At the beginning of May my mother, baby girl and I flew out to Baltimore to meet with Dr. Standard and get more detailed information on Gracie's condition. I was anxious and excited to finally get an idea of what her future would hold as far as medical procedures go. We were lucky enough to get a last minute day trip into Washington DC, and were so impressed by the people we met everywhere we went. Baltimore is one of the most friendly places I've ever been.
First I want to say we were extremely impressed with Dr. Standard and his team. He was so friendly and patient. I'm a super organized person and I had been preparing for this trip for a couple months, so I had 6 pages of questions for him. He didn't laugh when he saw them, and he took his time answering each one. He really made me feel like I had his time and attention and Gracie was important to him. He even let us record the conversation so Robert could hear everything coming straight from the doctor. It was the next best thing to being there.
Dr. Standard confirmed Gracie's diagnosis of fibular hemimelia, and informed us that her tibia is also bowed. Her X-rays showed she had no heel bone, but when he physically examined her he could feel it, so he just thinks it hasn't ossified yet. He said there is a chance that it will still ossify, it may just be taking longer. We are hoping that happens by the next X-ray! The appointment lasted a while, but the short version is this: Gracie will have her first surgery next summer. It will be an ankle reconstruction. If her X-rays show worsening of her ankle before then, she'll have the surgery around 12 months old instead of 18. This surgery will require us to be in Baltimore for a while, with a minimum of 2 weeks, possibly longer. Around age 7-9 she will have her first and possibly only lengthening surgery. During this surgery her tibia will be straightened and hopefully give us some extra length. Dr. Standard felt that we may be able to get by with just one lengthening and then looking into other options like stunting the growth in her left leg, etc. It really just depends on what the outcome of the first lengthening yields. Some of this is very wait and see, wait and pray, beyond the first 2 surgeries. I'm ok with that though because I have an outline of what's to come. She also needs a brace and X-rays redone in a few months, but for now, those are the plans.
Today we go and get Gracie fitted for an AFO (ankle foot orthotic) brace. I'm struggling with her being in a brace which seems so small when I look at the big picture, but it's just a real visible reminder and I think that's what makes it hard.
A mother recently posted on a support group/informational site that I'm part of about how parents who choose lengthening over amputation are torturing their kids and setting them up to be addicted to pain medication. I'm sure deciding to amputate is just as hard of a decision as lengthening on a moms heart. None of us want our babies to suffer in ANY way. That being said, her comment broke me. I've held it in because I didn't want to give her the satisfaction...but as a new to this mom, it tortures me to think of the path we're choosing for Gracie, and to hear we'd be needlessly torturing my baby was hard. But...We don't for one second think this is the wrong choice for our family. Is it going to be hard, oh yes. A lot of work, oh yes. A struggle financially, oh yes. But Gracie is NOT going to be tortured or addicted. She is going to be healed by the advancement of medical technology and held by her family with help from doctors to keep her as pain free and healthy as possible. She is going to be held and blessed by God and the comfort only He can provide. Anyone who thinks these decisions are easily made or made without all the love in our hearts is wrong and she was very wrong.
Im learning that these surgeries are painful and recovery is hard work....but kids aren't born lazy. We teach them that and Gracie won't be taught that. She is going to be strong and we're going to get thru this. At the end of it all she'll be a little girl with 2 even legs and battle scars! I'm already proud of her.
Anyway, I wanted to post a thank you to this group because they have lifted me up, educated me, and listened to me when I've needed it most! (search fibular hemimelia and limb lengthening in Facebook).
I found this scripture for today's posting about staying the course. I find peace in it that if God laid out this path, He will provide for it all the strength, love, support, healing, and finances we need to travel on it. As a family we stand today in these verses:
"You're blessed when you stay on course, walking steadily on the road revealed by God. You're blessed when you follow his directions, doing your best to find him. That's right—you don't go off on your own; you walk straight along the road he set. You, God, prescribed the right way to live; now you expect us to live it. Oh, that my steps might be steady, keeping to the course you set." (Psalm 119:1-6).
Thank you all for your prayers! Please keep praying for healing, provision for these trips/time off work/medical costs, and for our sweet baby to stay the happy baby she is now! Here are some pics from our trip and a pic of my two babies.
