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

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)

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

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

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

  

Fear Will Not Be Our Dictator

New Places, New Faces

"A group of people have already stared at me..."  We had been there less than ten minutes, and these words that my oldest son spoke into my ear punched me right in the gut.


A couple weeks ago, I had the privilege of taking my boys on a road trip, along with my mom, to visit with my sister and her family.  She lives a couple of states away from us, so our visits are few and far between.  It is always refreshing for my mom and I to spend quality time with her, as well as my boys getting to have fun with their cousins, because let's face it.....they are growing up, and before we know it, they will be grown and off to college.  

Going to new places is not always easy for my family.  My oldest son, who is now 14 years old, was born with a very rare craniofacial condition called Apert Syndrome, which affects the skull bones by prematurely fusing.  This leaves no opening, or "soft spot" for the brain to grow, as well as his fingers and toes being fused together.  He has had 13 surgeries to rebuild and remodel his skull and midface bones, as well as his fingers and toes separated with skin graphs.  Five of these major surgeries occurred before he was even a year old.  Needless to say, things have been complex for him, as well as our family.  

My son is very introverted, and is very self conscious of being "noticed."  The older he gets, the more resistant he becomes about going places.  I get it.... at the tender age of 14, teenagers start seeking independence, and dragging them out of bed before 10 a.m. in the summer is torturous for them.  This is also the age of trying to fit in and feel like you belong.  This was where my "new" worry began a couple years ago, but luckily we had two positive events that helped:  1.  We attended our very first family retreat with the Children's Craniofacial Association.  They host this event once a year in a different state so that other families affected with a craniofacial syndrome can meet, socialize, and connect on a level that allows a sense of freedom and belonging.  Just knowing that even though we all may live states (and even countries) away we are not alone!  2.  We were able to launch a district wide Choose Kind Campaign the year he began middle school to help raise awareness for Apert Syndrome and craniofacial differences.  This definitely eased his mind, and ours too.  He came from a campus of two classes per grade level in which everyone knew him, but he was about to enter into middle school that flooded with all the students from the other intermediate school that didn't know who he was.  A video was made, and other students and staff participated to help encourage everyone to read the book "Wonder" by R.J. Palacio, in addition to helping raise awareness and to spread the word to choose to be kind.  (If you haven't read this book, I highly recommend it.  Read it for yourself, to your children or grandchildren - I hear they will be making a movie about it soon)  
In his words he described it like this:  "Now everyone knows, and I don't have to worry about it anymore."  

Now, let me preface this next part by saying that we as a family have always gone places and done things like most families do:  shop, eat out, go to baseball games, arcades, movies, etc.  We made that decision for him and for our family that we would not be secluded to our house and that our children were going to have great life experiences.   I mean, why wouldn't we?  (You also need to know that he has always been a strong spirited child, which has its pros and cons). But when we were staying at my sister's house, we decided to take the kids to their community recreational center that had indoor water slides, a lazy river and such.  My boys have been there before with their cousins when they were much younger and thoroughly enjoyed it.  But the minute we arrived and got out of the car, my oldest son started saying to me, "I don't want to swim, why are you making me swim?" I have to be honest. I immediately began to feel irritated that he was trying to get out of doing this.  This seems to be his theme lately.  It's quite a struggle competing with technology time these days with a teenager.  But what I wanted to ask him was - why was he being difficult.  It's not like we've never been swimming in public, or even to water parks for that matter.  I was perplexed actually, because two weeks prior he had overcome some fears and made the decision to go to church camp for the first time, away from home.  Although he was surrounded by people from our church that he felt safe with and trusted, along with his little brother, he chose to take the leap. This would have been my knee jerk reaction, but instead, I explained to him that we were here to spend time with our family and for him to enjoy this time with his cousins because we don't get to see them very often.  Besides, he loves to swim and ride on water slides.
  
We went inside, paid for the entrance fee and walked to the pool area.  My mom, sister and I were looking for a spot to sit so we could visit while the kids had fun.  We found some chairs and were about to sit down when my son said something to me.  It was kind of loud with this being indoors and everything was echoing, not to mention that he is very soft spoken.  So I asked him to repeat what he said, and these words rang loud and clear despite the fact that I could still barely hear him: "a group of people have already stared at me."  We had been there less than ten minutes, and those words that he spoke into my ear punched me right in the gut.  So there it is.  We are back to this.   I was beginning to pick up his message.  He was uncomfortable because we were in another state where, in his mind, he worried that people weren't familiar with kids that look like him.  I guess I was naive to think that we could be past this and that everyone in the world would be able to look past the "physical differences" and move on.  But we're not.  He's not.  We are so used to going places and doing things locally.  I truly forget that being in a completely new environment, and the fact that these people may not have ever seen anyone like him before, can sometimes trigger his anxiety and feelings of fear.  I really had to pause for a moment, and collect my thoughts on what to say.  But the truth is, I don't always know what the right thing to say is.  I don't want to dismiss his feelings by saying something to minimize the situation, but at the same time I don't want to feed into his fear with my maternal bleeding heart.  So, I try my best to validate his feelings, yet still give him some truth, encouragement, and hopefully a slight sense of empowerment.  My words to him were:  "I am sorry that people have stared at you, that must make you feel uncomfortable.  Remember, sometimes people look, but don't stare, simply because they are curious.  They may be wondering what happened, since your fingers and toes look different.  But, if they continue and it becomes an unkind stare, then you can always smile at them or say hi."  I knew with him being such an introvert, this was a little unrealistic, but it was the most forgiving thing I could come up with...until my passion rose.  My empathetic heart was wrenching, almost a little angry, simply for the fact that my son has to feel this way and deal with this on a daily basis.  So I ended it with: "this is a moment where you can make a choice - to be brave, hold your chin up high knowing that you are loved and that God made you and created you just the way you are.  Do the things that make you happy and not let fear control you.  Or - miss out on fun and joyous things in life because you are too afraid."  I am so proud to say that he chose to be brave.  Just like he has for the last 14 years.  And when I saw the smile on his face as he floated past us going down the lazy river, my heart could rest again.  

And even though this will be something he will have to conquer, time after time for the rest of his life, I hope now that the seed is planted.  The seed that will help him to grow stronger in who he is, and to want to bloom even if there are weeds around him.  

Fear will not be our dictator.

This lesson was not just for my son.  It was also for me.    

God Bless.

Time to Do Business

Moms:  Do you ever feel like you don't even have time for your own thoughts and feelings?  Does the day-to-day hustle and bustle, kids' activities, work, home, volunteer work, end of the school year calendar, sports, doctor appointments, surgeries, therapies, etc (the list could go one) leave you feeling drained of everything you have, instilling that first world parody of: "I just can't even"?  Yeah, me too.
However, I recently had the opportunity to reprieve for just a few hours, and it is amazing what difference it makes, to be able to just sometimes be alone.  It's quite an epiphany actually, to really allow ourselves this gift.
I have been watching over my parents house while they are away, and decided this time to go alone.  Of course I asked my boys if they wanted to go, since we are temporarily in an apartment until we close on a house at the end of the month, but they said, "nah, I'll stay here."  They're finally old enough now to be able to take care of themselves for just a few hours.  So, without hesitation, I left.  I arrive at my parents' house, watered their gardens and took full advantage of their offering of: "use the hot tub if you'd like."  So, I did.  I sat in the hot tub hoping my knotted and stressed muscles would subside.  For a full hour!  No one around, no one asking me one thousand questions, no one demanding anything.  I'm pretty blessed to even have access to such gift.  But, I have to admit, it was strange being there, alone.  Just me, myself and I.....and all my pent up thoughts and emotions.  But I fought the guilt, and enjoyed it.  I was able to decompress all the changes that have happened in our lives this year:  selling our house, the school year, the hunt for a house, living in an apartment, coming to grips with the fact that our oldest will be entering high school next year, so the whole focus changes:  it's not only about academics now.  There's this thing called: life plans.  
Just in the few hours I was able to spend time for myself, I feel I was finally able to focus on the positive things in my life right now, and not the "woe is me."  Am I still tired?  Yes.  Do I still have stress? Yes.  But in my moments of seclusion, I was able to be still.....and be with God.  I was finally able reconcile and do business with God.  No distractions.  No, "mom what's for dinner", or the dog needs to go out, or work to be done on the computer, random conversations, or dishes, and yadda yadda.
I write this blog because I know there are some exhausted moms and dads out there, especially ones who have children with special needs, who feel the desperation of just "needing a break."  And sometimes, the break needs to be alone time.  It will come.  Pray about it.  I personally know, that if I didn't have my relationship with God, even in those moments when I'm even just too tired to pray (I'd like to think we've all felt this way) I would feel defeated.  But God is always there.  He never leaves my side, even when I am down in the dumps, He speaks to my heart and reminds me to be patient, and do not be afraid.  I am definitely guilty of both.      
I am so glad I was able to "do business" with God today.  My prayer is for all of you parents, who need that alone time to just be still, and do business with God, giving Him your burdens and praising Him for your blessings.  

"The Lord will fight for you, you need only to Be Still."  ~ Exodus 14:14

God Bless, 
Lisa Brown

Sometimes It's the Big Things That Count

January 4, 2016 - Update on Logan

It's been awhile, so I thought there's no better time to update on how Logan is doing, than the beginning of a new year.

We had an appointment today with the pediatric neurosurgeon to review an MRI that he had done this morning at Medical City Dallas, but let me rewind about 9 weeks.....

Logan had started having headaches again, so we began the process of elimination by taking all the steps that we know so well, to try to figure out the source of the problem.  Took him to the pediatrician - no sinus infection, just treat him for allergies.  Still, the headaches continue.  Call to the craniofacial surgeon, who asks for an updated ophthamologist reporting that there's no optic nerve pressure.  Luckily, we know this drill and had already had it done right before school started.  There are usually three things the surgeon checks out before making any big surgery decisions: 1. optic nerve pressure 2. sleep apnea (which there are two kinds:  obstructive airway apnea, and central sleep apnea) 3. brain scans.

The optic pressure was ruled out in July; his sleep apnea is minimal now (he had the obstructive kind) since he had his mid-advancement surgery, so the brain scan was the final piece of the puzzle.
In looking at his brain scan today, the neurosurgeon said in a nutshell that everything looks ok inside.  His ventricles are larger than they were in 2009 (date of last MRI), but he has always had large ventricles, and since he had a cranial vault a couple of years ago, this is likely why they are a little larger because he was given more room.  They sinus cavity seemed in tact and all good.
I know a lot of this sounds like mumbo jumbo, but the bottom line is this:  He does NOT have to have surgery any time soon!  So, the final outcome:  we will still treat his headaches with over-the-counter medicine for now, and just monitor them if they continue or get worse.  We will still have an annual visit with the craniofacial surgeon, but my instincts tell me that he will review the reports and send us on our way, surgery free as well.
It gives us peace of mind at least, to know that there have been no drastic changes in his brain, and that there is no surgery on the horizon!  God continues to answer our prayers.
What a great way to start 2016!
Our journey continues.

God Bless,
Lisa Brown