In just a few short days, Joseph will have his first lengthening surgery.  We have planned for this since before he was born.  Although I feel organized and prepared, my nerves are frayed.  I woke up this morning, ready to celebrate Joe's 34th birthday, but just couldn't shake my feelings of worry.  But thanks to one of the best, most thoughtful friends a girl could ask for, and the most supportive town around, the only feeling I have left is gratitude.  Our family walked into Diana's kitchen, and was surprised with a Christmas tree and kitchen table overflowing with gift cards and kind notes.  St. Bernard and St. Clement have the most genuinely generous and thoughtful families.  I'm pretty sure I don't have to cook for a year, or maybe two!  I hope all of you know how much this means to us, we LOVE you all!  Keep those prayers coming, I'll update you all next week.

THANK YOU!!!!!!

That cute face sure keeps him out of trouble! We have had a great summer, and it's just about time to go back to school.  It's also almost time for Joseph's first lengthening.  We met with his surgeon, Dr. McCarthy today and are planning on late November, early December.  Our goal is to have him mobile and pain free by next summer so that he can enjoy the pool and playing outside with his brother and sister.  This is a scary surgery for us, we are planning the best we can to be prepared.  I think one of the hardest parts is preparing those around us for what Joseph's leg will look like...so they aren't surprised.  I don't want a look of shock on people's faces to scare Joseph.  And I certainly don't want people to load on the pity with comments like "that's so sad, you poor baby" etc.  He gets that a lot...and it bothers him.  So I am going to post a picture on here that is fairly graphic that will show a device similar to what Joseph will have on his leg.  Not trying to gross anyone out, I promise!  This is a little girl who has FH like Joseph...

So now you've seen it.  Yuck!  We've been talking to Joseph about the fixator, we told him that he would be like iron man.  Now he's convinced that we'll be able to add fire shooting out of it and that he'll be able to fly.  He's always good for a laugh.  So if you see a 3 year old flying through the streets of St. Bernard, don't worry...it's just Iron Joseph:)

I'll update again when we know the exact date.

MRI

     Joseph had an MRI this past Tuesday, and I couldn't have been more proud of my little guy.  He had no fear.  He stood patiently while the nurse took his temperature, pulse and got his I.V. ready.  He followed everyone's directions with a smile on his face.  Joseph enjoyed visits from his Uncle Tom and Aunt Crysta.  He knew he was going to take a nap at the hospital and grinned (with the help of some laughing gas) while his IV was put in.  He was so excited to take a ride on the hospital bed, he said it was just like a ride at Kings Island.  The only tears we had happened when they gave him the medicine to fall asleep, he cried "I want my brudder and sister".  He woke up happy as can be and continued to laugh throughout the day about how wobbly he was on his feet.
     Watching Joseph, only 2, handle this day gave me great hope for everything that is coming his way.  His little, sweet but brave personality will benefit him for sure.
     We went to see Dr. McCarthy yesterday to go over the MRI results.  He was looking at his hips to get a clear picture for the surgery Joseph would have in the Fall.  I have spent so much time preparing myself emotionally for this surgery and have devoted way too many minutes worrying about it.  All for not...Dr. McCarthy said he rarely sees hips that are as well formed as Joseph's are.  I couldn't hardly believe my ears, we get to skip the first surgery!  He will have his femur lenghtened around age 4, and nothing until then!  Is there a better way to start summer vacation than to receive such great news?  I think not:) 

Third Opinion

     Earlier this week Joe, Joseph and I went for a third opinion on Joseph's leg.  Before this appointment we had two approaches: "wait and see" or lengthening in Baltimore.  Neither felt right.  I was leaning towards Baltimore, but with it being so far from home, the logistics of making this work for our family seemed unbearable. 
     We met with Dr. McCarthy from Cincinnati Children's hospital and he was an answer to our prayers.  I knew it was going to be a great appointment from the beginning.  As we walked into the hospital church bells were ringing (I know that sounds cheesy...but they were, and it gave me a great feeling of confidence).  We sat in the waiting room for 5 minutes-unheard of!!!!  Dr. McCarthy has a lot of experience with leg lengthening and was very honest with us.  Joseph is right on the borderline between being a good candidate for lengthening vs. being a good candidate for amputation.  My heart dropped, The thought of amputation doesn't sit well with me, Joseph has too good of a foot to give up!  But Dr. McCarthy ultimately recommended  following nearly the exact same plan as Dr. Standard in Baltimore.  He was our tie breaker and it makes sense.  He said that the "wait and see" approach is only prolonging the inevitable decision of lengthening or amputating...and we are losing these great childhood years where Joseph will heal quickly.
     Joseph will have an MRI in June and then we are looking at scheduling a hip and ankle reconstruction for the fall.  This will be followed by three lengthenings that will end around age 18, a minimum of 7 surgeries.   I am so thankful that we have made a decision, I am so thankful that we found someone we trust close to home.  But now....I am scared.  This is real.  I follow lots of other families who are going through this, and I know it is hard.  It is painful.  Our doctor told us there will, without a doubt, be complications.  It may not work.  I know it's "just a leg"...but it happens to be the leg that carries my happy, chubby baby around.  It is the leg that runs to me when he wants "huggles".  Its the little leg that helps him climb onto things he shouldn't be climbing.  It's the leg that kicks me in the middle of the night, that karate kicks his siblings.  We love his leg.  I so desperately want this to work.  So we'll pray and have faith that we CAN do this and remain thankful that it is "just a leg".

Baltimore Part 3

     Two weeks ago Joseph had a "limb clinic" appointment at Cincinnati Children's hospital.  It wasn't the greatest trip.  Joseph sobbed through his x-rays and I sobbed through his appointment.  These appointments typically follow the same pattern.  X-rays, wait a long time, sit in a room full of doctor's and listen to their opinions.  These doctors are wonderful, very smart and kind, but I can't manage to hold it together while they talk about my sweet boy.  I want them to fix him.  I questioned them this time saying "you guys replace hearts here, why can't you fix Joseph's leg".  Their reply was that hearts are easy while legs unfortunately are not. They strongly recommend not doing any surgery until Joseph is at least 7.  They say that he will be older and will be able to understand more then.  They strongly recommend against the surgeries that are performed in Baltimore, primarily because they will be psychologically damaging, there is no research to support the outcome and could do more harm than good to his joints.  In fact, I think if the dr. down here had his way, we would never do surgery.  I get the feeling that he thinks that prosthetic lifts/shoes are the best options for Joseph.  I agree with what they say, mostly.  But I know that prosthetics aren't meant to have a foot.  I watch the way that Joseph walks, and I cringe thinking of all of the damage he is doing to his joints and all of the arthritis that is in his future.

    We also just got back from a trip to Baltimore to see Dr. Standard at the International Center for Limb Lengethening.  A completely different trip.  Joseph loved his x-rays, waited patiently for a long time, and there were NO tears from either of us. Here is Joseph getting his x-rays:

 Dr. Standard knows all about Joseph's leg...it's typically the only type of leg he sees.  He commented that when he does get a child who has a fibula, it only gets in the way.  Dr. Standard laid out a plan for Joseph that involved first reconstructing his ankle and hip followed by three lengthenings.  Some of the lengthening will involve external fixators (google it if you are interested, I won't post a picture and ruin your next meal).  Other lengthenings will use a mix of internal and external fixators.  In a perfect scenario, it appears to be about 8 surgeries (including putting the apparatus in and out).  Dr. Standard gives me so much hope, makes me want to jump right in and schedule the surgery.  But after hearing the Dr. down here, it makes me pause...and we didn't schedule any surgeries. 

    The problem with this whole mess is each Dr. clearly believes his own philosophy.  We have talked to countless parents.  Parents who lengthen, parents who amputate, parents who do nothing.  Every parent says they wouldn't do anything different, they made the best decision.  Ughhh, gives me hope to know that we will be happy in the end.  But, I also know that these are big decisions, and of course everyone is going to say their route was the best.  When you commit to something like this, you have to be all in.

   Our decision for right now is that we are going for a tie breaker.  We are going to be seeing a different doctor at Children's, one who has been to Baltimore to tour Dr. Standard's facilities.  So we'll see what he has to say.

    I know that Joseph's problem is "just a leg" and it will be his cross to bear for the rest of his life.  But I've been struggling lately, I probably worry about it too much.  After our appointment at children's I was "down in the dumps",  but I have been truly uplifted by the people in our lives.  I think I cried as many tears of gratitude as I did for sorrow these past few weeks.  The calls of support, gift cards for lunch on the road, gift cards to get candy for the kids, gifts of activities to keep the kids busy in the car, the support from our parents in every way possible....have overwhelmed me, have amazed me and remind me how blessed we are.    So thank you, to all of you who have sent gifts, emails, calls and prayers.  Thank you for reminding us that we are not alone in this, thank you for helping us carry our cross.

                                                         

 

New Shoes

     The day after Thanksgiving, Joseph went to his physical therapist for a check-up.  She was worried that the way Joseph was walking was putting too much pressure on his knee.  So we began the process of changing things up.  We went to Children's to get the new plan o.k.'d by his doctor and then it was on to the prosthetist for casting and fittings.  During these appointments, Joseph wasn't too pleased with the process.  He would often cry, but more recently has developed the coping skill of pretending he isn't there.  It is amazing how he adapts. 
     As the brace was being built, he decided that he disliked it.  He would look at it and say "no no" and when we would talk about it at home he would sign "all done".  However, his one request was that it have a "blue choo choo" on it.  Christine worked some magic, and when the day came to get his new contraption...it had a blue train on it.  All was right in Joseph's world!  The brace is much larger.  It goes all the way up his leg and has a metal bar to protect his knee.  It even has a rim behind his "hiney" that he can sit on if he gets tired.  (I'm trying to add a picture, but can't seem to figure it out).
    Still no decisions on the surgery front.  There are other children the same age as Joseph who have completed their first big surgeries and are on the road to recovery.  Am I missing the boat?  Sometimes I feel that way.  I just can't imagine finalizing that decision.  It would mean one of the following options:
1.  Moving to Baltimore for at least 3 months.
2.  Staying in Baltimore 2-3 weeks, coming home....and driving the 10 hours to Baltimore every two weeks for check-ups.  Add in the physical therapy and upkeep of the fixator and I can't imagine having time for anything other than caring for Joseph.   Terrifying.
     Thankfully, I'm 60% sure that this "waiting" plan is still the right path for us. 

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!!!!