Tuesday, December 13, 2011

Sillies and Giggles

Sillies and Giggles. That is the perfect description of my little Kilah. As reality of her diagnoses took hold, my heart was heavy. Having no disability myself, this was a whole new world to me. I spent a few days grieving this news. I did a lot of praying and searching God for answers. I reminded myself that this will be all she will ever know and will be the normal for her. I also thought about how I danced starting at age 3 until I was in my 20's. I always hoped my own daughter would have the same love for dance. Now I wondered if she would even be able to try dance? I wrestled with all of these thoughts and more while she, Kilah, reminded me everyday what life was really about. She was so full of sillies and giggles all the time that I had no choice but to laugh and join in the fun. I was falling in love with this little being more and more everyday and continue to still.

After the grief passed I began to have a new reality. The truth. The truth was that my daughter was completely healthy and wonderful and has a minor issue that can be corrected with surgery. There are so many who have lost children for any number of reasons. My new reality is to walk in my blessings and be thankful. The process to get my heart to this place only took a few days. I'm so thankful to the Lord for His faithfulness. He is always faithful to give me the wisdom I need for any situation that I face. We never know what life is going to throw at us but it's so great to have my Father God to cling to in every situation and the Holy Spirit's constant guidance.

I had one moment of pure joy and reassurance after reading this scripture:

"To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:7-10

Wow! Some scholars believe that the "thorn in my flesh" that Paul refers to here is possibly ongoing eye infections.  Paul was dealing with health issues and prayed that God would take them away, God said, "My grace is sufficient for you, for my power is made perfect in weakness." I love this promise from the Lord. I know Kilah is going to be a beautiful, strong, confident woman of God one day because of this promise.

- Thanks for reading.  I'm slowing posting our whole story.  My next post will be about our trip to see Dr. Paley.

Monday, December 12, 2011

1 in 50,000

God gave us Kilah Jane on September 1, 2010. Our lives were changed that day forever. We were parents for the first time. For us that became reality as soon as we saw her beautiful face. Truly a beauty with red hair, blue eyes and fair skin she melted our hearts at first glance. 9 months of nausea, and nearly 4 days of induced back labor was quickly forgotten. We had a little hiccup the next day when Kilah's pediatrician came to see her for the first time. He did all of the normal inspections and when he checked her legs he noticed that her right leg was a very small amount shorter than her left leg. She was a perfectly healthy, beautiful baby girl except for a small Limb Length Discrepancy (LLD). Her Pediatrician told us it probably wasn't anything to worry about. He said that most people have up to a 1/2 inch difference and that she was probably one of those people. However, her pediatrician is very thorough and decided to send us to an Orthopedic Specialist to check it out and be sure.  The specialist was Dr. Burton, a very nice, very old Orthopedic Surgeon in Flint, MI. He really was wonderful and took a lot of time with us. The first time we saw Dr. Burton, Kilah was only 2 or 3 months old. Dr. Burton also thought that Kilah's LLD was minimal and wouldn't be any problem for her.He predicted she would need a small shoe lift to make walking more comfortable once she was an adult.  However, also being a thorough doctor, Dr. Burton asked us to come back to see him again in a few months.  We made an appointment for around age 6 months and went on our merry way.   As those few months passed we started to notice that her LLD was growing larger. We especially noticed it when she happily bounced in her jumperoo.  Her right leg definitely wasn't growing as quickly as her left leg.  There she would jump, unaware of the worries of the world. 

When Kilah was 6 months old we went to Dr. Burton again. After more x-rays, Dr. Burton decided we should see a Pediatric Orthopedic Specialist. On April 7, 2011 Kilah was diagnosed with Fibular Hemimelia (FH).  We went to see Dr. Settecerri and more X-rays were done and it was a very quick diagnoses of  FH. With the right angle on the x-rays anyone who knew what they were looking for could easily see that Kilah only had part of a Fibula in her right leg. Dr. Setterri also took a lot of time with us to make sure we understood everything and that all of our questions were answered. He explained that Kilah was a special case of FH. He said that in many cases of FH the person may not have all of their toes or may have other more severe deformities. Kilah, however, has a perfectly normal foot and all of her toes. Then he said the "A" word. Amputation. I remember my heart sank and I fought tears. My little 6 month old baby was asleep in her grandmother's arms in the chair next to me and he was suggesting that we cut off one of her tiny little legs at the knee. It was horrifying to think about in that moment. He explained that many doctors suggest the "A" word because it's quick and easy fix.  Then he said that there was another option. "What?! Another option?!  Oh!!! Praise the Lord!," was all I could think. Dr. S began to explain that there was a Limb Lengthening procedure that could be done, however, it was very painful and could involve multiple surgeries as a child. We would have to find an even more specialized doctor to treat her. If we chose amputation Dr. S said he would do the surgery for us but if we wanted to look into Limb Lengthening (LL) he wished us the best.  Dr. S said that it would be very hard to amputate a perfect leg like Kilah's.  After hearing him say that I felt convinced we needed to look into LL to see what it was all about.  Dr. S gave us a few names and locations that do LL for us to research, so that was where we started looking.  It quickly became clear that a Dr. Paley was a pioneer  and one of the (if not THE) best in the world in Limb Lengthening surgeries.
Dr. Paley's Institute is located in West Palm Beach Florida.  Since we already had a family vacation booked to go to FL before we had the diagnoses, I crossed my fingers and called Dr. Paley's office to see if they could fit us in during our vacation.  I plead my case and was so thankful to get a call back with an available appointment time.  Praise the Lord!!