Thursday, June 30, 2011

Fibular Hemimelia -Pin Site Infection - Maybe--Only Look if You Dare

 This is one of the pins in the middle of his leg --that seems to have a "hole" of sorts, filling with amber drainage.

These are the top pins which are also draining -- somewhat clear, but also greenish looking at times.

Tomorrow --these have to be checked.  For tonight, nurse Granny in Virginia is reading the blog for the sole purpose of offering her opinion!

Monday, June 27, 2011

Fibular Hemimilia: Let's Praise God for Progress!

Sometimes, most of the time I suppose, hard work pays off.  On Thursday, Ethan saw Dr. Standard for his first follow up visit (16 days post surgery).  The X-ray pictures are, for lack of a more poetic term, awesome!
Let me explain what you are about to see.  In picture one, you can see the 8 plate in his knee.  This device is inserted in a growth plate and will turn Ethan's leg facing forward, as opposed to the slightly twisted way in which it wants to grow.  Obviously, the fixator looms large in the picture, but you can make out the tibia break and the fibula break ... if you look hard enough.  Right above his ankle, you will notice a screw!  Yep, it looks exactly like someone simply set a screw on top of the X-ray, but this is a part of his new hardware.  The screw simply keeps the tibia and fibula growing together.  You can see the pins holding his tibia as well, and the wires that you see are passing through his leg, just below the knee, and crisscrossed through his foot; these provided stability.

The second X-ray shows the breaks in the bones much more clearly.  The top break is the tibia break, and you can actually see tiny white, squiggly lines between the bones.  This is new bone growth!  Dr. Standard's physician's assistant measured this and reported ONE centimeter of growth.  If this continues, then in 12 weeks, he will have grown 6 centimeters, which is our goal!

A side note about the X-rays; we were upset on Thursday because Dr. Standard's office was super busy and backed up and he actually did not go over the X-rays with us, only supplied us with copies and said that all was well.  On Friday, we were driving to physical therapy and turning left at an intersection when our car was hit by another car going through the same intersection.  Needless to say, we all panicked a bit.  We were hit  on the passenger side, above the rear tire ... where Emily was sitting.  The impact caused Ethan's trash can, that he rests his leg on, to overturn.  Thank God, his leg sort of rolled with the can never hit the floor.  Immediately after the hit, though, one of his pin sites began to drain.  I knew his leg was still swollen and that this was just fluid gushing out, but still, I was nervous.  Emily and Ethan were inconsolable for several minutes until they realized that all was okay.  When Emily saw the police officers, she cried and said, "Mommy, are we going to jail!"  Anyway, after about a half hour of waiting, we were able to move the van and drove on to the hospital.  Ethan was X-rayed to make sure that no pins had come loose.  Again, thank God, the X-ray was the same as the one the day before.  What happened next is that the PA, Renee, who I really trust, spent a lot of time explaining the x-rays and answering questions I had --which hadn't gotten answered the day before.  Now, the wreck was quite scary, but God used it to our good.  We received answers and reassurance from the doctor ... and news to celebrate.  Knowing that Ethan has grown this centimeter may seem small (okay, you know I like puns), but it has given us a renewed sense of perseverance!

Talking about growth leads me in another direction.  Did you notice the comment about the 8 plate ... it straightens Ethan's leg that wants to grow slightly twisted.  I want, while I am here and why this blog has generated an audience, to make sure that I'm growing ... and in the right direction.  I've read comments from others as far as the Netherlands, and I have cried because God has entrusted me with a medium to help not only those facing limb lengthening, but those who want to grow and "straighten" out for Him!  What a responsibility and a blessing!  On Sunday, one of the congregational songs we sang praised God for His Faithfulness.  What about mine? (What about yours?)  I want to be faithful to Him, not just in words, but in deeds.  Every day I fail, and every day, I am confounded  by the fact that his Grace is sufficient, His Love is unending, and His Forgiveness is free for the asking.  Transparency, even in a blog, is difficult sometimes, for to be honest, you have to admit weakness and sin.  What I celebrate, however, is that I have an 8 plate of sorts, a Holy Spirit, who guides me in the right direction ... if I choose to obey.  And it is our obedience that He wants above our sacrifice and our praise.

Listen to these words in Isaiah 1:  10-11 -
10Hear the word of the LORD, ye rulers of Sodom; give ear unto the law of our God, ye people of Gomorrah. 11To what purpose is the multitude of your sacrifices unto me? saith the LORD: I am full of the burnt offerings of rams, and the fat of fed beasts; and I delight not in the blood of bullocks, or of lambs, or of he goats.

What is our Lord saying here?  He doesn't want empty words or an outward show of our affections toward him.  What does He want then?

1 Samuel 15:22: 22And Samuel said, Hath the LORD as great delight in burnt offerings and sacrifices, as in obeying the voice of the LORD? Behold, to obey is better than sacrifice, and to hearken than the fat of rams. 
 He wants our obedience; didn't He say if we loved Him, we'd keep His commandments? (John 14:15).  Does that mean a works based salvation or a works based system of blessings?  No, absolutely not.  What it means is that we obey, not out of obligation, but out of love.  We live obedient lives, not in an attempt to follow rules, but in an attempt to immolate our Saviour!  We love Him enough to submit our lives to His will. And when we do that, our lives become blessed, and our God is glorified.  Oh, how I pray to achieve that kind of growth!  And I can, and you can, maybe just a few centimeters at a time!

Friday, June 24, 2011

Fibular Hemimelia --A Day in the Life of a Fixator

Well, we are settling into our new home away from home ... and into life caring for Ethan and his Fixator.  I thought a look at the routine might be helpful for someone facing surgery in the near future.

  • Ethan usually sleeps until 8:00 a.m. or has to be woken up to get ready for physical therapy.  First things first:  he can use the walker and get from the bed to the bathroom to the table.  He still cannot, however, bend his knee --which means that he sits in one chair and we help him lift his leg onto another --not too comfy, but it works for him.
  • At breakfast, he gets half of his vitamins for the day.  In order to grow new bone, he needs a multi-vitamin, 1000mg of Calcium, Vitamin D, and Vitamin C.  He can chew the Vitamin C in gummy form, but hates the "Viactin" chews for the calcium and Vitamin D.
  • After breakfast, I check the fixator to make sure that the struts are on the correct numbers from the day before. We have a color coded schedule for each day.  If he moves in the night, a strut can move, so they need to be checked just in case.
  • I usually turn two struts in the morning --only two can be turned at one time.
  • Then we get him dressed.  This has become easier as he can now stand holding onto the walker and lift his foot enough to slide the shorts over his right foot and leg.  Then, his adaptable clothing just needs to be snapped up the other side.  We also give him pain medicine an hour before his therapy session begins.
  • This week, Ethan has had table therapy three days at 10:00 a.m. and pool therapy at 11:00 a.m.  In order to get to the therapy room, we have to wheel him in his wheelchair and bring along the walker.  Wheelchairs are left in the hall and he walks from the chair to the therapy table.  We help him on the table and then wait outside.
A couple of side notes.  We love his physical therapists.  Not only do they know what they are doing --as they work each day with multiple children in fixators, but they are kind and compassionate.  They know us and him by name and always ask how he is, if we have questions, etc.  There are many advantages to staying at Mt. Sinai for therapy  --I have seen only one or two children in the therapy room without a fixator.  Therefore, you meet so many moms and kids who are going through the same process --and often they are ahead of you and can give great advice.  Also, if there is a problem, the therapist will simply call upstairs to talk to the doctor or his assistant --or send you upstairs to the doctor.

Ethan has had a major problem bending his knee.  We have sat through several appointments listening to him scream in pain --and in fear.  The therapist has reassured us and after a really difficult appointment, she called Dr. Standard who changed some of his exercises until he is "ready" to bend his knee mentally and physically.

  • In order to get ready for the pool, we have to spray Ethan off in the shower --obviously, his leg has to get a good cleansing before he gets in because of possible bleeding or drainage from the pins.  This is easier than it sounds.  Because he can't bend his knee, he has to be lifted onto a shower table and sprayed off and then helped down.  The pool actually has an automatic chair that lifts the children in and out of the water.  However, we have to hold up his leg until the PT in the water gets him over the edge.  Again, when he gets out of the water, he has to use the walker to get to the shower, and then has to wash with a lot of antibacterial soap.  His pin sites have to be wiped clean with gauze and dried with a hair dryer (the pins cannot sit wet) before we leave --again in the wheelchair carrying the walker.
Okay, I don't know about you, but I'm tired just reading this!
  • After both therapies, it's home for lunch and another "turning of the struts."  Since the surgery, Ethan has been very tired, and he usually sleeps some after lunch time.
  • In the afternoon, we do some home physical therapy --exercises we were given by the therapists to do at home.  We are SO happy that Dr. Standard changed the exercises because Ethan was screaming before we even attempted to bend his knee.  He can, however, step up on a step or do a bit of a squat --to strengthen his knee.  Trying to bend it while either lying on his belly or his back was terrible to watch!
  • He gets his second set of vitamins at supper time --and the final struts are turned.  On the days that he does not have pool therapy, he gets a bath at home, especially to clean the pin sites.  Again, this is pretty difficult.  I have to get into the shower with him -as he sits on a shower chair.  The key is having a detachable shower head so that you don't get soaked and can really spray down the fixator.  He is afraid to stand in the slippery shower floor, so Freddie usually get him out and carries him to the bed so that he can get dried off, get his pajamas on, and get his pin sites cleaned off.
  • Usually by the time 8:30 rolls around, he is exhausted, usually weepy ... complaining of pain and, I think, just overwhelmed by the day.  He gets pain medicine before bed.
  • On Thursday, we had a two week, post surgery check.  Bring your snacks!  We had a three hour wait and not much one on one time with Dr. Standard --which was unusual with him.  We also had our first strut change.  As you turn the struts, eventually, you run out of numbers which means that the strut has to be changed.  The strut change was actually quite scary.  Two residents came in, both with wrenches, and the whole process was reminiscent of getting your tires rotated!  Anyway, in order to remove a strut, a temporary one has to be inserted --into one of the "extra" holes in the fixator --to keep it stable.  Without the temporary strut, the fixator could collapse!  They take one strut out, put one in, and remove the temporary strut, and you're finished.
A kinda funny side note:  When we got home from the clinic appointment, getting the strut changed, we found two bolts rolling around on Ethan's foot.  After much panic, we couldn't find a missing bolt --so we're hoping this was part of the temporary strut they put on and forgot to remove!

In many ways, these days seem so long, and in another sense, given all the "maintenance," seem to be quite short.  God is supplying us with endurance and teaching us such a lesson about the short term pain often required for long term gain.

Saturday, June 18, 2011

Fibular Hemimelia --Learning to be a good soldier.

Well, we survived another week!  Thank you, Lord.  AND we made the move yesterday from the Patz House to our new home -the home of Freddie's cousin's husband's great aunt.  Can you make the connection?  Can you believe that Freddie's cousin's husband's great aunt lives in Baltimore, only 35 minutes from the hospital?  Can you believe that she and her husband have a basement apartment that has never been used ... and is fully equipped with a living area, couch and television; a kitchen area, table, frig, stove; a bedroom, twin beds and a dresser; a bathroom, oh you know what's in there; a backyard with a swing set; and a garage filled with toys for grandchildren!  Can you believe that when we called her in March, she said, "You have to come and stay with us!"  Okay, I have to ask, isn't that exceedingly abundantly above all that you would have ever prayed or thought for us?!  The Patz House was wonderfully convenient to the hospital and quite safe and nice for us, especially the fact that Ethan got to meet other children spending their summer in a fixator, too.  BUT, most of the children were there with one parent --one room with one child and one parent works great, but one room with two children and two parents is a bit cramped!  So, God had bigger plans for us.  Can you believe when I asked Freddie's cousin's husband's great aunt if we could stay, that she had one provision ... that we go to church with her ... and can you believe that she said, "Now, I'm a Baptist ...!"  Can you believe God even sent us to a Baptist?  He leaves out no detail!

Okay, for those of you who doubt the verse:  Romans 8:28 --"All things work together for good for them that love God, to them who are the called according to his purpose."  Listen up!  Not only has the Lord provided us a house -- but He has given us a yard with a swing set for the little girl who loves to swing ... and a church that we are excited to visit tomorrow ... and a couch so that Mom and Dad can sit together for a moment or two when the little boy and little girl are asleep in the twin beds.  He has shown us children who have not one fixator but four --one on each tibia and one on each femur --because their leg length differences are so severe --so that we can realize how blessed Ethan is with his one fixator and his 2 inch difference.

The house and how God worked it out is great, but you have to think deeper.  Can you believe that God put into my heart at the age of 5, the desire to be a teacher?  Remember those "School Days" books where you listed your teacher for each school year and what you wanted to be when you grew up?  Every year, I listed teacher.  Now, can you believe that three years ago, a technology job opened up that brought Freddie to the school system?  Do you realize that had God not given me a heart to teach and arranged for Freddie to get a vocational school teaching position, then we could not be here together this summer.  Oh, Jesus, how I praise you for that!  Oh, how you know my heart and how I could not do this alone!  You are so much more that I can imagine!  Can you believe that years ago, a man and women built a basement apartment, so their daughter could have her first taste of "independent" living, and when she married sooner than they anticipated, they kept that basement as an apartment, though untenanted.  Can you believe that Freddie's cousin married the great-nephew of that couple?  That's the God we serve.  I don't know about you, but I'm "called" --I've been redeemed --and He's orchestrating the universe for me and for my family --because He loves me that much.  Can you believe that He loves you that much, too?

Can you believe that He does all of this, and last night, I cried that watching Ethan struggle is too much to bear.  Hearing him cry and seeing everything in his life become difficult and fearful is too much, I said.  Waking him up for pain medicine in the middle of the night, teaching him to walk with a walker, making him bend the knee that hasn't healed from surgery, hearing him say, "You just don't know, Mommy, how much it hurts," ... it's too much, Lord.  You overestimated me.  You're asking too much of a six year old.  Where are you?

Can you believe that He loves me despite my wavering faith and strength.  Psalm 103:14 states, "For he knoweth our frame; he remembereth that we are dust."  He knows how weak I am, and instead of abandoning me because of my doubt, He shows up to strengthen my faith.  How does He "show up"?  He brings to remembrance what He has done and what He commands me to do. 

The verse that He keeps giving me, I blogged earlier: 2 Timothy 2:3 --Thou therefore endure hardness as a good soldier of Jesus Christ." 

Watching Ethan struggle is hardness.  And I'm sure that something you are enduring today would qualify as "hardness", too.  He calls us to endure.  To persevere.  To keep striving, "pressing toward the mark for the prize of the high calling of God in Christ Jesus."  I don't know about you, but that's what I intend to do.  I feel sure that I will fail, that I will have doubts and fears along the way, but I also know that He will pick me up and get me headed in the right direction again.

One last note.  One of Ethan's physical therapists is Jewish.  How do I know this?  Well, Ethan asked about his "hat," and the PT told him he wore it because he was Jewish and because he went to various churches telling others about God.  Ethan then said that when he grew up he wanted to be Jewish, too -he liked the idea of traveling to churches telling others about God.  This, obviously, lead to a discussion about what it meant to be Jewish.  I tried to be as simplistic as I could in saying that some Jewish people do not believe that Jesus is the Messiah and that, in fact, they are still awaiting a Messiah to come.  The next day at supper, Ethan said, "I asked my PT if he believed that Jesus was the Messiah, and he said, no ... that Jewish people don't have to believe that."  This troubled Ethan, who then asked, "Mommy, will he go to heaven."  I had to be honest and said, "No, Ethan, not if he doesn't believe."  His final question, "Will he ever believe, Mommy."   What a question.  Isn't that the only question that matters?! 

I asked Ethan later why he believed that Jesus is the Messiah, and he said, "Because the Bible says so and because it is the Truth."  I was so glad to hear that response and not ... because you told me so.  I want Ethan to recognize the Word of God ... as just that ... God's Word ... the Truth ... and for his faith to be based on that Word, the Word, not my words. 

My question to Ethan lead me to ask myself, "Why do I believe that Jesus is the Messiah."  Oh, the old hymn first came to mind:  "Ask me how I know He lives, He lives within my heart!"

Beautiful Front Yard

Backyard Fun!

Living Room:  Yeah, a couch!



OUR CHALLENGE! -Well, Freddie's anyway!

Look what we found in the garage.  "Would you like fries with that?"

Emily's quite content to play ...

Getting some fresh air!

Monday, June 13, 2011

Fibular Hemimelia Post Surgery Day 6 --And We're Turning

Physical Therapy began today.  Ethan was quite excited to start and had the therapists laughing by the end of his session.  Parents have to wait outside :(     Understandable, I guess.  He will get to try out the pool on Wednesday.  For now, land therapy for an hour a day. 

Pizza Party at the Patz house ... thanks to a few Jewish ladies in the community who bring pizza once a month in the summer.  The ice cream truck is coming on Wednesday along with tie-dying T-shirts.  Ethan and Emily are looking forward to that. 

By now, Ethan's pain level is at virtually zero.  He complains when we touch his leg or have to move it, but the medication seems to keep his pain at bay.  Tonight, I tried stretching the intervals between his medication ... from four hours to five which probably wasn't the smartest idea (but one the nurses said we needed to do after leaving the hospital), given that he started therapy today.  He complained a lot and had a few tears before he finally settled down for bed.

Yesterday he managed a few steps from the bed to the wheelchair ... but today he has progressed to walking down the hall!  Way to go Ethan.  AND he has his little cheerleader who follows him down the hall, saying, "Great job, Ethan.  You're doing it!"  What a great sister.  With all the attention that he is getting, all that she has requested is to be carried "like you carry Ethan."  So, she gets carried from the bathroom to the bed, too.  Easily appeased!

We're learning that life with a wheelchair has its challenges as well as life with a child who can't walk!  We've come up with some creative adapting ... hence the following pictures:

Yep, that's a trash can.  It has been invaluable the last few days.  First of all, we took a car trip yesterday to see Kung Fu Panda 2 --and we found a Wal-Mart (oh, Wal-Mart how I've missed you).  Ethan cannot bend his knee without a lot of pain and, in fact, he isn't supposed to sit with his knee bent because of the fixator and his now tightening calf muscles.  So, we pushed the passenger seat in the van up as far as it could go, I became a middle seat rider next to Ethan, and his leg rested on a pillow on top of the trash can.  Secondly, Ethan was cleared to take a shower yesterday!  This was quite a scary moment or two, but again the trash can came in handy.  Ethan sat on the ledge in the shower and propped his leg on a towel on the trash can and ta-da, he enjoyed a hot shower!

Now, our little room doesn't have a table, and I was a bit puzzled about how to do lunch, etc. because Ethan cannot even fit under a table -- if we had one.  What works?  How about a storage container lid on top of a pillow -ta-da, instant table top.  Emily had to have one, too, and it works great!  Storage containers were another good idea.  Instead of packing all of our things into a million suitcases, we brought a container for everyone --which meant a lot less packing things into the house.  We're getting it.

Turning started today, too.  Look at this picture below.  It is one of 6 of the struts on his fixator that have to be turned.  We turn each strut one millimeter each day.  This has to be spaced out so that only 2 struts are turned at once.  We actually have a color coded schedule to tell us what to do.

I'm glad they include the arrow to tell us which direction to turn lol!  Can you imagine turning it the wrong way?  Well, Freddie had to get the wrenches out that we were given, too.  The major bolts have to be checked daily, and one was working its way out.  Ethan screamed a bit when I said, "Get the wrench," but we were both laughing later!  The nurse who taught us how to adjust the fixator made a joke and said, "If the fixator doesn't need adjusting, then you can work on your Toyota ... because the wrenches are metric." 

Okay, one last scary image.  This is the fixator minus the sponges.  It is still very intimidating to clean the pin sites ... even in the shower.  Today, I wanted to call my mom, the nurse, over so that she could look at a few places ....

 Quite gruesome, but we are all getting adjusted.  Tomorrow has been one week since the surgery.  Wow, what a week!  Not one I want to live again, but one certainly filled with God's blessings of protection and deliverance.

Saturday, June 11, 2011

Fibular Hemimelia Post Surgery Day 4 - Got Our Walking Papers

Okay, for anyone with an upcoming surgery for a tibia lengthening, this was our schedule.

Monday -Pre-op appointment with Dr. Standard --make sure your physical forms have been faxed BEFORE you get here.  I had to hunt down Ethan's form at the pediatrician and have it re-faxed.
Tuesday -I left the OR at 9:20 and saw Ethan in the recovery room at 12:45.  We moved to a room at 3:00.  Uneventful day --the epidural kept him pain free and he was quite calm.     
Wednesday -Saw the PA; Ethan had physical therapy -- a few exercises.  Got into the wheelchair to go to the playroom.  Epidural was great!
Thursday -Saw the PA; another round of physical therapy -a few exercises.  Epidural was still in; back to the playroom.  Started pin care.
Friday -Epidural cut in half at 12:00am, decreased more at 6:00am, and removed at 7:00am.  Very difficult transition to pain medication. Saw Dr. Standard today.  Got the "turning" schedule and PT schedule.   Refused PT and refused to get into the wheelchair.  After much medication, including Ativan --to make him relax, he calmed down by 5:00 pm and slept through the night.
Saturday -Different child!  Much better, seems adjusted to the pain meds, willing to try walking --although it was not super successful (very painful and scary), he walked from the bed to the hall with the help of the PT assistant and stood to go to the bathroom, etc.  We were discharged from the hospital at noon and wheeled across the road to the Hackerman Patz House.

Each journey in life begins with a small step, and Ethan took his today.  Although it was quite shaky and painful, I was so proud of his courage and willingness to take that first step.  It will get easier, I know, but I'll remember this moment when despite his fear and trepidation, he put one foot in front of the other.  Do you need some inspiration? Then here's a moment that will inspire you: share in it with me.

Thank you, Lord, for this little boy, who sang in the elevator on our way down to leave, "Blessed be the name of the Lord; blessed be his glorious name."

Friday, June 10, 2011

Fibular Hemimelia Post Surgery Day 3 -Hanging in There Without the Epidural

Well, we've followed the balloon's advice today ... given to us by Alivia's parents --the little girl who had the rough first night, but a good enough last few days to go home today.  We're still here, but we're outta here tomorrow, and we're hanging in there!

Apparently we were a little spoiled by the epidural, and switching to pain meds was more than a little difficult.  Ethan had a good melt down this morning --one quite deserved I supposed given that his leg is broken with metal pins inserted.  After a lot of trial and error with the medication, he's doing much better this afternoon.  He didn't attempt walking today, but might tackle the walker tomorrow.  I'm taking the advice of a dear friend who has been through quite a journey herself:  we are taking one day at a time.  Thanks, Tanya, we love you and are still praying for you.

Lamentations 3:22-23 says, "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."

I don't know about you, but I'm so glad that after twenty-four hours one day ends so that another can begin anew.  I need those "new mercies" and the One who is faithful.  We are learning to deal with today and leave tomorrow for tomorrow.  Pretty great command:  Matthew 6:34 -"Take therefore no thought for the morrow, for the morrow shall take thought of the things of itself.  Sufficient unto the day is the evil thereof."  In other words, tomorrow has enough troubles of its own.  I cannot handle watching Ethan struggle six months with a fixator, and the Lord doesn't expect me, too.  He will, however, equip me for today --and he did, even through the difficulties.

Thursday, June 9, 2011

Fibular Hemimelia Post Surgery Day 2 -Saying Goodbye is Hard to Do!

Last night the nice lady at the Patz House who hands out fresh linens asked Emily how old she was, and Emily said, "I'm four and she's seventy-two" (pointing at me!).  Heck, I thought I was holding up better than that.  In fact, I have surprised myself.  Anyone who knows me knows that I'm more of a Weeping Willow than an Oak, but these last few days I feel a bit more like that tree planted by the water --you know the one deeply rooted that cannot be moved.  When did I grow such deep roots?  When did I gain the strength to sit by Ethan's bedside and enjoy his progress today rather than worry about the challenges to come tomorrow?  I'm not the same girl I was a few years ago.  I don't know about you, but He's been working on me -- you know the rest --to make me what I ought to be!  I haven't arrived yet, but He's pretty patient.

Challenges today:
1.  Saying goodbye.  The Grannies and the Cousins and the Aunt and the Uncle left us today, and it was hard to say goodbye.  Every girl needs her Mommy --and I'm no exception.  And the Grannies and cousins and Aunt and Uncle will miss us, too.  Emily is going to be a little lost without her Granny babysitters and her favorite girl, Maggie.  BUT, they all are making plans to come back to visit.  God is so good in giving us such people to love us and for us to love.  There are single moms here with children in fixators, trying to do it all on their own.  Pray for those moms because I can't imagine that struggle.

Goodbye Uncle Bubby

Goodbye Aunt Lena

2. Saying goodbye to Grannies and Cousins and Aunt and Uncle was hard enough, but saying goodbye to Josh is another kind of hard.  Yes, he's thirteen, but it's hard to be thirteen and your family in Maryland taking care of your little brother and you torn between staying with them and going home to your dad and a summer spent somewhere besides a hospital.  When your thirteen year old boy cries, hugging you goodbye, how your heart breaks!  How I've had to pray all day ... Lord take care of him, work this out for his good, give him strength and courage, protect him ... Lord take care of me, help me to trust you to work this out for his good, give me strength and courage, help me trust you to protect him.  Will you pray for him too --and for me?   We love you, Joshie, and we'll see you soon, I promise!
Goodbye Joshie!

3.  Now to the easy stuff, in comparison to the goodbyes:  Pin Site Care.
Today we got a look at the fixator minus the sponges.  Did I mention that a pack of the sponges that you see in the fixator pictures --that are made just for his kind of fixator, a Taylor Spatial Fixator, cost $92.00!  Anywho, Freddie and I got to use q-tips and saline and learn to clean the pins!  Pretty intimidating, but we'll get used to it.  The sponges just absorb drainage and will be off for good in a few days.  Thank goodness the pins don't get cleaned daily with q-tips, only if there is an infection or a "crusty" looking pin.  His leg will just get a hose down with a detachable shower head and good ole antibacterial soap.  That won't come, however, until next week when he is released to take a full shower.

4.  Wheelchairs and walkers.  Okay, it's hard to sign off on papers for your child's wheelchair and his walker.  There is sadness knowing there is such a need, but relief in knowing that the insurance pays for it at least!  And, in a few months, this equipment will be a thing of the past --not all children are so blessed.

5.  Tomorrow's challenge --the epidural is turned off .... and Ethan will attempt walking.  Again, another blessing, but another challenge.

Okay, this list has inspired me to write one more thing:  sufficiency.  Sufficient:  enough to meet the needs of a situation.  Within each challenge that I thought would be too difficult, I have found sufficiency.  Sufficient strength, sufficient courage, sufficient patience, sufficient peace.  Where has this sufficiency come from:  from Sufficient Grace.  2 Corinthians 12:9:  And He said unto me, My grace is sufficient for thee:  for my strength is made perfect in weakness."  I have the weakness part down pat, and He has the supply of grace readily available.  

Oh, how I want this blog to be honest.  I have to say that I don't know understand how God's sovereignty and our petitions merge to equal His will, and I don't know how prayer works, and why Ethan had a great first night and the little girl down the hall did not.  But I do know that He wants to hear from us, and that He will supply us our daily bread ... our daily dose of courage and strength to bear the good nights and the difficult ones.  And that the good nights should lead us to praise His name and the difficult ones to rely on His mercy.  And we were able to tell the parents of the little girl that we would pray for her because she had a difficult first night and then we were able to say "Praise God" this morning because they had a good second night.  Maybe no one had said that to them before?  Maybe they'll decide to pray as well.

On the night before Ethan's surgery, a woman whose son was returning for a follow up visit told Josh not to tell his mom, but that the first two days would be terrible.  What was Josh's response:  "Well, I prayed for my brother, and God will get him through it."  The woman replied, "God can do great things."  Thank you Lord for allowing Josh to be the missionary this time, and thank you for increasing his faith ... as his words to this woman were realized.  Ethan's first two days were far from terrible and You get all the praise!

Wednesday, June 8, 2011

Fibular Hemimelia Post Surgery -Day One -Rolling Right Along

Lots of excitement today.  Besides a bit of nausea this morning, another great day so far.  Ethan was a bit nervous about getting into the wheelchair, but once he was in, there has been no stopping him.  Guess who stopped by the playroom to sign autographs and take pictures --and hand out baseballs, t-shirts, and backpacks?  The Baltimore Orioles #17 Brian Matusz (their new pitcher)!  Ethan wasn't quite as excited as Freddie!

We also got the first look at the fixator; pictures follow --and are not for the squeamish! Ethan has checked it out, and was curious but not afraid.  He was fitted with a foot plate --to keep his foot from dropping.  The physical therapist stopped by to help him with a few exercises, and now he's resting fine.

Please pray for Ethan's neighbor, a three year old little girl, Olivia, who has a fixator on her femur --and is having a very difficult time.

 Trying out the wheelchair!

 Brian Matsuz
 Signing a T-Shirt

Signing his baseball!

Uncovering the FIXATOR!

The footplate keeps his foot from dropping.  The color-coded bars are struts that we will turn to start lengthening his bone.

Granny Carol


Daddy and Emily

Granny Wanda

Josh and Maggie

The whole gang!

 Who is this pretty girl?

We are just amazed at Ethan's progress!  The epidural probably won't come out until Friday, so hopefully tomorrow will be as easy as today.  Thank you Jesus for being with my baby and giving him strength and courage.  Help us to give You praise for all things --even for the Oriole who stopped by and was a great distraction for Ethan as he braved the wheelchair for the first time.

June 7th -Surgery day for Fibular Hemimelia -leg lengthening

Glory be to God who hears and answers our prayers.  I was anxious to see how He would reveal Himself today, and He was right on time.  Ethan woke up in the recovery room groggy and sleepy, but not afraid and not in pain.  We got a private room, instead of the shared one we were expecting.   He made very few complaints, only a bit aggravated by the I.V. and epidural tubes.  He actually ordered a P.B. and J sandwich and fell asleep watching cartoons!  Does that sound like "exceedingly abundantly above" all that you asked or thought? -because it certainly surpassed my expectations.  Who was the first person he asked for in the recovery room:  Emily --who was too young to come back (made me cry --what love they have for each other).  They had a great "reunion" when he finally moved to a room.

This was the schedule we followed (for those with future surgeries)
7:30 -arrived at the hospital
9:00 -taken to a pre-op room where we met with the doctor and I suited up for the OR
9:15 -taken to the OR --I accompanied Ethan until he fell asleep
Dr. Standard's nurse met me at the door to walk me out to the waiting room and set up a class for Freddie and me and the grandmas --on caring for the fixator.  God sent her right on time; I would have melted down outside that OR, but honestly had no time.  We walked over to start the class at 10:00 --and it lasted for over an hour.  Great information!
10:40 -the OR called to say that all was fine.
11:40 -2nd call to say that all was going good
12:15 -informed that Ethan had gone to recovery
12:40 -Freddie and I went to the recovery room
3:30 -moved to a room
Dinner, visitors, asleep by 7:30

Below are the picture before and after surgery.  The fixator is covered right now.

 Watching t.v. -of course
He loved the crazy hat and the yellow gripper socks!

 Knee smiley face thanks to Dr. Standard
 It's great to have siblings.