9-11-12

Wow, it's been a long time since I've updated this blog:)  After a request from Nana, I think it's time.  We've hit some pretty major milestones since my last post...including walking and now running.  Our goal for Joseph this summer was to be able to play outside in a functional shoe.  I'm sure most of you have seen him living it up....so the shoes have been a success!

 

I think I have a love/hate relationship with his shoes.  I love them because he can walk, I hate them because it is a never ending cycle of adjustments.  It's such a balancing act of getting enough height without compromising his knee.  We went back to the Children's yesterday for x-rays after feeling a "bump" on Joseph's shin.  He cried during the x-ray saying "all done mama all done".  For a man of few words...he must have really meant it!  Once we saw the dr. we were reassured that what I am feeling is Joseph's tibia bowing, which is normal for him.  He quickly warmed up with all of the dr.'s and nurses telling him how cute he was.  By the time we walked down the main hall of the hospital he thought he was a rock star.  He was waving, laughing and smiling at EVERYONE we passed.  I think he assumes everyone is there to see him. 

On one of the Fibular Hemimelia parent blogs, I had the chance to read about the experiences of some adults who have FH.  It was disheartening to read about the daily pain they live with in their joints.  They struggle to find doctors who will treat their pain, instead they are encouraged to accept their "quality of life" as it is.   It brings tears to my eyes to think about a life for Joseph that is filled with pain.  The path to easing that impending pain is so confusing!  We've done all of the research, talked to other parents, gotten second opinions...but still no luck on a decision to lengthen his leg.  We're just going to give it more time.  I pray that we can raise him to not feel sorry for himself, even if it hurts...life will have to go on.

 

It's easy to feel sorry for my baby (or toddler... I still think he's my baby boy), but it is certainly easier to feel thankful, we just have to count our blessings!  And we can add to that list of blessings...

 

...a kindergartner that has finally adjusted to school...no more tears this week.  All it took was a cute little girl, and now he can't wait to go to school;) 

 

Happy 9th Birthday to Caitlyn!!!!

May 30

     For those of you who don't know....Joseph is walking:)  He is nearly running.  It doesn't seem to matter what we do to this little man, he just keeps truckin' along.  In his short little life he's had so many different casts and braces, but he doesn't care.  The doctors all told us he would learn to walk with his head and not his legs.  They sure were right!!!
    Joseph had his heel cord lengthening surgery 3 weeks ago.  He did great and was back to walking the very same day:)  Here is a picture of his cast: 

     Since surgery, we've been back to the hospital three times fixing his cast.  Today we got a "bivalve cast"....a fancy way for saying he has two pieces of cast held together with an ace bandage (it's 2012-seriously, how is this as good as it gets????).  The good news is he can take it off to take a bath.  Joseph splashed so much in the tub.  He was one happy, chubby, CLEAN baby.
     We also went to visit his prosthetist.  They put another cast on (yes----he's had three different casts on today).  This one was to make a mold to build an ankle brace that will fit inside a gym shoe.  We go back in 2 weeks to get the brace and then begin the process of getting a shoe lift.  Summer is going to be over before we get this figured out.
  There are two things that scare me right now.  One is that this surgery is a walk in the park compared to what lies ahead.  Even this little surgery threw our older kids for a loop, required too many days off of work and wore Joe and I out.  How are we ever going to handle the big surgeries?  It's almost too overwhelming to think about.  But I know we'll get through it.  I look at friends  around me who have carried burdens much heavier than ours, and they do it all with such grace...and a lot of faith in God. 
      My other fear is that we just aren't on the "right track" yet.  I want so desperately for us to find answers for treatment here in Cincinnati with Dr. Mehlman.  But the more we try here at home, I feel like we are "experimenting".  Time will tell:)

In nonleg news... Jack William Clements graduated from preschool.  I sure am proud of him!!!!
Here he is getting his diploma from Fr. Fred.

Quick update

Two weeks ago we had a plan. Joseph was going to spend the next year learning to walk with a prosthetic leg, and we were 100% comfortable with the plan.  Didn't last long...the prosthetic leg they built wouldn't work.  His leg isn't SHORT enough:)   So we went back to Dr. Mehlman at Children's on Monday and now we have a new plan!  Joseph will have surgery on May 8th to have his Achilles tendon lengthened.  It is outpatient and he'll come home with a cast that he'll wear for 3 weeks.  After the cast he'll get fitted for a brace to help with his ankle and will get to wear a gym shoe with a lift.  I can't tell you how excited I am that he gets to wear a PAIR of shoes.   Maybe he will be walking by summer, he's getting brave and taking lots of steps!

Baltimore/DC

     Whew....I think we need a vacation from our vacation!  I can't believe how much we fit in during the past few days.  Last week I was a nervous wreck over this vacation, packing ,planning and worrying about Joseph, and now we are already heading home.  To update  you on his visit, I'll have to fill you in on the past month:
A few weeks ago we went for Joseph's limb clinic appointment at Cincinnati Children's Hospital.  Joe and I knew exactly what to expect going in.  Their view of Joseph's leg is that they can't fix what mother nature didn't give him.  They strongly disagree with Baltimore's approach, they say there is no research to support what they do.  They feel like the surgeries are too painful and take too much time  away from growing up.  Their plan is to fit Joseph with a prosthetic leg and let him grow up as normal as possible.  That has obvious limitations, he will grow out of the prosthetics constantly, they cost a fortune and prosthetics ultimately aren't meant for legs that still have a foot.  All that being said, we were sold with Cincinnati's plan.  The thought of putting our family and Joseph through many surgeries out of town seemed too daunting.  Last week we even took Joseph for his first prosthetic fitting.  I was so exciting, Joseph was finally going to have a tool to help him walk.  He gets frustrated crawling trying to keep up with everyone, he is ready to go!
    Then we went to Baltimore.  Ughhhhh, the way I feel makes me want to scream.  I wish the doctors could agree on a plan.  I can totally buy into both  points of view, I wish I knew which was best for Joseph.  Dr. Standard knows SO much about Joseph's condition, he has such a positive outlook for Joseph's future-a future with two equal length legs.  He countered every concern we had with logical explanations.  He would like to operate this summer on Joseph's ankle to reconstruct it and then put a fixator on to straighten his tibia (which will also lengthen just a few centimeters). We would have to stay in Baltimore 2-3 weeks, then we could come home and send in x-rays from Cincinnati.  Then we'd come back to Baltimore after two months or so  to have a surgery to remove the fixator.
     As confident as we are in Dr. Standard's plan, we just aren't ready for it yet.  We decided we are going to wait a year to see how Joseph does with his prosthetic leg.  Technology finally seems to be moving along in the limb lengthening field.  In my dream world, they will perfect their internal lengthening devices and make it usable for small children.  Then we won't have any pin turns, infections or scary looking devices.
    On another note, if you haven't been to Baltimore's inner harbor, you have to go.  We had so much fun!  Grandma and Papaw took the kids on a water taxi, to a children's museum and we all got to explore old ships, submarines etc.  This picture is of Caitlyn and Jack after touring a submarine:

After Baltimore we went to visit Katy and Jason in Charles Town.  We got to see baby Sawyer's room.  Seeing Lucy the Dog was a highlight of the trip for Caitlyn.

Then it was on to D.C.  It was another great trip!  Caitlyn had just finished studying a chapter on the branches of government-so she was all about this trip (thank you Mrs. Willis!).  We became experts at riding the subway!  We went to Mt. Vernon, saw all the monuments, went on a double decker bus tour and had a private tour of the Capital.  Caitlyn got to sit in the same seat Hillary Clinton sat in during the State of the Union Address.  Here is a picture of the kids stepping on the very center of D.C.- apparently it brings good luck:

    Today we got to go to the White House Easter Egg Roll, it was amazing fun! (Thank you Congressman Chabot!!!!!!!!!!)  For you Disney fans, the kids got to watch a concert performed by Rocky from Shake it Up, we met the Power Rangers, Captain America and lots of other characters.  The kids rolled Easter Eggs down the White House lawn. 
....It is times like this that remind me, no matter what we decide for Joseph, he is going to be fine.  I'm quite in love with this little family God has given me:) 

Back to Baltimore we go:)

   Joseph has an appointment on April 6 with Dr. Standard.  Grandma and Papaw are going with us this time!  We are getting close to the point of having to make some decisions on surgeries, so this is just a check up before we finalize anything.  The tentative plan is to have some joint reconstruction this summer.  My prayer is that the dr. only recommends reconstructing Joseph's ankle with a surgery called the "super ankle".  It is possible that Dr. Standard will also want to reconstruct his knee and hip...which means a body cast for quite a few weeks, doesn't sound like much fun!
     After Baltimore we are going to go to Charlesltown WV and Washington D.C.  Joe is so excited!  I'm glad that our family can find ways to get excited about these trips, because it is stressful and emotional preparing for them.  I'm also thankful for our parents who are willing to go along on the trips so that we can continue on this adventure as a family.  We didn't want Caitlyn and Jack to feel like they were being "left behind" when we took Joseph to appointments.  I think that Joseph really benefits from having them around too, he adores them!