Saturday, January 25, 2014

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           

Monday, January 6, 2014

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, 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 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: