finally meet and connect with other families and share stories.
Take care of yourselves, and the rest comes naturally!

Until next blog,
God Bless,

Lisa Brown

Finally an updated family photo!  This picture was taken at our church, January 19th, 2014, just four weeks post-op from Logan's 5th cranial vault!  He has bounced back so quickly this time, and I look at him and think how much he has conquered and overcome in these last 12 years!  I have always been in awe of how well he has tackled life's obstacles, hurdles, and some issues have seemed to be that of a pole vault event.  But we conquer, and move on to all of life's adventures.  But somehow, this last surgery has brought about some lingering emotions for me as a mom.  I have been flooded with nostalgia of all the previous surgeries, developmental discoveries and milestones, the memories, and am left with a slight feeling of sadness, despite the fact that all of these events, good and bad, have blessed our family in so many ways, and I truly don't think I could count them all.  Which leaves me with some questions:  Why do I feel sad when he has survived more unimaginable surgeries that most kids, and adults, will ever go through in a lifetime?  Or, am I simply feeling this way because I am faced with the fact that he is starting to grow up?  I have come to the conclusion that I am simply realizing that this little hero has become a preteen, is growing up, and that our focus for what we want him to accomplish is now beginning to shift.  I am taken, once again, down memory lane and begin remembering when he was able to roll over in his crib, crawl, walk, pick up things with his hands, talk (finally at age 3), color with crayons, sing songs, going to school for the first time, learn his ABC's & 123's, cut with scissors, play with play dough, playing the PlayStation, riding a bike, etc.  We have rejoiced and celebrated for each one, and have now moved on to more sophisticated skills like adapting and learning to use a "regular" pencil, using advanced technology,...and he is now learning to drive a go cart!  I think I am realizing that the developmental milestone days are accomplished and can be checked off of that list.  So now what?  Now, I find myself beginning to think about things like:  Will he be okay in middle school?  Will he break free from his painful shyness to "receive" good friendships?  Will he sit alone at lunch?  Will he "get invited" to events?  Middle school age is the beginning of self discovery - phase 1 (of many, I might add).  And then there's high school.......Will he be able to drive?  What kind of job will he be able to get?  Will he be independent?  That, is the ultimate goal that we hope for, for him.  Of course, we have high expectations for him and hope that the answer to all of these questions is yes, but what will the hurdles be in the coming years?   Life with a child with special needs is like a roller coaster, and you have grieving periods each time your child faces yet, another challenge.  So, my "glass half full" perspective on this roller coaster ride is that it has been scary, fun, breathtaking, with a "butterflies in my stomach feeling," leaving me with a sense that I have accomplished something, or conquered a fear.  Accomplishments:  seeing him learn and grow, and being a part of that teaching.  Fear:  Seeing him suffer through horrendous surgeries and pain, with the feeling of "there's nothing I can do about this," except be there to hold his hand and let the doctors and nurses work their magic.  If I had previously known everything this boy was going to endure on this first roller coaster, I probably would have had a nervous breakdown.  But now, it is time to get off the current roller coaster, only to get onto another one, one that is new, that I've never ridden before, and certainly don't know what to expect or how long the ride will be.  Do I really want to know what the hurdles are going to be?  Probably not.  So, of all the unknown, there is one thing that I am very certain of, and that is that God will be with us, the entire ride.  He is the seat belt, the safety bar that keeps us from harm, and lets us know that He will always be in control, and to not be afraid.  God gave us his only son, Jesus, so that we could live and fulfill His purpose.  Without Jesus, fear will consume you.  This has become the answer to my questions:  God knows what He has planned for Logan, and for our family.  Therefore, Jesus is my answer, my savior, my blessing, and I choose to turn to Him when I am on this roller coaster ride.  Prayer is my approach as I step onto this next ride, strapping in and holding on for dear life:  prayer for strength, knowledge, courage and faith for all of my family members as we enjoy this ride together leading us down the path that He has chosen for us.  

Until next blog,
God Bless,

Lisa Brown
lbrownfaa@gmail.com           

Hello from Texas.....we are the Brown family.  My name is Lisa and my husband is Steve, and our two boys from left to right are Landon (8), and Logan (11, will be 12 on Jan. 18th).  Logan was born with Apert Syndrome on January 18, 2002 at Harris Methodist Hospital in Fort Worth, Texas.  He also has a diagnosis of ADHD.  We are VERY fortunate to be close to the Craniaofacial team here in Dallas, as it is only about a 2 hour drive for us.  We live in Weatherford, TX which is just outside the metroplex of Fort Worth, and enjoy living in the "country."  I have been a special education teacher for 12 years, and my husband was a former teacher/coach, but now works for the railroad at BNSF as a dispatcher. 

Logan has had a total of 11 surgeries - 5 of them were cranial vaults, two syndactyly releases, LeFort III (mid-face advancement - attach and removal), arterial tear coil clamp, and a palletal fistula repair. 
Our next adventure will most likely be orthodontia.  Oral appliances, braces, etc...here we come!!  This picture of him with our dog Snoopy, was taken only two weeks after his most recent cranial vault in December 2013.  It is amazing how resilient he is!!  

Brothers Forever!

Logan and Landon's relationship is pretty much just like all other kids who have siblings.......50% of the time they are playing together and are best buds............the other 50% of the time, they get on each others' nerves and argue like crazy!!   

This is our Story

I was induced on Friday, January 18th 2002, due to the fact that Logan was three days past due, and I was ready to have this baby, our first born!  Unbeknownst to us, this was the first sign that we had a "strong spirited" little boy who was about to enter our world and teach us things we could never imagine.  

By 3 p.m.  I had already received my epidural, thus ready to begin pushing.  I had a very difficult time with this process, as I imagine a lot of women do in some circumstances.  However, I was pushing, but nothing was happening.  I would push, and he would try to come out, but then his head would recess back. ( I realize that this is probably more detailed information than some would care to hear about, but hopefully my insight in this matter might help other parents relate.)  I couldn't quite understand why this was happening.....I was doing what I was told, and I was giving it my ALL!  Hindsight, it was probably due to the fact that he did not have a soft spot and his cranial sutures were fused, thus not allowing his head to form the way it needed to for delivery.  It was then that I began to worry that I might have to have a C-section, not that that is the worst thing in the world to happen, but I was determined to deliver this baby.  Finally, at 6:05 p.m., Logan came into this world crying and shouting to the world that he had arrived, no C-section needed, and that's when our world came to a screeching halt.  Steve had said that he wanted to cut the umbilical cord, but it was then that the doctor said, "I'm going to go ahead and cut the cord down here, and we need to take a look at some things."  Of course I immediately asked if he was OK, and the doctor's response was, "he has some syndrome like features, and we need to take him to the NICU and start some tests."  I, being the special education teacher, immediately asked if he had Downs Syndrome, because in my experience with special needs kids, that was the most 'common syndrome', if you will, that came to my mind.  The doctor stated that it was not necessarily Downs Syndrome, and he was unsure at this time, but described that his fingers and toes were fused.  At this very moment, I suddenly felt as if the room was closing in on me, and overwhelming sense of vulnerability...was this a nightmare?.....was this really happening? 
I was scared, confused, and truly beside myself trying to process what just happened.  They asked my husband to walk over to see him when they were checking his vitals, apgar scores, etc., and I had to look over to the side mirror to see, but that’s when I saw my husband begin to sob.  My heart (if it were physically possible) broke into a thousand pieces.  I felt that I had failed him.  The nurses then brought him over to me all swaddled like a burrito, and asked me if I had a name for him, (which we had already picked out) and I told them yes, his name was Logan.  They let me kiss his forehead, and off they went to take my first - born baby, whom I just found out had “some kind of a syndrome,” to the NICU.   My husband was by my side by this time, giving me reassurances, affirming his love for me, for Logan, and that everything was going to be OK, but all I could think about was that I had failed despite the fact that I ate healthy and did all the right things.   And even though I knew deep down, that I didn’t cause this, I still knew that something, somewhere along the way went terribly wrong.  Guilt, as I’ve learned, can be a natural response for parents when something happens to their child, and a huge sense of responsibility comes pouring over them.  This was definitely my knee jerk reaction.  But I have learned otherwise, thanks to my faith in God and the support of my family and friends, that this was/is the biggest blessing in my life that I could have ever received, and to know in my heart this was not a result of me lacking in child bearing skills.  It even sounds so silly now as I'm typing that I felt that way.  But the truth of the matter is that I was 31 years old, a first time mom....so what did I know?

Now, being that it was in the evening, on a Friday, the geneticist wasn’t at the hospital and wouldn’t be until Monday.  That meant we had to wait two long grueling days to find out for sure what “syndrome” our baby had, and all the details involved.  In the meantime, the attending NICU physician came into our room with a book and two names of syndromes that she suspected it was.  The first was Crouzon’s and the second was Apert.  I distinctly remember her saying that she was thinking that he had Apert Syndrome, but had to wait for the geneticist  to examine him and make an official diagnosis.  She explained that research had shown that most children diagnosed with either of these syndromes would require surgeries, but could possibly have an average intelligence with maybe some learning difficulties, but there was also a possibility of some mental retardation.  Surprisingly, the special education teacher wheels began to churn, and I asked for clarification, “there’s a chance for average intelligence?”  The physician said yes, but reiterated that there was also the chance of some mental retardation.  I realize that this was her disclaimer, but all I needed to hear was “yes.”  That one little word was like a rainbow at the end of a terrible storm.  Nonetheless, I still felt a little bit in shock, but hearing the word “yes” gave me the first sense of hope that things were going to be OK.  Another sweet sign for me, as well as Steve’s, is that we would go down to the NICU to feed him, hold him, rock him….and even though his fingers were fused so tightly, which looked like he was just wearing skin mittens, we were
able to slide our finger up into his tiny little palm, and we could feel him squeeze!  I will never forget that feeling.  I was holding him one of the times, feeling that precious sensation of him begin to squeeze my finger, and a sense of peace brushed over me, and I remember looking at him and telling him, “you’re going to be OK, you are going to learn to do a lot of great things.  You are our angel baby."

Logan was then diagnosed on Monday, January 21st by the geneticist with Apert Syndrome.  We had a family counseling session and it was explained to us that this was a "fluke mutation" that happens right after conception, and had nothing to do with what we did or did not do.  She explained that there might be multiple surgeries to correct his skull and fingers and toes, but nothing could prepare us for what was about to come.  
We were then referred to the Craniofacial Team at Medical City Dallas, where we saw Dr. Salyer who did Logan's first three cranial vaults before he was even a year old, and retired soon after that.  His first cranial vault was when he was 12 days old - we didn't even know if he was going to live.  We also met Dr. Fearon, who performed his syndactyly releases (separation of his fingers and toes; done in two separate surgeries because they take skin graphs), a cranial vault in first grade, his mid-face advancement (Le fort III) in 2011, and his most recent cranial vault in December 2013.  Dr. Fearon is amazing, and we couldn't ask for a better surgeon as well as his staff and team members!  

Of course this is only a small portion of our journey, but I hope that I have included pertinent information in this introduction.  There are so many other topics I will try to blog about, especially our experiences, therapies, education, surgeries, etc.  But for now, this is what I've chosen to share.  

I will attach some photos from when Logan was a baby in future, some before and after his surgeries, as well as some that are up-to-date.  Because he was born in 2002, (before I was ever savvy enough about putting pictures onto my computer) I have to scan some of them, at least the ones from his first year.  After that, I got it covered.  

Until next blog,
God Bless!
Lisa Brown

If you have a child with Apert Syndrome or ever just have any questions, or just want to chat about your own journey, please feel free to email me at:
lbrownfaa@gmail.com