Tuesday, July 26, 2011

Fibular Hemimelia -Post Surgery -Week Six --Half Way Finished Turning

For those of you who don't speak fixator language, Ethan is half way through the "turning" phrase of the lengthening process.  Basically, we will turn the struts on the fixator for approximately 12 weeks and then stop.  The fixator will stay on for another 12 weeks so that the bone can consolidate (harden).

The first picture is Ethan's leg at 4 weeks and the second is at 6 weeks.

At this point, his leg growth was about 2 centimeters.
 Today, the growth has reached around 3.2 centimeters --which is over 1 inch!  

We are trying to achieve between 5-6 cm, so Ethan is right on track!

At the six week point, Freddie and I feel like we can breathe a bit.  Ethan has regained the ability to bend his knee --thank you Lord, and this makes life for him and for all of us so much easier.  Now, we are able to detect a pin site infection and have become much better "nurses."  Here is a bit of his progress.
Week One:  Hospital -wheelchair confined.  Pain medicine every 4 hours.  Physical therapy evaluation.
Week Two:  Able to use the walker for a few steps only.  Cannot bend his knee at all without great pain.  Wheelchair is necessary for all trips.  Therapy is focused on bending --to regain range of motion.  Pain meds are given every 4 hours.
Week Three:  Able to use the walker for a short duration --a trip down the hall for instance.  Still unable to bend.  Therapy is VERY difficult because of the pain trying to bend --especially therapy in which he is on his belly and his leg "pushed" toward his body.  Dr. Standard actually changed the therapy exercises to omit this --because it was such a source of anxiety for Ethan, and the therapists concentrated on other bending exercises --such as wall bends or step-ups with a step.  Pain medicine is given about 3 times a day.
Week Four:  Able to use the walker for longer duration and bending is MUCH improved.  This week Ethan can actually sit at a table with his knee slightly bent long enough to eat a meal.  The wheelchair is still necessary for trips --or for long periods of time --like doctor's appointments.  He cannot sit with the knee bent for more than 20 minutes or so.  From a therapy standpoint, he can bend 75 degrees.  Pain medicine only before physical therapy.  Pin site infection --required 2 antibiotics to clear completely.
Week Five:  Focus shifts from the ability to bend to the ability to straighten.  Children in fixators are most comfortable neither bending nor straightening; thus, they tend to keep their legs a bit cocked which is a terrible position as far as healing and progress is concerned.  Ethan uses the walker the majority of the time and can actually walk without the walker and maintain his balance -inside.  The wheelchair is still necessary for trips to the mall, for instance -or to see a movie.  Pain meds before therapy only.
Week Six:  After a lot of stretching exercises, Ethan has achieved 95 degrees with knee bending and 0 degrees with leg extension (which means he can fully straighten).  Again, the wheelchair use is limited to long period of time.  Pain meds before therapy only. Second pin site infection --same top pins.  Since week two, Ethan has had land therapy 3 days per week and pool therapy 2 days per week.

Today makes seven weeks since the surgery, and it has been a long road, but looking back and seeing how far he has come is quite amazing.  God has been so good to us and has provided the strength and endurance that we all have needed.  He has also given us time to be a family and to explore Maryland.  To mimic a commercial:  The Washington Zoo:  free; the Washington Museums:  free; Fort McHenry:  free; Touring the Naval Academy:  free; the National Aquarium:  free (thanks Granny Carol);  Chuck E. Cheese: free (thanks Granny Wanda); first Major League Baseball Game:  free (thanks Papaw Fred); Ocean City:  free (thank you Lord);  smiles like the ones to follow:  priceless!

The ground of the Naval Academy are quite beautiful!

 It's not every day that you run into Spider Man!

Fishing from the peer!

 Beautiful Sand Art at Ocean City!

Now, what is my favorite of these latest snap shots?  Check out the one below from the Naval Academy Museum!

Maybe this will become my new motto.  Isn't it yet another message of Hope?  What is the greatest of lessons that the Lord has taught me these last seven weeks:  perseverance.  When you feel like giving up, don't.  It's that simple.  As Christians we have surrendered our rights, especially our right to hopelessness.
Psalm 71:5 ~ For thou art my hope, O Lord GOD: thou art my trust from my youth

Sunday, July 10, 2011

Fibular Hemimelia --Oh say can you see?

I have told a few people with interesting life experiences or circumstances that they need a blog.  Mostly, they comment that they just can't be quite as positive as me.  Well, let me tell you ... The last few days I have had a party.  No, your invitation wasn't lost in the mail ... you just weren't invited.  Now, if you had shown up with a bag of Double Stuff Oreos, you might have been let in, but inviting you would have defeated the purpose.  Yep, it was THAT kind of party.  Doubt was among the invited guests, along with self-pity, why me showed up early, and even low self esteem made an appearance.  We partied hard for a few hours and I was left with a big mess to clean up!

Seriously, life is hard.  Sometimes I lose perspective.  Sometimes, despite the progress that Ethan is making and the provision that God is supplying, I am overwhelmed.  It's not easy watching your child struggle, but sometimes it's not that he can't get through the physical therapy or the day to day adapting to life in a fixator --it's that I don't want him to HAVE to get through something or HAVE to learn to adapt.  I hurt for him --and I want to go home to some sense of normalcy.  Sometimes.  And that's honest.

What's honest, too, though is that I don't stay in Sometimes for very long.  I'd probably have a lot more parties, but my Father, He won't allow it.  In fact, He shows up, and I just can't stand to disappoint Him. He brings something with Him, too --a new perspective.

Now, of all ways for God to speak to me --this week it was through the "Star-Spangled Banner."  I know it's strange, but bear with me --and get out your tissues.  We visited Ft. McHenry.  Now I'm a history buff, but I had forgotten the details of the story.  Picture this:  a young lawyer, Francis Scott Key, boards the HMS Tonnant with Colonel John Skinner in order to negotiate the release of an American prisoner, Dr. William Beanes.  Once on board, Key and Skinner learn too much about the British position and their intent to attack Baltimore --and they are not allowed to leave.  In fact, Key is forced to watch the British bombardment of Ft. McHenry.

Francis Scott Key was encamped about with enemy soldiers watching what he thought would be a defeat for the Americans --given the strength of the British Navy.  On the morning of Sept. 14, 1814 --by the dawn's early light --however, what Key saw would inspire our nation even today.  The battered American flag flew proudly over Ft. McHenry signifying an American victory --and Key jotted down the poem we all know that begins, "Oh say can you see ..."on the back of a letter he carried in his pocket.

Okay, what do Francis Scott Key and I have in common? Well for one, we have both been encamped about by our enemies.  Remember the party --my guests?  Someone invited them alright --

Ephesians 6:12 --For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.

Someone has a plan for me --and this plan includes depression, a loss of testimony, and ultimate defeat here on earth.  Satan's plan is subtle --and sometimes looks inviting.  Parties like mine are quite popular ---just look around.  Actually just look inward, stay focused on yourself and your present circumstances --and Satan is gaining ground.

How do we achieve victory instead of defeat?  We do what Francis Scott Key did in those early hours of Sept. 14, 1814 --we look up. We get up each morning and we look to our victor --to the one who died to set us free.

Lamentations 3:22-23
 It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness.

Self-pity, fear, doubt --all forms of bondage?  How do I know?  Oh, I was a slave --didn't I tell you?  I was a slave to sin, but I'm a slave no longer --oh no, He hath made me free! (John 8:36)  My Victor tells me, too, not to return to slavery -

Galatians 5:1 -Stand fast therefore in the liberty wherewith Christ hath made us free, and be not entangled again with the yoke of bondage.

Stand fast --did you catch that?  Oh, that's what I'm going to do --with His help.  I'm going to stand firm, hold my ground, be that tree again --the one that's firmly planted.  I'm going to get up each morning and look for Him --the one who secured my freedom.

The battered flag that Francis Scott Key saw flying above Ft.  McHenry is housed in the American History Museum --and for only a few minutes each day, patrons can look at its faded stars and stripes.  What makes Key's story resonate with me -- what does that battered flag symbolize for me?  Hope.  One simple word.  Hope.  Why do I have hope, despite my circumstance, despite my weaknesses?  Because my hope isn't in myself --it's in my God --and He doesn't disappoint.  I'm in a different state, in a different home, in a difficult situation, but my God, He's the same.  He was God the day before Ethan's surgery and He's still God today.  He still promises this is for my good.  He still promises to be near.  He still promises to finish this work He started in me.

One last note:  When my friend Kelly visited, Ethan asked, "Kelly, have you ever had a pity party?"  She admitted that she had ... that we all have.  Ethan responded, "When I found out I had to get this thing on my leg, I felt bad for myself.  But then I saw all the other kids with their fixators ... and I was okay." Sometimes, we just need to look around ... change our perspective ... and we'll realize that we're not alone ... that we all have "fixators" -- that there's nothing new under the sun (Ecclesiastes 1:9).  What we, as Christians, must learn to do --is to "endure hardness as a good soldier of Jesus Christ" (2 Tim 2:3).

Tuesday, July 5, 2011

Fibular Hemimelia -Little Sister

Because she has been right here, every step of the way.  Because she is Ethan's greatest fan.  Because she inspires me so ... This blog is for you, Emily Ann.

Tonight, I've sat thinking about what to write, how to capture in words her true nature.  She is, in a word, beautiful!

Now, most moms are a little biased, but I'm just telling it like it is.  She wants to be a princess when she grows up, loves, more than anything, to practice ballet, and won't leave home without a baby doll.  YET, catches worms and frogs, chews her finger nails religiously, and has one of those faces --you know, the ones that are perpetually dirty, covered in Cheetos or sticky ice cream.  She's the greatest of girls.

She is, in a word, beautiful.  Have you seen bluer eyes? 

Oh, where has this little version of my girl gone?

Oh, I think she'd bring home a crown in any beauty contest, but she never will.  Why not?  Because they've got the categories all wrong.   What do I mean?  I mean she didn't do much to achieve natural beauty.  She just happened to be the recipient of some good genes.  Yep, that's right --she got those eyes from her Daddy!  I don't want her to collect trophies for her outside ... for "Favour is deceitful and beauty is vain:  but a woman that feareth the Lord she shall be praised" -Proverbs 31:30.  We're going for the bigger crown --you know, the one that she'll lay at the feet of her Saviour!

I saw this sign on a near by lawn, and thought it should be my motto (check out the second rung written in red)!  Yep, I thought, this is a Facebook profile picture waiting to happen.

 Then, I had second thoughts.  If you post a sign like this as your personal motto, then you better live it.  Emily, sweetheart, it's your motto, not mine.  Since we've been in Baltimore, I've had the privilege of seeing the best in my children.  The image of Ethan that I will never forget is one of hands clasped, eyes closed, prayers raised to God that his therapist would come to know that "Jesus is the Messiah, the Lord of Lords, the King of Kings."  What compares to hearing your child burdened with the salvation of someone they care for?  Emily's prayers always include her brother and that "God would please, please Lord, help his leg."

What she has taught me here is one of the fundamental roles that I, as a woman, should fulfill.  She is an Encourager --perhaps that's her gift.  From the time Ethan wakes until he goes to sleep at night, she never fails to speak to him encouraging words.  She praises his efforts to walk, and she stands at the physical therapy room door telling him, "Calm down, you can do it."  She watches him swim for two hours a week, while she hasn't had the chance in a month, and asks, "Can you see me, Ethan" --as she ducks under a wooden bar on the outside of the pool, playing with him as he exercises.  She's accepted the fact that he needs a lot of our attention much more gracefully than would any adult.  She's watched Ethan open lots of mail and receive many presents, yet when she received a little gift of money in a card today --and he didn't, she immediately offered over the card to him.  And no, she doesn't even understand what the word begrudgingly means --it's just love, that's all, she just loves him.  

She loves him more than herself, and her selflessness brings me to tears, making me ask, "Who do I love that much?  Do I love my God that much?  My husband?  My children?  My family?  My friends?"  Do I shower anyone with affection the way that she so generously showers everyone.  You cannot visit us without a thousand Emily kisses and hugs or without hearing how much she loves you.  Do the ones I love know I love them, like they are so assured of her love?

God reminded me tonight that Emily's love for Ethan is an answered prayer.  I had forgotten how many times I had prayed that they love each other --and that Emily, especially, love her brothers and be a strong nurturing force in their lives.  To God be the glory --and may He continue to develop in her a generous heart.  May Ethan love her as much ... and as selflessly, as she loves him.  May Josh watch over this little girl, protecting her and leading her by example.  May she continue to inspire me to worry less about the outside, fleeting vanity, and more about become gorgeous on the inside!

One last pic:  after a long night of fireworks, Emily gets a ride with her best buddy.

Saturday, July 2, 2011

Fibular Hemimelia -Fixator Fun

 Okay, for those following the blog --the pin site results:  positive.  Actually the first picture that looks like crusted amber (I know it's gross) is actually, according to the PA, normal.  Any drainage from the pins that is clear, amber, basically see-through, is normal.  The second picture of the top pin, however, is the troublesome one.  By the time we saw the PA on Friday, the drainage was definitely green goo (I know it's gross).  Lesson learned:  some pin site infections are apparently easier to diagnose than others (Now I'm no nurse, but green goo --definitely sent up a red flag!).  Some pins, in fact, look fine, but can be infected, and others that seem rather "drainy" can be normal.  Dr. Standard sends his patients home with two prescriptions for antibiotics because the infections are so common.  Ethan had a low grade fever the night before the drainage started --I guess another symptom, and we started him on a round of antibiotics.  The doctor "upgraded" the antibiotic on Friday and cultured the pin.  Today, he looks much better --thank you Lord.

Okay, enough of the nasty medical "stuff."  Have you ever spent all day at the doctor's office with your child?  You know, the appointment is at 10:00 and you have to wait an hour and a half.  Then you're moved into a room where you wait another twenty minutes.  Then you have one on one time with the doctor.  Then you have to have some sort of blood test ... which means you wait at the lab for another twenty minutes.  Then you have a prescription to fill ... another half an hour.  So, what started as a simple 10:00 appointment that you thought you'd be finished with in time for a McDonald's Happy Meal, ends up an all day affair.  You're tired, your child is whiny, and everyone is hungry!  Well, that seems to characterize our last few weeks!  We've been tired and whiny -um, not hungry though.  If you squeeze one of my kids too hard, a chicken nugget is likely to pop out!

What has been the cure for our blues?  Well, if you have to be away from home for the summer, then Baltimore is the place to be.  In his wheelchair, Ethan has toured the city.  Did I mention the fact that everything in Washington D.C - all the monuments, museums, the zoo -is free?  Now, that suits our budget!   (Side note:  the zoo if free; parking, however, cost us $25 dollars! what highway robbery in our Nation's Capitol?!)  Did I also mention that when your child has had major surgery, the visiting grandparents are putty in his hands?  Hence, we've gotten to see and do some pretty great stuff!

If your child has an upcoming surgery --or if you love Ethan and are hoping that all of his days are not spent just in physical therapy or being x-rayed and cultured --take heart.  The following pictures should uplift your spirits!  Also note:  if you visit us, you will probably make your way into the blog!

And this is how we travel!

The Boatyard seafood restaurant in Annapolis was voted number one family restaurant last year! --I'm not sure why?  Not that it wasn't good food, but the inside had approximately four tables ... How does the "bar" qualify as family friendly?  It is, however, only a walk to the water.

After the bar, we thought we needed to get back into church.  Just kidding!  This is Faith Baptist Church in Glen Burnie where our friends who live upstairs attend and have graciously taken us and introduced us to their church family.

 The Washington Zoo.  Can you see the lion in the background?

Emily's favorite animal:  the cow! Go figure!

Our first visit from Family and Friends!

 Can you say cheese?  What about CHUCK E. CHEESE? Yep, there's one in Maryland, too!  Ethan and Emily had a blast with Granny and the gang!

Making his way through the restaurant.
Setting the walker aside to play a game!

Your are never too old for Chuck E. Cheese!
 Pretty Cowgirl.


Does your child have a dream?  Well, one of Ethan's wishes came true:  a hot dog from a "real" hot dog stand -in Washington D.C.!

Megan is smiling --while Kelly, on the other hand, reflects on the $8 dollar lemon ices they are enjoying! Yep, that's $4 each!
 Let the museum tour begin!  What lovely looks on all our faces!

 Freddie and his idol:  Ronald Reagan.

When asked, "What do you want to see next?"  Emily responds:  "McDonald's!"

 Who is he pointing to?  Who else:  Abraham Lincoln!           

Charlie for President?
 Or maybe Josh?

Sorry, guys!  My vote is for Ethan Frederick Graham! (Doesn't his name have that George Herbert Walker sound to it? 

Ethan's favorite place cannot be photographed:  the National Archives.  Why did we trek all the way there?  Three words:  The Emancipation Proclamation.  (I told you he was going to be President.  What six-year-old gets excited to see the Emancipation Proclamation?  Please don't tell him it was only a facsimile.  It would break his heart!)

Another Grandparent Visit = Another Trip!

On to the Inner Harbor --where Emily and Papaw Bud enjoy a "rest"!
Baltimore's World Trade Center
 The Inner Harbor is bustling with activities!
Looking at the ships in the harbor.
 A grand, six story aquarium!  Great jelly fish exhibit --and did I mention, dolphins!
 Granny Carol points out some sharks!
Can you see the alligator behind her head?  Or is it a crocodile?  Yes, it is alive!
 Chesapeake Bay Bridge!  We crossed over and got a great look at the water.  Too bad we can't go for a swim!  Next year, Ethan, we'll enjoy the ocean!
And there's simple back yard fun --thanks to a kind, church friend.

 Today, what did we do?  We met the Chick-Fil-A cow himself --um, or is it herself.  Udderly impossible to tell.  Ethan and Emily loved the "Eat Mor Chikin'" mascot!

All of these adventures have been brought to us because of one little boy and one fixator.  Although we've had our share of difficult days, we shouldn't  forget to Praise God for the moments of laughter!  Each morning Freddie wakes the kids singing, "It's time to rise and shine and give God the glory, glory! Rise and Shine and Give God the glory, glory, Children of the Lord!"