Thursday, March 24, 2011

-And There We Saw the Giants -Numbers 13

When I went into preterm labor with Josh at 4 a.m. on a Wednesday morning--at 33 weeks, let's just say that I was scared.   I was twenty-three, and this was my first pregnancy.  Aside from 50 pounds of weight gain (yikes, I know), the experience had been relatively worry free.  After rushing to my local hospital and seeing my OBGYN, I was soon transported by ambulance to another hospital --one with a NICU (neo-natal intensive care unit) for precautions.  Oddly enough, my new OBGYN was Dr. Jekyll (I kid you not).  After assuring me that Mr. Hyde was the "bad guy," Dr. Jekyll tried to calm my nerves by laying out our "birthing" plan.  Josh was breech, not uncommon for 33 week old babies, and since my water had broken, making turning him impossible, he would be delivered by C-section.  I would take medication to stop my labor for two days until I made it to the 34th week. I would get steroid shots to help develop Josh's lungs, and on Friday morning, the medication would stop and we'd wait for contractions to begin. 

I had a few days to cry and to worry, --and to pray to stop crying and worrying!  What I also had time to do was settle on a middle name.  I knew that he was Joshua --it had such a beautiful, soft sound and conjured up images of exactly what I got:  a little blond-headed ball of sweetness.  But the middle name wasn't so easy. 

Someone brought a baby book to the hospital and flipping through pages, I saw it --his name.

CALEB:  "like the heart"; Hebrew:  bold

What came to mind with the combination (Joshua Caleb) was the story of the 12 Israelite spies and the two brothers in particular who, unlike the others, knew they could face the giants in the Promised Land.

Do you remember the story?  Here's a recap.  (Bear with me, it gets good!)

The children of Israel have made it to the promised land, you know the one flowing with milk and honey, and after all the drama -- the Egyptians, the Red Sea, the manna, the murmuring, the complaining, they're ready to relax for awhile.

First, they send out spies to search out the land to see if all the good things they have heard were really true (milk and honey ... let's find out if it's too good to be true).

Sure enough, the 12 spies return with reports of grapes the size of grapefruit, and what about the milk and honey? --Yeah that was there, too!

Then, what's the problem? --Why all the downtrodden looks? 
Oh, didn't we mention the GIANTS?

Now, I don't know about you, but if I had finally made it to a land promised to me by God --overflowing with not only his nourishment (milk) but his pleasure and abundance (honey) --to find men so great that they made me look like a grasshopper, I'd have the same response:

Numbers 14:1 -And all the congregation lifted up their voice, and cried; and the people wept that night.

Well, why the people are crying and the other ten spies are quickly saying, "You're not getting me in that land --even if it has milk and honey," two are responding quite differently.

6.  And Joshua the son of Nun, and Caleb the son of Jephunneh, which were of them that searched the land, rent their clothes:
7.  And they spake unto all the company of the children of Israel, saying, The land, which we passed through to search it, is an exceeding good land.
8.  If the LORD delight in us, then he will bring us into this land, and give it us; a land which floweth with milk and honey. 
9.  Only rebel not ye against the LORD, neither fear ye the people of the land; for they are bread for us: their defence is departed from them, and the LORD is with us: fear them not.

Now what did God think about His people's reaction --and the reaction of Joshua and Caleb? 

22.  Because all those men which have seen my glory, and my miracles, which I did in Egypt and in the wilderness, and have tempted me now these ten times, and have not hearkened to my voice; Surely they shall not see the land which I sware unto their fathers, neither shall any of them that provoked me see it:

22.  Doubtless ye shall not come into the land, concerning which I sware to make you dwell therein, save Caleb the son of Jephunneh, and Joshua the son of Nun.

Joshua and Caleb are in ... the others are out.  After 40 years of wandering in the wilderness, Joshua and Caleb will enjoy the spoils, but the others will not enter the land!

Joshua and Caleb saw the giants in the land just as did the other spies.  So why were they not afraid?  Because they believed.  They remembered that their God was with them. 


In all my 23 years, these were the first giants I faced --preterm labor, a C-section, a premature baby, fear ...

And where was God?  He was right there with me! 

Josh was born at 11:21 on Friday, March 13th (yep, Dr. Jekyll, Friday the 13th, I know, I know).  He spent only 3 nights in the NICU and went home with me on his 4th day of life --all 4lbs and 12 ounces of him.

Why am I telling this story --umm, isn't this blog supposed to be about Ethan --and fibular hemimelia.

Well, yes, but more than that --it's about Giants! -and it's about a big God who stays with us as we face them.   You know God could have easily removed the giants; after all, it was His Promised Land and the Israelities were His people.  So why didn't he?  It would have certainly been easier for His children -or so it seems.  Yet, it wouldn't have been best.  In their 40 years wandering, they learned of their God --they learned of His goodness, His provision, His grace, and His love --and they wouldn't have learned about it any other way.

In case you haven't noticed, there are Giants out there.  And while you're on your way to the Promised Land, you're going to encounter several along the way.  You might pray and see God remove some, but more than likely, you're going to learn of Him --His goodness, His provision, His grace, and His love.

Oh how I love Him, and as Ethan faces his first giant, I pray that he does so without fear, knowing that His God is with him --as He was with his big brother, Joshua Caleb.

Friday, March 18, 2011

Bring on the Shoes!

Have you ever taken a toddler shoe shopping?  Yeah, it's frustrating!  Imagine that your three-year-old has just found the perfect pair of light up Sketchers --you know the pair that resembles a white police car with strobe lights?  Now image that after trying on three different sizes while chasing him down the aisle and holding his leg between your knees, you find the perfect fit.  Okay, now start all over again.  You have to find a matching shoe for the left foot that is usually two sizes smaller.  Shoe shopping has been a nightmare!  Not only is it nearly impossible to find matching shoes in different sizes, but it must be like having twins --because you're searching for shoes for two very different feet.  Did I mention that one foot is quite wide while the other is narrow, given it's missing a toe and all.  You know, too, how brands vary --you can't just assume that the size 10 fits the left because the size 12 fits the right (believe me, I've tried that --unsuccessfully!).  When you cross over to Kids' Sizes -a one or above, try finding the matching "infant" size shoe!  Yeah, you guessed it --nearly impossible to find.  One last thing to whine about --the expense!  Don't complain about the cost of a pair of Nike's until you buy two pairs and then discard two shoes!

Solutions?  I've found a few.  Check out The National Odd Shoe Exchange on-line (I have to admit, I didn't contact them --you have to write a letter to a physical address--unless their website has changed).  They will send shoes to anyone in need on an oddly matched set --for a donation.  We actually sent several pairs of Ethan's odd left overs to the company.  It's hard to throw away perfectly new shoes when there are children whose parents can't afford to whine about buying two pairs!  You can buy three pairs of matching shoes.  For example, you buy two pairs of shoes - size 9 and size 11.  Go ahead and buy the size 13 --you'll already have the left shoe in the size 11 box that will match the size 13.  This will at least save buying one additional pair of shoes.

Nordstrom sells mismatched shoes!  If you try to buy on-line, then you'll have to contact a customer service representative.  Be careful in person --we were so happy to find a Norsdstrom in Baltimore and couldn't believe we could buy one pair of shoes (one shoe to fit each foot packaged in one box).  The overly helpful salesman wanted to handle everything himself, and when we got home, we discovered a box with two left feet!  How disappointing!  We're taking them back this summer --somebody's gotta give us a break on that one! 

Shoe lifts!  We were hesitant to believe the prosthetics tech who assured us that when the lift went inside Ethan's shoe, he could probably wear the same size.  Well, she was right.  His shoe was lifted on the outside, but he also got a shoe insert!  Hallelujah!  In December, Ethan received his first set of same sized shoes!  (I don't know about you, but it reminds me of the magical shoe elves who fix the cobbler's shoes while he sleeps! --remember the cute cartoon?)

Thursday, March 17, 2011

Fibular Hemimelia, Tiny Toes, and Cute Pictures

Wikipedia, the on-line, often UNRELIABLE encyclopedia, defines Fibular Hemimelia as: "the congenital absence of the fibula and it is the most common congenital absence of long bone of the extremities." It is the shortening of the fibula at birth, or the complete lack thereof. In humans, the disorder can be noted by ultrasound in utero to prepare for amputation after birth or complex bone lengthening surgery. The amputation usually takes place at 6-months with removal of portions of the legs to retro fit them for prosthetic use. The other treatments which include repeated corrective osteotomies and leg-lengthening surgery are costly and associated with residual deformity."

First things first.  My ultrasounds did not detect fibular hemimelia, nor do a lot of ultrasounds!  I feel blessed that I did not receive such news via ultrasound and, instead, was able to enjoy the miracle of a beating heart and waving fingers.  Had I known the diagnosis while pregnant and consulted on-line sources, I am sure that I would have traded a joyous pregnancy for a pregnancy filled with worry and fear.  That said, if the condition is detected in utero, then you have time to prepare!  New advances are being made each day in the orthopedics fields, and perhaps one day soon an amputation will never be listed as a "treatment"!  Also, take heart --there are a varying degrees of severity with regard to FH.  Ethan, for instance, has a mild form and amputation was never even mentioned at any doctor's appointment. 

When I first started researching the condition, I found no pictures that looked anything like his level of severity; thus, most of the treatments mentioned on-line didn't apply to us at all.  In case someone might need a picture that looks like their child, I am including pictures of Ethan's legs from day one in the hospital.

(Excuse the white, lacy gown --it's my husbands' family's "Coming Home" attire that every baby has worn home, beginning with my husband's big sister and ending with the family's latest addition --little Grady). 

You have to admit --that little foot is sweet!  I was, as I'm sure most moms would be, worried about what everyone would think.  Would children make fun of him, adults gawk --would he be self-conscious?  In all actuality, very few people even noticed.  Some of those who did asked questions, some didn't.  Little kids found his toes to be quite "awesome" -and big brother Josh enjoyed showing them off to his friends.  No one in his six years has made fun of him because of his foot.  Maybe those days are to come, but even so, what a chance to learn lessons about what's really important in life.

  When looking at another child, Ethan (around age 2-3) asked, "Momma, does he have ten toes, or did God make him special like me?"  Isn't that what it's all about -perspective!

The above pictures were taken around age one.

Don't you just want to kiss those little toes!  I was so worried that he would not be able to walk --that the difference would make him wobbly or so out of balance that taking steps would be too much for him to handle.  He certainly proved me wrong; he simply self-adjusted, sort of popping out his right leg to account for the discrepancy in the left --and he never missed a beat!  His first steps were right on target at around eleven to twelve months. 

These must have been around age 2 -- look at those banged up legs!

 We were blessed to discover another little boy who shared our pediatrician who was also diagnosed with FH and had four toes on his left foot!  Finally, a friend for Ethan with whom he could closely identify!  Too bad the family moved cross country shortly after we met.

As you notice in the pictures, his leg lenth discrepancy has remained consistent since about nine months of age.  As of today, he has a 5.2 centimeter difference (about 2 inches).  This picture was taken just a few weeks before Ethan finally got a shoe lift.  This was a particularly telling picture because he seems so out of alignment. 

Because his condition is milder than some, he did not undergo any treatment these last six year, aside from yearly X-rays.  I do believe, however, he would have benefited from a lift earlier -although he has never complained of back or hip pain.  According to our first orthopedist -and seconded by the new orthopedist --long term effects of such a discrepancy would result in back/hip pain, knee deterioration, arthritis, etc.  Children, though, as we all know, are resilient --and his little body simply adapted to the difference.

So, if your baby looks similar to mine, I hope these pictures bring you hope.  He has more than enjoyed being a normal little boy --who just happens to have FH!

Wednesday, March 16, 2011

The Beginning

Josh (and me) when he was four!
When my oldest son, Josh, was five years old, a week long headache sent my husband and I driving to the E.R. expecting a sinus infection or to be told to give him some Tylenol and call the pediatrician on Monday.  What happened after a routine CT Scan, however, forever changed my life.  "It's a good thing we did the scan," the doctor stated rather bluntly, "he has a mass on his brain."  How do you recover from such words?  I thought that I wouldn't.  Only a week later, we sat impatiently in the waiting room of the Children's Hospital in Knoxville, TN as a pediatric neurologist removed what we were soon to learn wasn't a tumor after all, but a cavernous angioma.  When the surgeon emerged through the double doors and relayed the news, my dad danced, leaped and danced before the Lord -not unlike David who took to the streets in praise of the goodness of his God. 

Why am I beginning with Josh?  Because some of you  may be like me.  After an event like this, you wipe the sweat from your brow, thank God for his mercy and deliverance --and you rest.  You think that you have just endured what will be expected from you this side of heaven. Surely God knows how much you struggled, how much you cried, how much you prayed, and realizes that this was all that you could handle.  Surely.
Josh and Ethan in 2005

Sometimes, most of the time, God's plans are different.  He journeys with us through one storm so that the next one we face, we can do so with much more assurance and trust in Him.  When Ethan was born with ten fingers and nine toes, we were concerned, but reassured by the hospital pediatrician that someone in the family tree probably had a few extra toes or a missing digit --it was nothing to lose sleep over.

The lost sleep came in a few short months when I realized that his left leg, along with a missing toe, seemed shorter than the right.  Sure enough, the pediatrician agreed, and the hunt for a diagnosis began.

Ethan -age 6
Long story short, an orthopedist in Knoxville, TN diagnosed Ethan with a "mild" case of Fibular Hemimelia when he was nine-months-old and suggested that treatment wouldn't need to begin until age 12 or 13.  At home, I searched the Internet, but found little information about FH, and what I did find were scary images of amputated limbs and what I now recognize as external fixators.   We stayed with the doctors in Knoxville until Ethan turned six-years-old, and God sent us elsewhere.