1 Month Away!

Well, it's that time again. We are officially 1 month away from Madi's next big surgery! Limb Lengthening #2 is upon us. We're stressed out and like usual Madi can't wait for the next journey to begin. I think we're all excited to see our Paley Institute friends. Our family game night and silent auction is starting to come together and will be held on May 6th. I just can't believe how far our Madi has come and how far she still has to go. One step closer to having Both Feet on the Ground!

Preparing for the next big lengthening.

 Here we are just over 3 months out from Madi's next big lengthening surgery.  To say I am anxious and dreading it would be an understatement.  Lucky for us, Madi is very excited to begin the process and to get closer to having both legs even.  Madi has been doing great since her last lengthening.  She has enjoyed the time away from doctors and physical therapy.  She is now in second grade and loves it and has so many great friends.  Since her last lengthening where she gained 8.6cm of length, she has grown so much and her discrepancy is now around 8cm, as her bones in her right leg do not grow at the same rate as her left.  It doesn't slow her down though.

  We are so blessed that Madi's dad has lots of vacation/sick leave and will be able to spend quite a bit more time with us down in Florida.  This will be great as we juggle schedules between the two kids.  We were given the option of Madi having the internal fixator this time but with much prayer and research we have decided that the external fixator that she had before would be our best option.  There are more potential risks if there are complications or infections and the internal doesn't provide the stability to her hip that we can get with the external.  As many of you know we have already had to endure 3 hip surgeries to get Madi's hip where it should be so that stability and protection of her hip is essential to us.  Having the external fixator does also mean that this will not be an easy road for her.  Externals do come with their own negative factors.  Physical therapy and pin care are very painful and difficult but we know that Madi is a strong fighter and can get through this once again,

  We are trying to plan some fundraisers before we leave,  As you all know, this is a huge expense for our family.  Not only are there the medical cost but the travel costs and lodging are huge.  We were so successful with our fundraisers with our last lengthening and we couldn't be more thankful to everyone who donated,  We hope you will find it in your hearts to help us once again.  I am looking into t-shirts, a fundraiser event and fundraising page to get us going.  As always there is also a pay pal button right on this page too.

  We just want to thank all of you for your continued support and prayers for Madi and our family as we trudge along this difficult road.  We are blessed to have such an amazing support system.  Love to you all!

The Willcox Family

A lot of Progress and a Much Needed Break

Wow, its been so long since I have posted on this site.  To update from the last post, Madi was able to start walking after her xrays and we began a long process of physical therapy to regain her range of motion and strength in her leg.  We were very busy with school, activities and therapy but she made continual progress and eventually was back to her pre-surgery self.  We had a check up with Dr. Paley in March of 2015 and were told that her xrays look great and we didn't have to come back for a year.  We were so happy to have a much needed break from surgeries and travel.  It has been so nice to see Madi have time to be just a little girl away from hospitals and therapy.  She continues to do great and is progressing in everything she does.  She has done dance and now is showing an interest in soccer.  We are scheduled to go back to Florida in February for new xrays and to plan when her next lengthening will be.  She has been asking for her next lengthening for the past 6 months but I'm not quite sure I'm ready.  Her spirit just amazes me!  Well, that's about all.  I will update more after her next xrays.  Merry Christmas to you all.  Thank you for all of your support!  Here are some updated pictures.  

Playing with Arcee (fixator)

Can't believe Mr. Mike kept the crown!

Getting checked out by Dr. Paley

Love the Ocean!

So Much To Be Thankful For

My Arcee toy!

  First, let me apologize for my long absence and for not updating as I promised.  Things have been so crazy. When I last posted we were near the end of the turning phase and hopeful that we would soon be able to get home.  On August 23rd, we had our x-rays and were so happy to see that Madi reached 86 mm of bone growth and we were told to stop turning and return home for our consolidation period.  We were elated and so proud of Madi.  It was and still is so amazing to think that she grew 8.6 cm of new bone in just 3 months.  Wow!

Madi was excited to get home and we kept telling her to hang in there with her therapy and now that we were no longer turning that her therapy would begin to get easier.  We returned home a couple of weeks later and we adjusted back into our lives.  Madi started preschool and her friends were amazing and so welcoming.

First day of preschool

 We still had 3-5 days of physical therapy a week and that on top of school and Julia's soccer made for some crazy weeks.  A few weeks after we got home we realized that there was something wrong with the pins below Madi's knee.  I kept waiting for her PT to get easier but it was progressively getting more and more painful and we could feel that the pins below her knee were getting more and more loose.  When I got a hold of the physician assistant in Florida and sent him a video of me moving her pins, I immediately got a text back to stop all therapy until we heard from him or Dr. Paley.  I knew that probably wasn't good.  I got the call a few minutes later that we needed to get back to Florida within the next week to replace those 3 pins.  They said to not do any therapy until they were replaced because every time she was bending her leg the pins were moving out some from the bone and now it was a breeding ground for infection.  Well, I learned a long time ago to always be prepared for the unexpected to I planned our trip right away.  Madi and I left the next week for surgery.  As soon as we arrived in Florida we were to immediately go to the clinic for x-rays.  They wanted to see if there was any chance that the fixator was ready to come off, which it wasn't.  While were getting our x-rays taken we learned that Dr. Paley had to leave the country unexpectedly but Dr. Prince would be able to do her surgery.  Dr. Prince is amazing and I was surprised and happy when he came out and told me that in addition to replacing the knee pins, he also was able to removed the hip pins!  Yay, 3 less pins to clean!  She was released that same day and the next day we were on our way back home.  By the time we got home she was up and walking with no pain at all.  It was like she was a whole new person and that is how she has been ever since.  So happy and pain free and the physical therapy was 100 times better.

Halloween fun!

 We continued our monthly x-rays and in November we were told that she was ready to have the fixator removed in December.  It was the best Christmas present ever!!  She was so excited, although she was not excited about not being able to walk for a month.

Getting to try the pilots seat on our trip back to Florida!

We left for her removal on December 14th and got to enjoyed a couple of days of Florida warmth before surgery on the 16th.  The night before her surgery I heard Madi singing Christmas songs in the shower and when I opened the curtain to check on her she was shaking her leg with the fixator and she said "Arcee's singing with me Mommy".  So I asked her if she was going to miss Arcee and she said "Arcee will always be in my heart!"  

Singing with Arcee

She is so amazing and she decided that she wanted to keep Arcee so she could turn her into an art project.  The next morning we went in for surgery.  It was the first time she has ever gone into surgery excited and happy to be there.  That was nice for me, although I still had the same anxiety I always do every time I have to take her into that surgery room.  This time was different though and when they came out to tell me that every thing went well, it was like a small weight had been lifted.  We did it.  We got through this journey with the fixator. Something I questioned so many times whether or not I would have the strength to get through.  The next day we went back to clinic for the dressing changes and she was so excited to go into the therapy clinic to see her therapists Mr. Mike and Lisa.  For me that was so huge.  When they go through so much in that clinic you think that they may never get past that.  That "that place" will always be bad.  It's just not so and  to see her go in there so happy and excited to see everyone, that was amazing and brought peace to my heart.

So excited to see Mr. Mike and Lisa

 That brings us to now.  We aren't quite done with this journey but we are getting there.  We have two more weeks until we go in for her x-rays to see how the bone has healed and to see if she will be ready to start walking.
       So there we are and like the title said,  we have so much to be thankful for!  To get 8.6 cm of bone growth in 3 months with no infections and never having to slow down turns is almost unheard of.  All I can do is thank God for watching over her and giving us the strength that we needed to get through this. This has been one of the hardest things I have ever been through and Madi has been through so much more than any child should go through but she still has her same fighter, "Madi" spirit!  Thank you all for your prayers and well wishes over these past 7 months.  We still have many months of physical therapy to get back all of her range of motion but we are so close to getting back to our normal lives and we are so grateful for all our blessings.

Thank you Dr. Paley!

Look, no fixator!

All healed!