Monday, June 19, 2017

Shoes for Splayed Toes!!

ALTRA SHOES






Apert Friends!

We finally found some tennis shoes that are designed for splayed toes.  I stumbled upon these because we went to a sports store to specifically seek out some shoes recommended by Logan's surgeon, called Hoka Shoes.

We arrived at the store, but unfortunately they did not carry the size that my son needed.  I explained the situation to the salesman (who, by the way looked very athletic and understood what I was describing:  over-pronation, splayed toes).  So he said to me, we have this other shoe that is specifically designed for splayed toes, and he showed us this shoe.  I about fell over.  I have never, in 15 years of searching for the right shoe for Apert feet (at least good for comfort, standing and walking) found a shoe that fits the criteria.   Until now.

I thought I would share this shoe with you, because as your child grows into a teen, it seems to be harder to find a great shoe to fit them without pain and discomfort.  Especially when they go into high school and walk long distances from class to class.  We had to spend about $124 on them, but that is less than what we have spent in the past for a shoe + memory foam insert.  They carry these in men and women's.

Hoka shoes may still be in our future, but right now, Altra Shoe is the route for this Apert kid.

Today was his first day at an all day band camp, and his words to me regarding his shoes:
"I could barely even feel that I had shoes on.  My feet finally didn't hurt."  He has been complaining about his feet hurting for over a year!  (No bone spurs, etc.)

Just passing on a resource.  I do not work for this company nor get any kickbacks, :)

God Bless,
Lisa

Wednesday, May 31, 2017

Just a Couple of Cool Tools to Help with Fine Motor Limitations...

Hello all,

I wanted to share a quick demonstration with you on a few handy tools that Logan uses for adaptations with some fine motor/self-help skills.


  1.   This is called a T-Rocker knife.  In 2016, I started searching for a "special" knife, something that he could use and feel more independent with, when he needs to cut food.  He can use a regular steak and butter knife, but it is very tedious and frustrating.  I came across this little gadget on Amazon, and decided to order it and have him give it a try.  It is fantastic!!!  It makes cutting food so much easier for him!  He no longer relies on us to cut up his food now, and he uses it to cut meat, waffles, pancakes, etc.!  The only time he still needs help, is if the meat is really tough, like steak for instance.  I paid about $25 for this, and it is well worth it.


Logan allowed me to video him cutting his chicken tenders from dinner tonight.  As you can see, it has a wooden handle which makes it easier for him to hold and to get a grip.  The curve shape of the blade assists with cutting in a rocking motion.  All of the pressure for cutting works when all he has to do is push down while holding the wooden handle and rocks it back and forth.  Pretty easy.

video


2.  This handy gadget is for buttoning.  We've had it for quite some time, given to us by an occupational therapist.  He does button his own pants and shirts now, however, recently he had a band banquet to go to, and the buttons on his white dress shirt were so tiny that he struggled to get them buttoned.  I had asked him if he wanted me to help, and he said no, then came out of his room with this tool.  I had totally forgotten that we had it, but he remembered.   I have to say, I was very proud that he was solving his own dilemma, and so glad that his memory is better than mine!


Here you can see it in action!

video


Please feel free to share this on social media with anyone whom you think might benefit!  


Until next time,
God Bless!
Lisa Brown

Friday, March 3, 2017

To the Families Facing the Mid-face Advancement Surgery

To the Families Facing the Mid-face Advancement (aka: halo, R.E.D.- rigid external device, Lefort III):

Time really does heal.  


There seems to be a lot of my “cranio friends” whom I have recently learned are facing this dreaded surgery for their child.  As a matter of fact, there are probably more of you that I am not even acquainted with yet as well.  I know that feeling of dread all too well.  You just want to dig your heals into the sand.  My heart is heavy for you, for I too, have climbed those mountains.  But, there is good news my friend….you will get through this!!!    

It has been almost six years since my son Logan had his RED, or in other terms, worn the “halo.”  I had only been on Facebook about a year, and was still uncomfortable with the whole social media thing for myself, much less posting pictures of my son.  Logan was born in 2002, so I look back over 15 years of obstacles he has overcome, and perceive the ones he still faces in the future.  I don’t know what I would have done without God being with me in the midst of my emotional mess, or the wonderful family and friends that He had given me.  They were my life savers.  Yet, there is still something to be said about connecting with someone who is going through the same struggles that you are.  That is something I didn’t have, thus still feeling a sense of separation from the world.   My advice here to you is to take advantage of the private social media group called Apert International.  We are here for you and ready to listen and offer anything we can for you.

Our children going through these surgeries deserve ALL the love, support, hero capes, gold medals, ice cream cones, video games, soft animals, (the list goes on) that there are in the world!!  They are true little warrior heroes.  However, as parents we naturally shove our own fears and emotions down deep so that we can put on our stoic faces and become an Avenger for our child, simply for the fact that we are going to be swooping in to save the day, night, and all the minutes in between.  We will sit in a stiff chair in the ICU, night after night so that the moment our child calls out to us, we are there for them and can jump up and rescue the need.  Thirty-six hours will pass for us without ever getting a wink of sleep, but we do not complain, for we know that this is a drop in the bucket compared to what our child is enduring.  These are no simple band aid fixes, but we get to be the ones doing our best in making everything better, whether it is six wagon rides throughout the wee hours of the night, or your husband running off from the hospital at eight o’clock at night to buy your child a pillow that is just right so that they can lay as comfortable as possible with this device attached to their head.  At their request, we will push them in a wheelchair, doing laps around the pediatric floor just to leave the room, and even though their eyes are swollen and stitched shut, we can sit by the fish tank and listen to the calming bubbles.   We read a book to him at three o’clock in the morning, even though your own eyes are barely working, but you pay no mind to that, because you know that reading this story is exactly what your child needs right now, for comfort and just to hear your voice.  

We do these things because our love is so fierce for this beautiful child we have been blessed with that words cannot even describe the depths we will go to for them.   
We may be Avengers by proxy, yet we are still human beings with human emotions.  I harbored a lot of emotions during our son’s mid-face advancement., but I think a lot of us do sometimes.  It’s just easier in that moment, but it left me feeling confused about all the emotions that I was experiencing, naturally being unsure of myself. I do wish that I had the social media closed groups option that we have now, I think that would have given me more peace of mind.  Take advantage of that.  But if I were to speak to the younger me, I would say, “it’s okay.  You are human.   You are not alone…..somewhere, somehow, someone is going through or has gone through the same thing as your family….you do have a tribe!”  




 So, for those of you who wonder if you should be feeling a certain way, I say to you:

  • When you need to be angry, be angry.  It’s really not fair that our children must go through this.  Just don’t stay there.  Let it out and throw bitterness to the wind.  Vent to your trusted groups, friends and family.
  • When you need to cry, cry my friend.  Don’t hold it in.  I cried many times just sitting in my bathtub when things were just too much.  
  • When you need to laugh, even though you may think, “how could I laugh at anything at a time like this,” it’s really OK.  Laughter is good for the soul and helps the human spirit.  Nothing like some good ol’ Looney Tunes cartoons, or your favorite comedy movie.
  • If you need to seek counsel, do it.  Don’t be stubborn like me.
  • Find and seek out people who have either been there, done that, will be facing it in the future like you, or just a trusted loved one, friend, or pastor.  Yes we have to stay strong for our children and our family.  But there is only so much that a rubber band can stretch until it actually does finally break.  We are here for you!
  • If it tests your marriage, talk it over.  Let all of your honest fears and frustrations be known.   Marriage alone doesn’t need any more strain.
  • When you “miss” the old face…..resist guilt.  You fell in love with that beautiful face, it’s your child and the way that they were born, and they will literally transform right before your very eyes.  You will get to fall in love all over again.
  • You will embrace the new face.  It will take time getting used to the change, for everyone, not because you don’t find the new face an utterly beautiful, wonderful, mesmerizing, less runny nose, easier to breathe, protective-of-the-eyes face, but because the face that you once knew and fell in love with is now a different face.  So give yourself and everyone grace.
  • Turning of the screws….it may actually be so much easier than you think, at least for us it was.
  • If you fear the feeding tube, call the nurses.  Peace of mind will save you some anxiety. 
  • When you are counting the days until the removal, something we did was marked off the days on the calendar which seemed to help us all.  It can be a good visual that there is an end in sight as well as show you what you’ve already conquered.
  • Last, but certainly not least, and in my opinion most important…..pray.  Pray for it all.  Pray for healing, wisdom, peace of mind, patience, strength and everything else.  God will help you through it.

 When it is all said and done, you will look back as a family, and see the mountains you all climbed.  

God bless you all, and I am here for you!  I am in your tribe!

Lisa Brown


“There may be pain in the night, but joy comes in the morning.”  ~ Psalm 30:5

     

Sunday, December 4, 2016

Tips for Apert Feet 2: "Shoe Struggles"

Over the last fourteen years, it has been pretty tricky trying to find the right shoe with the right fit, for our son's Apert feet which can accompany discomfort, whether the toes have been separated or not, due to the simple fact that they are shaped differently.  Some kids with Apert Syndrome also have problems with the bones either on the bottom or the sides of their feet, so it can be tricky in finding what works best for your son/daughter.

Aside from the comfort, the fine motor aspect of securing shoes plays as big of a role as the fit of the shoe.  Having low tone and fine motor difficulties can affect not only children with Apert Syndrome, but other populations ranging from children with other fine motor difficulties to the elderly.   Independence along with comfort is the ultimate goal for self care.


When it came time for shoes, it seemed, (at least back then) there weren't as many shoe options for boys, but I have made a list of all the brands of shoes that we bought for Logan while he was a toddler and during his growing transitions as well.


  • Buster Brown and Stride Rite - These two brands of shoes were great for our son while he was a toddler, perhaps up until about the time for him to start Kindergarten.  Both of these shoes fit wide, which was what our son needed for his splayed toes.  The pair we bought for him also came with Velcro, so that made it even more practical!  There are still a lot of department stores that sell these types of shoes, as well as for online purchase.  The disadvantage was that they only came in sizes up until he was about four or five years old.  
  • Crocs - Another type of shoe that most people are familiar with are the Crocs.  Logan wore these for a very long time, but was only able to wear them places other than school.  They weren't safe for P.E. and recess during school hours, but they sure came in handy for home and when we ventured out into public.  There are many versions, or "off brands" of the Crocs that are sold at Walmart and Target, which is what we bought when he was younger, and they were less expensive.  
  • Shoes with Velcro straps - When it was time for Logan to begin school, we bought him a pair of regular tennis shoes that had the Velcro straps.  I found that Nike, New Balance and a few off brand shoes came in his size that were not too expensive, that had one strap that pulled over to the other side of his shoe and adhered to the other Velcro piece.  These were very practical and gave him some independence.  (As I stated in the previous blog:  "Tricks for the Apert Hands:  Addressing Dressing," ...We worked on tying shoes and laces for awhile while he was younger, but it became too frustrating for him.  Accordingly, we decided that for all practical purposes, tying shoes was not the most important skill for him to master, but it is certainly a parental preference of what is best for your child.)  The disadvantage of Nike, is that most of their shoes run pretty narrow, so this brand of shoe only worked for a brief period.  We then moved into off brands that sporting stores offer with the Velcro straps, so that he could be as independent as possible.  Now that he is almost 15 years old, we have found that New Balance has been the best fit for his feet, due to the fact that they come in widths.  We are fortunate that we have a local New Balance store that we go to now, and the salesmen know what they are doing!  They measure his feet every time we go, and they even recognize that he has one flat foot and one that is high arched.  They picked out a specific shoe for him because they also could tell that he pronates on his feet (turning them inward) so he has shoes that have a bit of a stronger material on the inside portion.  In addition to the shoe, we also purchase a memory foam sole insert which helps with the difference in his arches and supports for his foot pain.  We have not yet encountered experience with AFO's or custom orthotics.    
  • No-Tie Shoe Laces - Once our son was in a bigger youth shoe size, our choices became slim for finding a pair with the Velcro straps.  We started buying the regular shoes, but took out the shoe strings and replace them with Y-Ties which I bought through one of his school fund raisers.  In the sporting stores or online, they are called No Tie Shoe Laces.  When you insert them into the shoe you can adjust it to be as tight or loose as you need, at which then our son was able to slip his foot in and out of the shoe.  (He also needed our assistance for awhile with getting his heel into his shoes, until he got the hang of it) 

Y-Ties Shoe Laces

  • Shoe Clips - We tried two different types of shoe clips to put onto the shoe laces:  1.  Hickies,  which are stretchy, rubber-like clip inserts in place of the shoe strings.  We ordered these online, and they worked well for our son, but only temporarily.  Advantages of these were that with these clip inserts, all he had to do was pull the shoe tongue back just enough to slip his foot into his shoe.  However, the problem with them is that after a while, one will inevitably break.  But, they do come with extras in the event that one breaks.  The most practical shoe lace we have found so far, are the "performance stretch laces."  These laces come with clips that help you to draw the string tighter, and depending on the brand, they ranged from about $2.99 - $7.99 per pair of laces.  I bought the cheaper ones because truthfully they are all the same, and I was buying them specifically for the clips.   If you go to a sports store, they will be in the small section with different types of shoe laces.  You can also order them online! There are also some other shoes clips out there that are magnetic, but we haven't tried these yet.   They can range from about $5 to $100!  I happened to come across some magnetic clips called Zubits, and they had great reviews, however they run pretty expensive.  I think it will be important to read reviews for each brand in order to make the best decision for your child, as well as the budget! 
One other quick tip:  Using a shoe horn also makes it much easier to put shoes on without the back bending down and getting stuck, and they are only about $1.47 at Walmart.


On the next blog, I will be posting information on our experience with handwriting and assistive technology.  I have a LOT of information to share, not only with my son's experiences now that he is a freshman in high school, but from my perspective as a special education teacher.

Until next blog,
God Bless,

Lisa Brown

Friday, November 4, 2016

Tricks for the Apert hands 1: Addressing "dressing"


 I recently started thinking back through the years of when our son Logan was first diagnosed with Apert Syndrome in 2002, and concluded to how little information I had back then.   I did not have the plethora of resources that technology and social media has to offer today.  Sure, I had a computer, an old one that used dial up Internet service and we all know how obscure that was.  There were very few web sites that offered any kind of help in "what to expect" with a diagnosis of Apert Syndrome (and the few sites available were very limited as far as future prognosis and life goals).   It just seemed that there was a piece missing, at least for me, specific to all the developmental abilities of motor, cognitive, academic, etc. to aide parents in caring for their child with this diagnosis.


I decided to start this blog series in hopes that sharing our experiences and resources would give hope to families that are affected by Apert Syndrome, or any other disabilities of a loved one and their struggles.  Topics I will be sharing include a few recommendations from Occupational Therapy staff, but most were just from the glory of crafts stores, Google, and Amazon.  Many of the ideas listed below may seem very obvious, or even outdated and irrelevant, being that our son is now almost fifteen years old.  (Hard to believe!)   However, being on the front line like you, I know how overwhelming things can seem, especially if you have just gotten a diagnosis, or when you are just trying to make it through to that next surgery,   If you aren't able to take away anything new from this blog, as far as resources or ideas for your child, perhaps you will take away a sense of hope.  Your child will amaze you and be able to do more than you imagine.


Addressing "dressing"

Logan had his fingers and toes released in two separate surgeries - the first at nine months old, and the second at twelve months old.  The doctors informed us that he would never have the capability of bending his fingers in the middle of his bones as a result of him not having the "break" in the knuckles.  However, we were also told that he should be able to learn to use his hands and function well with the help of Occupational Therapy and adaptations/modifications/accommodations.  I don't know about you, but when I actually starting thinking about all the things we do with our hands:  pick up small objects, open doors, dress and feed ourselves, write, etc., I felt overwhelmed (and realistically I questioned, "would he be able to do all of these things?").  But, even before his surgeries, we put anything and everything in front of him and let him begin to find his way and seeing what he could do.

To begin, I would like to address some of the exercises, modifications (which will be essential for other fine motor functions as well) and transitions of how Logan learned to dress himself.   Here are some areas that were pertinent to how successful he is today:

1.  Strength - It was very important for Logan to begin building strength in his hands.  Regardless of the absence of his knuckles, we began having him practice with the fundamentals of building his strength.  Your sweet son/daughter will instinctively try things even before any surgeries to release their little fingers, so here are some ways we helped him do that, beginning in his early childhood years:  (I will address strength for the pincer grasp in the series for "writing")

  • squeezing /pushing/pulling play dough.  Sounds kind of simple, right?  After five years of teaching preschool children with disabilities, I understood how imperative it is to build tone and strength in these little hands.  As a matter of fact, it is recommended for all preschool aged children as a prerequisite for writing.  If children who do not face the difficulties of fused fingers and corrective surgeries need this, then our precious ones with Apert certainly do too.
  • pulling on a stretch tube - this was probably one of the most beneficial activities for our son.  It was fun for him because these tubes make funny sounds when you pull on them, and he was certainly into the "tug-o-war" game.  Ask your OT if they could provide one for your child to practice with at home.  If not, they cost around $7.99 online.  You can google "pop tubes."
    Pop tubes
  • wheel barrels (Logan had a habit of curling his fists inward instead of putting pressure on the palms of his hands) so we would pick up his feet slightly off the ground and let him put pressure on the palms of his hands, and eventually he would walk on his hands while we made up our own song and sang "wheel barrel, wheel barrel."  
  • zipping, buttoning, and practicing with a piece of clothing that they are not wearing is helpful.  
2.  Apparel - The type of clothing doesn't seem to be much of a concern while they are very young and still need help dressing themselves, but when school days arrive, (early childhood all the way through high school) self-care, in the means of being able to clothe themselves will be one more step of independence for them, especially when they need to take restroom breaks in the school setting.  It is just as much about social awareness as it is learning the motor skill, and to this extent, I have listed the transitions that were helpful for our son:


  • Elastic waist pants/shorts - We kept our son in elastic waist pants/shorts for as long as we possibly could.  After he had built his strength in his hands over the years he was able to pull up/down his pants or shorts with ease.  Subsequently, the older he got, the harder it was to find these clothing items because it seemed everything came with buttons after about the size of 5T. He was gearing up for Kindergarten and we wanted him to be as independent as possible, especially when it came to restroom breaks.   (During his early childhood classes, the Occupational Therapist did work on him using a tool to practice using that helped with buttoning, but it was quite cumbersome for Logan, so we discontinued it).
  • Velcro - We transitioned from elastic and starting buying pants and shorts that had buttons, although he had not mastered this skill and just wasn't ready for buttons yet.  This also meant that he would need assistance with the zippers for awhile, in which we did have to assist him at times, by pulling the pant leg down just a bit so he could get his fingers to the zipper.  Sometimes I would just get the zipper started and allow him to finish.  We decided to buy heavy duty Velcro and had sewn in place of the buttons so he would be able to fasten them.  There were some issues with the Velcro coming undone when he sat down, so we really didn't use the Velcro for a long period of time.  
  • Hooks - Now it was time for the hook and eye closer for pants.  I specifically looked for pants and some jeans that actually had the hooks to fasten and often had to order some online from Old Navy, but at times was able to find them at Target.  After a little practice, he was able to pull both sides of the waist of his pants together in order to fasten them.  

    Hook closer for pants
  • Snaps - Finally at about fourth and fifth grade, we bought a "rivet" tool for fabric from a craft store so we could attach snap buttons to his jeans since he had enough fine motor strength to pull the waist together, and it was difficult to sew hook and eye closures onto thick denim material.  We removed the buttons from the jeans and used a rivet tool to attach snaps for him to push together, which he learned very quickly.   He was able to manipulate these snaps quite well.  We bought this rivet tool at a craft store (Jo Anne's) and it cost $27.99.  I am pretty certain you could find these at Hobby Lobby, Michael's, Walmart or even order one online.
Rivet Tool with Snaps
  • Buttons -  At about sixth grade, I bought him jeans with buttons, and did not modify them to see what would happen.  It took some practice, but he had built up enough strength and confidence that he began to button jeans on his own.  This was also the age where he began improving on fastening buttons on a shirt, which is a little easier than pants because the shirt material is lighter weight. From about sixth grade on, I have not had to worry about buying special pants or trying to figure out how we could modify them!  
  • Draw Strings -   As he has gotten older and likes to wear sweat pants or sporty shorts that have draw strings, we needed to come up with a solution for him, since he was not able to tie strings into a bow very well.  (We worked on tying shoes and laces for awhile while he was younger, but it became too frustrating for him.  Accordingly, we decided that for all practical purposes, tying shoes was not the most important skill for him to master, but it is certainly a parental preference of what is best for your child.  He is able to tie strings into knots, but then there's just that....they're knots!)  So, I discovered a trick that we also use for his shoes (I'll discuss shoes in series 2) which makes it fast and easy for him to tighten any shorts/pants with draw strings.  I found some shoe clips at the sports store Academy, (you could probably find these at any sports store) that come with specific types of shoe laces called "performance stretch laces."  These laces come with clips that help you to draw the string tighter, and depending on the brand, they ranged from about $2.99 - $7.99 per pair of laces.  I bought the cheaper ones because truthfully they are all the same, and I was buying them specifically for the clips.   If you go to a sports store, they will be in the small section with different types of shoe laces.  You can also order them online!   Below is a quick video as an example along with a picture of the performance laces with the clip.  (Bare with the video, it took a little coercing to get the fourteen-year-old to allow mom to video....he seems to have better things to do, like play video games)

video
Performance laces with clip
       

Have hope.  Be encouraged.  Your child is a true gift from God.  Expect nothing less, than for your son or daughter to reach their full potential.  They will persevere and impress you with true GRIT!  

On the days when it seems that there are just too many things you have to worry about, and the overwhelming reality starts to seep in.....try to take one skill, one day, one surgery at a time.  

 I always remember my grandmother singing the song, "One Day at a Time, Sweet Jesus."  This chorus still rings in my head to this day.

Faith in the size of a mustard seed is all you need.


In the next blog series, I will be sharing our experiences with Apert feet and struggles with shoes!
Until next time,

God bless,
Lisa Brown



Tuesday, September 20, 2016

Meet the Author

On September 11, 2016, my son Logan and I had the privilege of attending an event at the Dallas Museum of Art to hear a phenomenal speech from a gentleman named Robert Hoge.  Robert was born in 1972 in Australia, and graciously shares his story in a memoir called "Ugly" that was written in a format for youth, teens and young adults.  However, "I" am already enjoying my copy, and Logan is looking forward to reading it as well.

Like many of us families who are affected by craniofacial differences, he too, shares his journey of overcoming the struggles that life has thrown at him.


        

 Here is Logan getting his copy of "Ugly" autographed and meeting Robert Hoge face to face.  We were able to speak to him one-on-one, and even though Logan is extremely shy, it was priceless for me, to hear them have a conversation.  Logan soaked in the encouraging words this wonderful author had to share.

There's nothing more redeeming than continuing to learn that you are not alone in this world.


God Bless,
Lisa Brown


Monday, September 5, 2016

You May Have More in Common with These Hands than You Think





Several months ago, my 14 year-old son (born with Apert Syndrome), made a comment to me about the scars on his hands and feet.  I don't remember his exact words, but they were related to his self-consciousness of his scars showing, and the fact that he didn't want people to see them.  This lead me to some deep thinking..




When my son was born, his hands looked as though he was wearing skin mittens.  All of his bones were fused at the fingertips, except for his thumbs.  His feet were only fused with the skin in between each toe, which gave them an appearance of "baby doll" feet.  We were currently under the care of a craniofacial team at Medical City Dallas, that included a craniofacial plastic surgeon, neurologist, anthropologist, geneticist, and a speech and language pathologist.   We had an appointment to see the surgeon on the team that specialized in surgeries on the hands and feet, what they call a "syndactyly release."   As we anxiously waited for one of the plastic surgeons (not our current doctor) to give us some direction for our son, he swiftly walked into the patient room, examined his hands in a rushed check-up, but stated that he could not guarantee that he would be able to give him all 10 fingers.  I was overcome by a feeling of uneasiness.  Here we were, brand new "thirty-something" year old parents, who just had a child diagnosed with a syndrome of "1 out of 150,000" odds.  We knew nothing about parenting much less medical babble, so who were we to question a physician?  After we got home that day my husband and I discussed it, and we both decided that something just didn't feel right .  We were not ready to accept that outcome, so we decided to get a second opinion.  We called the Shrine Hospital in Dallas and made an appointment to see a surgeon.  They ordered for us to come in and get x-rays of both his hands and feet.  The doctor came in, looked at his x-rays and said they could try to do the separation.  We asked how many cases like his had they done before, and I am pretty sure I could count them on one hand, if there were any.  Again, we went back home, both feeling apprehensive.  After all, this was a major deal. 

This was our son.  These were his hands and feet.

Immense weight fell onto our shoulders since we felt like this was not only our chance to make the best decision possible so that our son would have full function of his hands and feet, but our responsibility as advocates for our child.   We're talking about two very important body parts that determine how we function on a daily basis.  Again, this prompted more discussion.  We went for a third opinion and made an appointment with another plastic surgeon who was on a different craniofacial team.  We had heard great things about him, and he happened to be in the same hospital at Medical City Dallas where he had already had his previous surgeries.  We took the x-rays that had already been done, and the surgeon looked over them.  Right away he gave us good news that he would be able to give him all of his fingers.  He was very upfront and honest when he said that Logan's hands were going to be a hard case, due to the severity and how the bones fused: what they call "rosebud" hands. However, he felt confident for a good outcome because all the bones were present.  So after two separate surgeries about three months apart, they separated his fingers and toes using skin graphs from an area on his leg, and voila!  He had all ten fingers and toes released.  

Something else the doctors made us aware of with regards to his hands, is that children with Apert do not have "knuckles" or any break in the bones in their fingers, so they are unable to bend like typical fingers do.  However, my son, as well as other kids with Apert, adjust and accommodate like no other!  After a few years of occupational therapy, he has never let this stop him from doing what he wants to do.   Realistically, he does have certain limitations, but with some accommodations and learning over time, he can maneuver a whole lot more than we expected.  He has amazed us time after time. 

So when I look at my son's misshapen, scarred fingers and toes, I see beauty, strength, bravery, and courage.  And yes, I am his mom, and moms see the good in their children no matter what.  I also know how these scars came to be.  I can't help but think, "this must be how God looks at us, as HIS children. Even though we are scarred, we are His children. He loves us and sees the good in all of us."  No matter what.  He sees us with the utmost and purest love, and that is all that matters.  He also knows every scar that we carry.

And here are my deep thoughts:  could this also be you who has scars?  Ones that you wished you could cover up, or even a physical appearance that you are ashamed of. Maybe you know someone who does, or have a friend or relative that can relate.  Or perhaps you have scars that are not visible to anyone else.  Scars that have wounded your heart and made you feel less than worthy.  It is so incredibly hard to live up to the societal standards these days. 

What I want to say to them, to you, is this:
I hope you know how much you are loved.  Your scars do not define you, because you are a child of the most high God.  You were created for a purpose!  Whatever scar you have, visible or invisible, let that be a reminder of the strength and courage you were given to overcome.  Jesus has his own scars to prove it. 

You may have scars, but so does HE.



God Bless,

Jeremiah 29:11