A different outcome...

Well, some disappointing news today.  Surgery on Amelia's right leg did not go as planned.  When her surgeon removed the cast from her left leg that she had surgery on 5 weeks ago, he noticed that something wasn't right.  An xray showed the plates in her femur moved and the screws were coming out.  We're not sure of the cause for this, but her bones were not healing as expected at this point, but Amelia has had trouble healing at times for minor things because of her Loeys Dietz Syndrome.  So, Dr K decided to just focus on repairing the left leg today.  There is now a double plate and 6 screws instead of 4 to hopefully prevent this from happening again.

In 4 weeks we'll reevaluate, do an xray and if the the left leg is doing well, we'll schedule surgery on the right leg.

To make sure this doesn't happen again, Dr. K put Amelia in a spica cast - her left leg is casted and the cast then extends up around her chest to her arm pits to keep that leg from moving at all. 

One of the first things Amelia said after waking up in recovery was that the "wrong" leg was casted, she was so disappointed.  She is still trying to figure out why and is asking a lot of questions and of course, just wants to go home.

As I contemplate this tonight...I am thinking about all of you.  Our only hope is found in our Savior, Jesus Christ, and when you pray to Him on our behalf, we know He is listening and cares about every single detail.  Thank you for blessing us in this way!  We truly appreciate your prayers!  At this point, these are some of our specific prayer requests...

Please pray that healing goes well this time so we can move ahead with surgery on the right leg.  In the meantime, pray that God would give Amelia's doctor guidance and wisdom in making the best decisions for her.  He was surprised and very disappointed with this setback.

Pray for Amelia, that she will be able to accept her situation and thrive when she's just too young to understand why.

Pray for us as a family as we adjust to yet another casting hurdle; it's been a lot for Elsie and Sam to go though over the last 4 years.  Pray that we would have patience, understanding and kindness with each other when we're feeling discouraged.

Thank God that He is in control and nothing surprises Him.  We can trust He cares deeply about Amelia and will bring everything together in HIS time.

Our pastor saw Amelia before surgery and reminded us that "we are precious in His sight"...do not fear because we are His and He is always with us (Isaiah 43).

Time for round 2....

Tomorrow Amelia will be having surgery on her right leg.  She had blood drawn a couple times since the last surgery and the most recent report showed a lot of improvement in her hemoglobin, so her blood management team gave the go-ahead for surgery #2.  The plan is to approach it similar to the left leg, but her right leg is more complicated and has always been more stubborn, so please pray with us again for a successful surgery!  They will also remove the cast from her left leg (in surgery) and her orthotist  will be in there to fit her for a KFO (Knee Foot Orthosis).  This is a leg brace that is like her AFOs (Ankle Foot Orthosis) that she has always worn, but will extend above the knee.  

Elsie had a birthday party last weekend

and Amelia wanted to try out the

"photo booth" too.

I always feel guilty that I am not good at keeping you up to date on Amelia's progress and I apologize for that.  But, I am happy to report that she has been doing really well the last couple weeks.  The first few weeks were tough, especially at night.  And she fought her pain meds at home just as much as she did in the hospital, so that was always a struggle.  Although, for the most part, her days were pretty good.  She would have periods of being very uncomfortable or painful at times, but it went much better than I expected.  Of course, she learned how to scoot around and get where she wanted to.  Then, the second week in, she came down with a high fever.  Assuming it was influenza, like what her older brother had the week before, we treated it as such.  But, she started vomiting a lot and Sam never did.  So, we called her surgeon in the morning and they had to see her to rule out an infection.  They removed part of the cast and the incision looked good - so thankful!!  They replaced that part of the cast and we went home with 2 different colors now.  :) 

Now we face round 2.  I'm more confident than I was before surgery #1, but yet more nervous knowing how difficult the left leg was and now with the more complicated leg...I'm not ready to go through it again, but at the same time, I'm ready to get it done!  She told me tonight that she will have surgery tomorrow, "but I do NOT want surgery ever again."  Unfortunately, this won't be the last, but we won't worry about that now.  

I can't thank you enough for all the prayers and thoughtfulness during this time!  I love to read all the emails, messages and texts - they're so encouraging and the thoughtfulness alone means so much to me - even when I'm not good at responding to those either.  :(     

I would also like to thank those who have brought us meals since Amelia's surgery.  That is such a huge blessing to our family and helps us out so much!  We have received so much support in other ways too and it means more than you will ever know!  Amelia has also loved all the cards and thoughtful gifts too!  I said it before, but to know that she means that much to others - I can't really even express how that touches my heart.  Our dear friends from church gave us a gift before Amelia's last surgery and part of it was a devotional by Joni Eareckson Tada called "Pearls of Great Price."  It couldn't have come at a more perfect time.  Especially with the recent loss of my dad too.  The devotion on February 12 was called, "A Soft Heart."  It seems to capture how important this encouragement from friends and family is when you're on the receiving end.  

"Focus on suffering is a dead end.  Rationalizations and justifications do nothing but harden our hearts, making things worse.  However, softness of heart comes when we encourage one another in our suffering - spreading truth, imparting hope, bearing the burden, sharing the load, praying alongside, and offering a comfortable shoulder to cry on."  

"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."  Isaiah 41:13

Thank you for continuing to lift Amelia and our family up in prayer!  Of course, we pray that everything will go well tomorrow with the surgery, but this wears on our family as a whole too.  Please pray for understanding, peace and love for each other as we jump another hurdle together.